I hope everyone is having a good holiday. I had a good time with my family and now I'm off to Australia for two weeks and then Chicago for a week. I will try and answer some more emails while I'm gone and perhaps update. Right now I have made an appointment with Dr. Kellogg of the Pelvic and Sexual Health Institute in Philadelphia. Her first available was the beginning of February, so I'm interested to hear what she has to say.
Since the flight is going to be 21 hours today, I brought a lot of Lidocaine patches. I also plan on getting up and moving so I am not sitting too long.
Have a Happy New Year!
Saturday, December 26, 2009
Thursday, December 10, 2009
Back to Basics
I'm a little too proud of the clever title of today's post. I'm in the middle of finals, but finally have some time to sit down and update. For all those who have emailed me this past week- I promise I will get back to you very shortly. I'm currently in a Border's after my first appointment back to Beyond Basics. Currently searching for a power outlet... why are there never enough? Physical therapy today was very difficult. As much as I take pride in being proactive, there is also something to be said for not having any PT for three weeks. I've been so focused on my tonsils and getting through that surgery, that I forgot about dealing with this problem. That may seem a little crazy, but I'm sure others will agree. It still hurts just as muc, but when I am not going to therapy or specialist appointments, I also don't have to face and constantly re-access my health condition. Obviously that's what we should be trying to do in order to get better, but it is nice to have that burden lifted for even a short while. I almost convince myself I'm living a normal life. But I digress. Today was back to reality, and a pretty harsh reality check at that.
I've noticed these past two weeks that my gluteus muscles in particular have been extremely tight and uncontrollable. By this I mean they are constantly in a locked position and no matter what I do, they are impossible to release. This is what makes sitting so difficult and painful. Today we did a lot of deep connective tissue work, which had me jumping off the table. I am usually pretty good at just breathing and relaxing and handling the pain, but my muscles were fired up. It was very noticeable, and it might have been the tightest I have been in months. Interestingly, my right side was the most painful. Stacey thinks I'm overcompensating again for my left hip. I also have to go back now and get an MRI of my right hip because there might be something be wrong. I'll have to go back, because I thought I did have my right hip looked at, but maybe things have changed. I sure hope not.
Below is a diagram of your glutes just so I can better demonstrate where the pain was radiating from. If you look at the bottom of the red muscles, the pain was strongest on the inside, following that reddish curve upwards. It was a sharp, direct pain, and now that it has been worked on, is pulsing and extremely sensitive.
This is where all the work was done today and it was greatly needed. I felt a little release when I tried sitting again, but the problem is I'm too sore and in pain to notice a difference just yet. I think after tomorrow I should see some improvement. We went over some better ways for me to sit. First of all, if you ever see me cross my legs, yell at me. I always forget since it's such a natural inclination. I should be sitting all the way back in a chair with my stomach released and my legs positioned at 90 degree angles. Even more important, when I am ready to stand, I have to keep my legs straight (and not turn them inwards) and stand up with equal pressure on both sides of my body. These are things I need to try and be more conscious of because I'm sure they will make a difference in the contraction of my muscles. Now that I'm surgery-free, I also need to get back on the elliptical to loosen up my body, as well as resume core work, hip stretches, and dilator exercises. So, it's back to work and back to basics. (Oh circular narratives...)
I've noticed these past two weeks that my gluteus muscles in particular have been extremely tight and uncontrollable. By this I mean they are constantly in a locked position and no matter what I do, they are impossible to release. This is what makes sitting so difficult and painful. Today we did a lot of deep connective tissue work, which had me jumping off the table. I am usually pretty good at just breathing and relaxing and handling the pain, but my muscles were fired up. It was very noticeable, and it might have been the tightest I have been in months. Interestingly, my right side was the most painful. Stacey thinks I'm overcompensating again for my left hip. I also have to go back now and get an MRI of my right hip because there might be something be wrong. I'll have to go back, because I thought I did have my right hip looked at, but maybe things have changed. I sure hope not.
Below is a diagram of your glutes just so I can better demonstrate where the pain was radiating from. If you look at the bottom of the red muscles, the pain was strongest on the inside, following that reddish curve upwards. It was a sharp, direct pain, and now that it has been worked on, is pulsing and extremely sensitive.
This is where all the work was done today and it was greatly needed. I felt a little release when I tried sitting again, but the problem is I'm too sore and in pain to notice a difference just yet. I think after tomorrow I should see some improvement. We went over some better ways for me to sit. First of all, if you ever see me cross my legs, yell at me. I always forget since it's such a natural inclination. I should be sitting all the way back in a chair with my stomach released and my legs positioned at 90 degree angles. Even more important, when I am ready to stand, I have to keep my legs straight (and not turn them inwards) and stand up with equal pressure on both sides of my body. These are things I need to try and be more conscious of because I'm sure they will make a difference in the contraction of my muscles. Now that I'm surgery-free, I also need to get back on the elliptical to loosen up my body, as well as resume core work, hip stretches, and dilator exercises. So, it's back to work and back to basics. (Oh circular narratives...)
Monday, December 7, 2009
Body Image
By age 17, 78% of American girls are unhappy with their bodies.
The average American woman is 5’4” tall and weighs 140 pounds. The average American model is 5’11” tall and weighs 117 pounds.
One out of every four college aged women has an eating disorder.
Love starts with you! Consciously look in the mirror every day and cherish the person staring back at you. Life is too short to obsess over pounds and inches. Get off the scale, but maintain healthy habits. Learn to see your beauty. Love your body!
The average American woman is 5’4” tall and weighs 140 pounds. The average American model is 5’11” tall and weighs 117 pounds.
One out of every four college aged women has an eating disorder.
Love starts with you! Consciously look in the mirror every day and cherish the person staring back at you. Life is too short to obsess over pounds and inches. Get off the scale, but maintain healthy habits. Learn to see your beauty. Love your body!
Tuesday, December 1, 2009
Emails- Discussion Encouraged!
I have been getting a lot of emails lately, addressing a wide-range of topics. There are some that I'm very eager to talk about and to hear what other thoughts people might have.
First of all, I have had a lot of encouraging emails lately from women offering hope. And I wish I could send those right along to those women who write from a very dark and frightened place. It's difficult to keep in mind that there are many women out there who have gotten completely better with certain treatments. We just don't hear from them as much because now that they're cured, they don't have to search for answers like some of us continue to do.
I've had a lot of women bring up Dr. Goldstein from The Center for Vulvovaginal Disorders in DC. I have heard information about him, but never looked into contacting him about my own case. But it seems that may be a step I want to take now, especially because I am currently without a specialist directing my path. Here is his website in case you would like more information: http://www.cvvd.org/
I already called his office today, but no answer, and still have not heard back from the message I left. I will try again tomorrow. I am curious to see the next appointment he has available for new patients and if he takes my insurance. I think at this point I really need to go back to a doctor and take a more concrete plan of action. Because while I do feel my hip has been involved in this, I also think my problems are multi-fold and need to be addressed on many fronts.
So I will keep you informed as I learn more about that- has anyone else seen Dr. Goldstein? Comments?
Finally, I've also received several emails discussing intimate relationships with loved ones and the pressure and pain that accompany physical contact. While many too often sexualize vulvar vestibulitis and other vulvovaginal disorders, that doesn't mean that there are difficulties with physical intimacy and sexual relations. These still need to be discussed, and I can see through the emails that many wish they could speak out more about this issue. How do you build a relationship when you feel there's a part of yourself that you can't give? I know a lot of us feel guilty, inadequate, not good enough. This is not healthy for any relationship.
I know a few women have even brought up the topic of fluid sexuality- in this case, beginning to be more drawn to women. With a relationship or intimate friendship with a woman, the playing field if a little different- there's much less guilt and feelings of being "broken," or "sick." When intercourse is removed, it's a lot easier to feel relief. And this might be a confusing topic for those who haven't learned about queer theory or sexuality courses. And I want to get more into it later, but wanted to broach the subject tonight because I know it hasn't been talked about and want others to know that if they have ever thought about it- they're not alone.
I also would love to hear anyone's thoughts or advice about anything in this post. Comment annonymously if you do not feel comfortable, but let's hear what you all have to say.
(On a side note, I'm doing much better as far as my tonsils are conscerned. I am almost back to normal after a long two weeks. It's nice to taste solid food again. Starting up physical therapy next week, as well as the gym and dilators at night.)
First of all, I have had a lot of encouraging emails lately from women offering hope. And I wish I could send those right along to those women who write from a very dark and frightened place. It's difficult to keep in mind that there are many women out there who have gotten completely better with certain treatments. We just don't hear from them as much because now that they're cured, they don't have to search for answers like some of us continue to do.
I've had a lot of women bring up Dr. Goldstein from The Center for Vulvovaginal Disorders in DC. I have heard information about him, but never looked into contacting him about my own case. But it seems that may be a step I want to take now, especially because I am currently without a specialist directing my path. Here is his website in case you would like more information: http://www.cvvd.org/
I already called his office today, but no answer, and still have not heard back from the message I left. I will try again tomorrow. I am curious to see the next appointment he has available for new patients and if he takes my insurance. I think at this point I really need to go back to a doctor and take a more concrete plan of action. Because while I do feel my hip has been involved in this, I also think my problems are multi-fold and need to be addressed on many fronts.
So I will keep you informed as I learn more about that- has anyone else seen Dr. Goldstein? Comments?
Finally, I've also received several emails discussing intimate relationships with loved ones and the pressure and pain that accompany physical contact. While many too often sexualize vulvar vestibulitis and other vulvovaginal disorders, that doesn't mean that there are difficulties with physical intimacy and sexual relations. These still need to be discussed, and I can see through the emails that many wish they could speak out more about this issue. How do you build a relationship when you feel there's a part of yourself that you can't give? I know a lot of us feel guilty, inadequate, not good enough. This is not healthy for any relationship.
I know a few women have even brought up the topic of fluid sexuality- in this case, beginning to be more drawn to women. With a relationship or intimate friendship with a woman, the playing field if a little different- there's much less guilt and feelings of being "broken," or "sick." When intercourse is removed, it's a lot easier to feel relief. And this might be a confusing topic for those who haven't learned about queer theory or sexuality courses. And I want to get more into it later, but wanted to broach the subject tonight because I know it hasn't been talked about and want others to know that if they have ever thought about it- they're not alone.
I also would love to hear anyone's thoughts or advice about anything in this post. Comment annonymously if you do not feel comfortable, but let's hear what you all have to say.
(On a side note, I'm doing much better as far as my tonsils are conscerned. I am almost back to normal after a long two weeks. It's nice to taste solid food again. Starting up physical therapy next week, as well as the gym and dilators at night.)
Saturday, November 21, 2009
Not Very Talkative
This will have to be a quick update from my couch. This past Thursday I got my tonsils out, so I've been spending most of my time sleeping or lying down.
I was on antibiotics so much pre-surgery, that I did in fact get a yeast infection on Tuesday. I tried to eat as much yogurt and pro-biodics as possible, but it looks like I still can't catch a break. The good news is I diagnosed myself, and just went into the health center on campus to get it confirmed. Luckily I could still get the surgery on Thursday.
So everything is on a hold right now. Obviously no dilator exercises with a yeast infection. No working out after surgery. I'm just catching up on some couch time for two weeks. I've gotten a few emails in the past couple of days, I wanted to let everyone know that I am getting back to you. Just give me a few days to get back into action.
I was on antibiotics so much pre-surgery, that I did in fact get a yeast infection on Tuesday. I tried to eat as much yogurt and pro-biodics as possible, but it looks like I still can't catch a break. The good news is I diagnosed myself, and just went into the health center on campus to get it confirmed. Luckily I could still get the surgery on Thursday.
So everything is on a hold right now. Obviously no dilator exercises with a yeast infection. No working out after surgery. I'm just catching up on some couch time for two weeks. I've gotten a few emails in the past couple of days, I wanted to let everyone know that I am getting back to you. Just give me a few days to get back into action.
Sunday, November 15, 2009
What a week
This week has been... indescribable. A lot of things have been happening. But let's get back to health. I went to physical therapy at the beginning of this week and won't be going for another three weeks. This Thursday I will be getting my tonsils out, so I need to spend some time focusing on that operation.
I am pretty proud of my dilator routine. I usually make excuses, but this whole week I've been doing the exercises at least twice a day. At this point I have made it up to medium plus, which is the largest I have. It still hurts quite a bit upon insertion, but then the stretching exercises don't bother me. It also gets a lot easier each time I insert in one round of exercises. I'm not quite sure why this is, but maybe I am training the nerves to become desensitized.
This hasn't been a great week for sitting. I'm hoping this doesn't correlate to me being able to work out again. All I've been doing is 20 minutes on the elliptical and arm exercises.
I feel like things have been very structured in my last posts, more like lists. So I leave you with a poem I just wrote. I'm learning to appreciate things in life more and doing things that make me happy. Hooray!
I am pretty proud of my dilator routine. I usually make excuses, but this whole week I've been doing the exercises at least twice a day. At this point I have made it up to medium plus, which is the largest I have. It still hurts quite a bit upon insertion, but then the stretching exercises don't bother me. It also gets a lot easier each time I insert in one round of exercises. I'm not quite sure why this is, but maybe I am training the nerves to become desensitized.
This hasn't been a great week for sitting. I'm hoping this doesn't correlate to me being able to work out again. All I've been doing is 20 minutes on the elliptical and arm exercises.
I feel like things have been very structured in my last posts, more like lists. So I leave you with a poem I just wrote. I'm learning to appreciate things in life more and doing things that make me happy. Hooray!
arise from your slumber,
you cannot walk your path if you do not wake.
face the darkened silence and shadows,you cannot walk your path if you do not wake.
the moon will show you the way.
free yourself from structures and boundaries,
you cannot climb with this extra weight.
forget what has been and defy what will be.
this single step is all that matters.
fight through doubt and definitions.
let each moment shape your Being.
find yourself and make peace.
the dawn has given you wings.
fly past the sunrise, over your mountain.
free yourself from structures and boundaries,
you cannot climb with this extra weight.
forget what has been and defy what will be.
this single step is all that matters.
fight through doubt and definitions.
let each moment shape your Being.
find yourself and make peace.
the dawn has given you wings.
fly past the sunrise, over your mountain.
your soul has been set on fire.
arise from your slumber,
Wake, so that your adventure can begin.
arise from your slumber,
Wake, so that your adventure can begin.
Wednesday, November 11, 2009
A Couple Quick Things...
Just a few quick things...
Went to physical therapy this week and it was great- things seemed to be a lot better. I wish I could feel the results, but I'm staying patient. Still working with the dilators as much as I can every day. I'm also working on developing my emotional relationships much more than my physical ones. It has made me feel more fulfilled and doesn't put as much pressure on me.
Also just started to go back to the gym now that I'm off steroids. It felt great, but unfortunately I'll have to stop in a week and a half when I go into surgery.
I've made it to #7 of the Wellsphere Blogger competition. Thank you all for your support. Please keep voting if you haven't already- it's so important that we raise awareness together.
Finally I also am very proud of a recent photo exhibit I did for campus for Domestic Violence Awareness Month. You can see the article here: http://www.tcnjmagazine.com/?p=2026&archive=October%202009 as well as view all the photos at the bottom.
Went to physical therapy this week and it was great- things seemed to be a lot better. I wish I could feel the results, but I'm staying patient. Still working with the dilators as much as I can every day. I'm also working on developing my emotional relationships much more than my physical ones. It has made me feel more fulfilled and doesn't put as much pressure on me.
Also just started to go back to the gym now that I'm off steroids. It felt great, but unfortunately I'll have to stop in a week and a half when I go into surgery.
I've made it to #7 of the Wellsphere Blogger competition. Thank you all for your support. Please keep voting if you haven't already- it's so important that we raise awareness together.
Finally I also am very proud of a recent photo exhibit I did for campus for Domestic Violence Awareness Month. You can see the article here: http://www.tcnjmagazine.com/?p=2026&archive=October%202009 as well as view all the photos at the bottom.
Friday, November 6, 2009
Sunrise
"O daylight break, so particles may resound,
so the atmosphere and the heavens will turn,
and so souls, headless and legless, will dance.
Let me whisper into your ear where this all goes on."
so the atmosphere and the heavens will turn,
and so souls, headless and legless, will dance.
Let me whisper into your ear where this all goes on."
This how lucky I am. I had a wonderful friend who knew I was upset and picked me up early this morning. We drove in the darkness to the Delaware River and watched the sun rise. And you know what? It will continue to rise every morning.
Thursday, November 5, 2009
Happy Anniversary
I had physical therapy again today. Apparently things seem to be getting better. But I wish I could feel the results more. Just a little something to keep me going.
It's been exactly a year since I started going to PT in New York. I understand I've been through a lot and come a long way, but I was hoping for better results after a year.
This might have a lot to do with the fact that I'm getting off steroids from my tonsillitis, but just tired and feel very alone tonight. I wish I had answers.
It's been exactly a year since I started going to PT in New York. I understand I've been through a lot and come a long way, but I was hoping for better results after a year.
This might have a lot to do with the fact that I'm getting off steroids from my tonsillitis, but just tired and feel very alone tonight. I wish I had answers.
Sunday, November 1, 2009
Really?
Things have been difficult recently. Like I said, a few weeks ago I got a bad case of tonsillitis. Well it seems that infection never cleared up because I got it again this past week, along with a very bad sinus infection. This is a big problem since my tonsillectomy is supposed to be November 19th. Because I've been confined to my bed most of the time, I've had to cancel going to New York and doing physical therapy. I have tried to do my dilator exercises at home and have gone up to the medium. While I'm doing my exercises, I also have to stretch out my hips.
I am also supposed to be doing the elliptical for 15 minutes a couple of times a week- I've only been able to go once because I've been sick so much. I can really feel how weak my hip is and need to start exercising, not only for my sanity, but so my health can really start improving.
Just another reminder that the Wellsphere competition is still going on. At one point I was #8, but I've dropped down to #12. Please take the time to vote by clicking on the right hand of this website. Help me bring awareness.
I am also supposed to be doing the elliptical for 15 minutes a couple of times a week- I've only been able to go once because I've been sick so much. I can really feel how weak my hip is and need to start exercising, not only for my sanity, but so my health can really start improving.
Just another reminder that the Wellsphere competition is still going on. At one point I was #8, but I've dropped down to #12. Please take the time to vote by clicking on the right hand of this website. Help me bring awareness.
Wednesday, October 21, 2009
Whelmed
I had one of those days where I was just overwhelmed with information and thoughts and could not wait to get back and home and get them on paper. Well in this case, virtual paper...
I think big steps have been taken when women started blogging about vulvar vestibulitis because it is such a taboo subject. There are countless women afraid to speak out or even discuss it with their friends and family. It is much more difficult to have a support system and vent about your frustrations. Although this is a big step towards awareness and social acceptability, there's still many topics that are not discussed.
One of these is sex and sexuality- something I have really glossed over until now. If society thinks talking about your vagina is taboo, talking about sex is certainly worse. But at this point, I cannot be silent about it anymore.
I think one of my biggest issues is that having vulvar vestibulitis is so commonly linked as a sexual disorder, when that isn't the case at all. It's sexualized because it deals with the vagina. However, that doesn't mean it has no affect on my sexual life. After a discussion in class about sexuality today, I started thinking more about things I have tried to just push aside and forget. That's not healthy- these are issues I have to deal with.
I have not had sex (in the terms of sexual intercourse) for almost two and a half years now with my ex-boyfriend. I have only been with that one person, and the last time we had sex was when I realized there was something wrong with my body and my journey began. Since that point, a lot has changed. I have not been able to keep a stable relationship since, and the main issue is because of having VVS. There are a good number guys who listen to me explain my story and then run away. There are guys who simply don't want to deal with it. And then there are guys who do seem to understand, but it still doesn't work because I feel an enormous amount of pressure to not only get better, but almost make up for the lack of intercourse with other things. Sometimes this pressure is self-imposed, but my general experience has been that there are very few men out there who can handle this situation, which is very frustrating for me.
I have loved being single these past years, but only to a point. Everything goes well until they either find out or I tell them about my health issues. Once that information is out, it becomes the elephant in the room. But I'm deviating slightly from my main agenda.
I think one of the hardest things I face other than the physical pain and constant doctor appointments is the fact that I no longer feel like a sexual being. I understand that sex isn't just about intercourse, but it is just very difficult to take it out altogether. And I'm not trying to paint the male population as immature, sex-driven assholes- it's more of a critique of society and its standards.
We had another discussion in class about what identity you feel encompasses you the most- whether it be race, class, sexuality, or gender. A lot of people talked about being a woman or being a student... I sat there silent because at this point I identify most with having vvs and constantly being sick. My health is currently defining me, and that's something I can't really escape. I can try to push it to the back of my mind and focus on other things, but it doesn't change the fact that when I wake up in the morning and when I go to bed at night and when I am just thinking to myself, it constantly overwhelms my mind. Like I said in my previous post, I have such a huge support system that I am eternally thankful for. Right now I just wish I could reclaim my sexuality and have that back in my life. I don't need a relationship or someone to take care of me. I guess I just want to be wanted and have it be completely okay that there's only so much I can do when it comes to physical activity. And also have it be okay that just because I can't have intercourse doesn't mean I'm going to do everything else to make up for it. I hate that pressure.
Hopefully some of you can relate to this and hopefully offer some more thoughts or advice or stories. From all of your emails, I know it's a huge issue we face daily and too be quite honest, I'm tired of not talking about it.
I think big steps have been taken when women started blogging about vulvar vestibulitis because it is such a taboo subject. There are countless women afraid to speak out or even discuss it with their friends and family. It is much more difficult to have a support system and vent about your frustrations. Although this is a big step towards awareness and social acceptability, there's still many topics that are not discussed.
One of these is sex and sexuality- something I have really glossed over until now. If society thinks talking about your vagina is taboo, talking about sex is certainly worse. But at this point, I cannot be silent about it anymore.
I think one of my biggest issues is that having vulvar vestibulitis is so commonly linked as a sexual disorder, when that isn't the case at all. It's sexualized because it deals with the vagina. However, that doesn't mean it has no affect on my sexual life. After a discussion in class about sexuality today, I started thinking more about things I have tried to just push aside and forget. That's not healthy- these are issues I have to deal with.
I have not had sex (in the terms of sexual intercourse) for almost two and a half years now with my ex-boyfriend. I have only been with that one person, and the last time we had sex was when I realized there was something wrong with my body and my journey began. Since that point, a lot has changed. I have not been able to keep a stable relationship since, and the main issue is because of having VVS. There are a good number guys who listen to me explain my story and then run away. There are guys who simply don't want to deal with it. And then there are guys who do seem to understand, but it still doesn't work because I feel an enormous amount of pressure to not only get better, but almost make up for the lack of intercourse with other things. Sometimes this pressure is self-imposed, but my general experience has been that there are very few men out there who can handle this situation, which is very frustrating for me.
I have loved being single these past years, but only to a point. Everything goes well until they either find out or I tell them about my health issues. Once that information is out, it becomes the elephant in the room. But I'm deviating slightly from my main agenda.
I think one of the hardest things I face other than the physical pain and constant doctor appointments is the fact that I no longer feel like a sexual being. I understand that sex isn't just about intercourse, but it is just very difficult to take it out altogether. And I'm not trying to paint the male population as immature, sex-driven assholes- it's more of a critique of society and its standards.
We had another discussion in class about what identity you feel encompasses you the most- whether it be race, class, sexuality, or gender. A lot of people talked about being a woman or being a student... I sat there silent because at this point I identify most with having vvs and constantly being sick. My health is currently defining me, and that's something I can't really escape. I can try to push it to the back of my mind and focus on other things, but it doesn't change the fact that when I wake up in the morning and when I go to bed at night and when I am just thinking to myself, it constantly overwhelms my mind. Like I said in my previous post, I have such a huge support system that I am eternally thankful for. Right now I just wish I could reclaim my sexuality and have that back in my life. I don't need a relationship or someone to take care of me. I guess I just want to be wanted and have it be completely okay that there's only so much I can do when it comes to physical activity. And also have it be okay that just because I can't have intercourse doesn't mean I'm going to do everything else to make up for it. I hate that pressure.
Hopefully some of you can relate to this and hopefully offer some more thoughts or advice or stories. From all of your emails, I know it's a huge issue we face daily and too be quite honest, I'm tired of not talking about it.
Sunday, October 18, 2009
Competition and awareness
Before I talk about some exciting news- I want to do some quick updates. Things seem to be going smoothly. I'm still going to physical therapy once a week in New York and it gets easier every time I go. I really do think within this next year I am finally going to be rid of this. I have started using dilators every night and while using them I do hip stretches and exercises. Hopefully this will help increase blood flow and make my skin healthier.
As you can see there are some new changes to this website. First of all, I made a motivational playlist for your listening pleasure while you are reading. These songs have gotten me through many tough times and I hope they help you in some way.
Also, to the right you can see that I just entered into Wellsphere's HealthBlogger competition. I've decided to enter in hopes of providing more awareness about vulvar vestibulitis and vulvodynia. I've read too many personal emails from women who are too scared or embarrassed to talk about their problems and don't know where else to turn. I've been to too many doctors who either do not even know what my condition is or give incorrect medical advice. Change must happen. So I'm hoping to do well in this competition in order to educate even more people about what we have to go through every day. Please click the vote button on the right side, and submit your votes on Wellsphere. We can do this!
Finally (sorry to overwhelm you), I sent out the following message to a few of my friends. This letter also has a lot to do with all of my readers, who have been there for me numerous times. I'm reposting it to thank you all, and to also encourage you to send a similar message to your own support systems. Too often people don't realize the difference they make in your life until it's too late.
Dear friends old and new,
I'm currently writing this in my notebook as I ride the train into New York. I watched something this morning that has overwhelmed me with gratitude and inspired me to reach out to each of you. I am facing my share of struggles, but they have not and will not break me. This is only because I have the strongest support system one could hope for. Each of you has made an impact on my life. Each of you has lessened my pain in some way, whether big or small.
A mass message may seem silly, but I felt compelled to offer my thanks. We might not be that close and we might not still be in touch, but I have memories with each of you that make up the person I am today. Many of you do not realize the difference you have made in my life. Things as small as listening to my fears and complaints, driving me to doctor appointments, making me smile and making me laugh, encouraging me, dancing with me, holding me, helping me catch up with my work, and many many others. The little things matter. And they have been my best medicine over the past two years.
As I sit here today, I am more at peace than I have ever been. And it's because I know what ever mountain lies in my path ahead, I don't have to climb it alone. I wish I could give back to each of you the strength you have given me. I am so grateful. Thank you.
Have a great day and don't forget to vote!
As you can see there are some new changes to this website. First of all, I made a motivational playlist for your listening pleasure while you are reading. These songs have gotten me through many tough times and I hope they help you in some way.
Also, to the right you can see that I just entered into Wellsphere's HealthBlogger competition. I've decided to enter in hopes of providing more awareness about vulvar vestibulitis and vulvodynia. I've read too many personal emails from women who are too scared or embarrassed to talk about their problems and don't know where else to turn. I've been to too many doctors who either do not even know what my condition is or give incorrect medical advice. Change must happen. So I'm hoping to do well in this competition in order to educate even more people about what we have to go through every day. Please click the vote button on the right side, and submit your votes on Wellsphere. We can do this!
Finally (sorry to overwhelm you), I sent out the following message to a few of my friends. This letter also has a lot to do with all of my readers, who have been there for me numerous times. I'm reposting it to thank you all, and to also encourage you to send a similar message to your own support systems. Too often people don't realize the difference they make in your life until it's too late.
Dear friends old and new,
I'm currently writing this in my notebook as I ride the train into New York. I watched something this morning that has overwhelmed me with gratitude and inspired me to reach out to each of you. I am facing my share of struggles, but they have not and will not break me. This is only because I have the strongest support system one could hope for. Each of you has made an impact on my life. Each of you has lessened my pain in some way, whether big or small.
A mass message may seem silly, but I felt compelled to offer my thanks. We might not be that close and we might not still be in touch, but I have memories with each of you that make up the person I am today. Many of you do not realize the difference you have made in my life. Things as small as listening to my fears and complaints, driving me to doctor appointments, making me smile and making me laugh, encouraging me, dancing with me, holding me, helping me catch up with my work, and many many others. The little things matter. And they have been my best medicine over the past two years.
As I sit here today, I am more at peace than I have ever been. And it's because I know what ever mountain lies in my path ahead, I don't have to climb it alone. I wish I could give back to each of you the strength you have given me. I am so grateful. Thank you.
Have a great day and don't forget to vote!
Sunday, October 11, 2009
Bump in the road
Again, I am sorry about the lack of updates. Things have been pretty crazy recently. While I was dealing with the increased pain in my hip, I also got sick. It is a very long story that's not relevant to this site, but the short version is I went on antibiotics for tonsillitis, and then 5 days later had to go to the emergency room because they swelled up more, hurt a lot, and I was having difficulty breathing. Turns out they were starting to close my air passageway. I spent a week at home on steroids and a stronger antibiotic. Finally I am off medication and can put it behind me. The good news is I was forced to take a week off from life and spent the time with my family, sleeping on our couch downstairs. It also taught me the importance of not running myself down. I have a lot on my plate at school and it piles up. It literally took two doctors and an ER visit to force me to stop and relax.
The funny part of this story is that the steroids I was on for the tonsillitis have helped my hip calm down even more. I also felt that the week off from all my obligations has made me a lot healthier. Now the problem is I'm trying to catch up on everything that I missed. And, I will be getting my tonsils out in November, which is a surgery that I need to be home for two whole weeks. Luckily my professors are very understanding, I just need to make it through this year so I can graduate.
As far as my progress is going- I went to physical therapy last week and the difference in results was incredible. I'm having a much easier time sitting, and this time when I got my period, I didn't have any of the usual painful symptoms that escalate everything. There has been definite improvement. Now I am allowed to go back on the elliptical about three times a week, slowly, for about 15 minutes. I am also supposed to start up the dilators again, starting from the smallest size, and doing my hip stretches while using them. This I will start in a few days once I feel completely recovered.
Other than that, life in general has been pretty great. I feel like I'm on an upward swing. I'm also trying to appreciate every moment. If you want an inspirational song- check out Terra Naomi's, "Say it's Possible." It's good stuff. More exciting is I have emailed her and she is now coming to school to perform a benefit concert on November 2nd!
The funny part of this story is that the steroids I was on for the tonsillitis have helped my hip calm down even more. I also felt that the week off from all my obligations has made me a lot healthier. Now the problem is I'm trying to catch up on everything that I missed. And, I will be getting my tonsils out in November, which is a surgery that I need to be home for two whole weeks. Luckily my professors are very understanding, I just need to make it through this year so I can graduate.
As far as my progress is going- I went to physical therapy last week and the difference in results was incredible. I'm having a much easier time sitting, and this time when I got my period, I didn't have any of the usual painful symptoms that escalate everything. There has been definite improvement. Now I am allowed to go back on the elliptical about three times a week, slowly, for about 15 minutes. I am also supposed to start up the dilators again, starting from the smallest size, and doing my hip stretches while using them. This I will start in a few days once I feel completely recovered.
Other than that, life in general has been pretty great. I feel like I'm on an upward swing. I'm also trying to appreciate every moment. If you want an inspirational song- check out Terra Naomi's, "Say it's Possible." It's good stuff. More exciting is I have emailed her and she is now coming to school to perform a benefit concert on November 2nd!
Tuesday, September 22, 2009
More Obstacles
It's been a rough couple of days. I went to PT again this Monday in NY. We did some extensive work on everything, including my hip. Stacey told me I might feel very sore later on because my muscles were worked very hard.
During my night class I started to get a shooting pain coming from my hip. It was too much to bear so I caught the eye of my teacher and left the room. She shortly followed and we came up with a plan. First I called my PT to make sure this was not abnormal. Turns out the sharp pain was still due to the physical therapy in the morning. So we got me downstairs into an office and for the rest of class I was able to ice my hip and take 4 advil which brought significant relief.
I'm so grateful for everyone who helped me yesterday, specifically my teacher for being understanding and helpful. And also to one of my friends who stayed with me for hours, brought me dinner, and got me back to my room. I'm so tired of getting help, but it's a relief to know that I have friends who are always ready to offer it.
I've been trying to take it very easy since yesterday. I only sit when I'm in class, and try to keep my hip straight. I'm also going to my athletic trainer at school every morning to get ice and stim, as well as ultrasound, and then to get my lower back taped like I showed in earlier posts. I think these treatments are working and helping to calm down the inflamation. I still feel a soreness today, but at least the direct pain is gone.
I'm also still having some burning and discomfort while sitting, but only after longer periods of time. I have a three hour class that is a bit of a chore to get through, but at least it's interesting. I definitely see some improvement from last week though. I just have to be patient.
The silver lining in all of this is that what changed recently was that my hip got very inflamed and started to hurt, which was a catalyst to all my other problems. This shows the direct correlation between my hip and pelvic/sitting pain. So, I'm becoming more and more convinced that once my hip is healed completely and as long as I keep working hard at physical therapy, I can put this whole experience behind me. Hope everyone is doing well.
During my night class I started to get a shooting pain coming from my hip. It was too much to bear so I caught the eye of my teacher and left the room. She shortly followed and we came up with a plan. First I called my PT to make sure this was not abnormal. Turns out the sharp pain was still due to the physical therapy in the morning. So we got me downstairs into an office and for the rest of class I was able to ice my hip and take 4 advil which brought significant relief.
I'm so grateful for everyone who helped me yesterday, specifically my teacher for being understanding and helpful. And also to one of my friends who stayed with me for hours, brought me dinner, and got me back to my room. I'm so tired of getting help, but it's a relief to know that I have friends who are always ready to offer it.
I've been trying to take it very easy since yesterday. I only sit when I'm in class, and try to keep my hip straight. I'm also going to my athletic trainer at school every morning to get ice and stim, as well as ultrasound, and then to get my lower back taped like I showed in earlier posts. I think these treatments are working and helping to calm down the inflamation. I still feel a soreness today, but at least the direct pain is gone.
I'm also still having some burning and discomfort while sitting, but only after longer periods of time. I have a three hour class that is a bit of a chore to get through, but at least it's interesting. I definitely see some improvement from last week though. I just have to be patient.
The silver lining in all of this is that what changed recently was that my hip got very inflamed and started to hurt, which was a catalyst to all my other problems. This shows the direct correlation between my hip and pelvic/sitting pain. So, I'm becoming more and more convinced that once my hip is healed completely and as long as I keep working hard at physical therapy, I can put this whole experience behind me. Hope everyone is doing well.
Thursday, September 17, 2009
Taking a step back
I apologize again for not updating- it's been a crazy couple of weeks. The biggest news is that after this past weekend, I am unable to play tennis anymore this season. My hip could not take three days in a row and is inflamed and very irritated right now. I'm pretty upset because I worked so hard this past summer to be able to play and compete at regionals, and now I have to stop one week shy of my goal. But, I guess there's always next season. And I know there's more to life than college tennis.
Due to the inflamed hip I have experienced an escalation in all my other issues. I'm having difficulty sitting, as well as sharp vaginal and rectal pains. Although it's hard to deal with it, it's a little comforting to see the connection between my hip and my pain. I still think I'm on the right track. I also haven't been able to get up to New York, so I'm sure that contributed.
Thankfully, I was able to see Stacey today and she released me rectally. I felt some immediate relief, but everything is still very tight and painful. I'm seeing her again Monday, so I just have to be patient and work through this low.
So the new plan is to give my hip a break for a month. I obviously pushed it too hard, so as hard as it will be, I will rest it. No tennis, no dancing, no climbing, no running. I can still work out, but only my core and my upper body. It's very hard for me to sit and do nothing- I'd much rather take a proactive role when it comes to physical therapy. But it seems like this is what I need right now. I'll have to settle for reading climbing books and daydreaming about mountains.
Due to the inflamed hip I have experienced an escalation in all my other issues. I'm having difficulty sitting, as well as sharp vaginal and rectal pains. Although it's hard to deal with it, it's a little comforting to see the connection between my hip and my pain. I still think I'm on the right track. I also haven't been able to get up to New York, so I'm sure that contributed.
Thankfully, I was able to see Stacey today and she released me rectally. I felt some immediate relief, but everything is still very tight and painful. I'm seeing her again Monday, so I just have to be patient and work through this low.
So the new plan is to give my hip a break for a month. I obviously pushed it too hard, so as hard as it will be, I will rest it. No tennis, no dancing, no climbing, no running. I can still work out, but only my core and my upper body. It's very hard for me to sit and do nothing- I'd much rather take a proactive role when it comes to physical therapy. But it seems like this is what I need right now. I'll have to settle for reading climbing books and daydreaming about mountains.
Monday, August 24, 2009
Estrogen compound/More appts
Things have been very hectic the past few weeks. Summer came to a close and I launched headfirst into my jobs, school, and tennis. There are a couple things to report. First, I was contacted by Wellsphere to be a featured healthblogger. I'm pretty excited for the opportunity and ask you to check out their website and their community for any health questions or issues you might be having. I'm also happy to report that after visiting my surgeon last week that I was given the green light. He was very impressed with my recovery. While I'm not at 100%, I can be active again without being afraid of re-tearing my hip. I am still going to physical therapy three times a week and now will be playing tennis around 4-5 times a week and going to the gym twice a week. Although I have the green light, I am still being cautious about my activities. If at any point my hip hurts, I will stop, and if it's sore the next day, I know to take it down a notch.
I'm very proud that I have gotten to this point. Now that I can go back to tennis and dancing and rock climbing, I feel a lot more like myself. I feel like everything is coming back together.
As far as other things, I'm feeling pretty good. Again, it was the time in my cycle so I experienced increased pain levels and had problems sitting. But I'm continuing to see improvements. After my last exam we noticed my skin is very thing towards the very bottom of the vulva. So I'm going to make an appointment back with Dr. Nyirjesy in Philadelphia so I can get an estrogen/testosterone cream compounded, test my hormone levels, and get a liquid lidocaine to use for my dilator exercises. I'll try to see him by the end of September and hopefully get my skin back to a healthy level. I think using that along with the continued physical therapy will put me on a good track. I know it might take a year, but I don't mind waiting as long as I continue to see progress.
I'm very proud that I have gotten to this point. Now that I can go back to tennis and dancing and rock climbing, I feel a lot more like myself. I feel like everything is coming back together.
As far as other things, I'm feeling pretty good. Again, it was the time in my cycle so I experienced increased pain levels and had problems sitting. But I'm continuing to see improvements. After my last exam we noticed my skin is very thing towards the very bottom of the vulva. So I'm going to make an appointment back with Dr. Nyirjesy in Philadelphia so I can get an estrogen/testosterone cream compounded, test my hormone levels, and get a liquid lidocaine to use for my dilator exercises. I'll try to see him by the end of September and hopefully get my skin back to a healthy level. I think using that along with the continued physical therapy will put me on a good track. I know it might take a year, but I don't mind waiting as long as I continue to see progress.
Wednesday, August 5, 2009
Progress
It's amazing what can happen in a week. I've been taking antibiodics and they have done their job. I feel so much better- back to where I was last Wednesday. The tissue also looks much better. I got the results back from my culture and it turns out it was positive for yeast. So to be on the safe side I am going back on Friday to get another culture and make sure it has completely gone away. I don't want anymore setbacks.
Physical therapy went really well today. Sitting has been difficult, but it just feels like my muscles are so incredibly tense and tight. And when we do vaginal and rectal release, I do notice a huge difference week to week, and especially since before my hip surgery. So I think we're finally getting somewhere and I'll just continue to be patient. My hip is still very weak, but I am trying my best to get better before the fall tennis season so I can play doubles.
Right now I have 4 or 5 stretches that I have to start doing twice a day. I'm also going back to using the dilators and have stretches to do while I'm using them every other day.
Also, if you don't know already, this Friday night there is a primetime special about vulvodynia. I have no idea what they are going to talk about, but I'm sure it will be interesting. One of the physical therapists talking is from Beyond Basics in NYC where I go every week. I've pasted the information below.
Physical therapy went really well today. Sitting has been difficult, but it just feels like my muscles are so incredibly tense and tight. And when we do vaginal and rectal release, I do notice a huge difference week to week, and especially since before my hip surgery. So I think we're finally getting somewhere and I'll just continue to be patient. My hip is still very weak, but I am trying my best to get better before the fall tennis season so I can play doubles.
Right now I have 4 or 5 stretches that I have to start doing twice a day. I'm also going back to using the dilators and have stretches to do while I'm using them every other day.
Also, if you don't know already, this Friday night there is a primetime special about vulvodynia. I have no idea what they are going to talk about, but I'm sure it will be interesting. One of the physical therapists talking is from Beyond Basics in NYC where I go every week. I've pasted the information below.
"For those interested in learning more about vulvodynia and sexual pain, 20/20 will be airing a segment at 10 p.m. EST, Aug. 7
ABC News' Chief Medical Editor, Dr. Timothy Johnson, will discuss the diagnosis and treatment of sexual pain disorders and vulvodynia with Andrew Goldstein, MD, and Amy Stein, MPT. Dr. Goldstein is the director for the Center for Vulvovaginal Disorders in Washington, DC, and New York City. Ms. Stein, is a New York-based physical therapist, who specializes in the treatment of pelvic and urogynecological pain disorders.
The segment will also feature the stories of two women with sexual pain, as well as an interview with Christin Veasley, NVA's associate executive director, and her husband Melvin. We have worked closely with the National Vulvodynia Association and they are a wonderful organization.
For more, visit http://abcnews.go.com/2020/
or visit: http://www.tvguide.com/Listings/default.aspx."
Wednesday, July 29, 2009
Infection
Today was not a good day. I have been in a lot of pain recently, especially sitting. But that increase was due to having and getting over my period. However, I've had itching and burning as of late last night. This morning I was fairly certain I had an infection- I had a lot of vaginal pain that I don't normally have, and siting was almost unbearable. I went into NY for PT as per usual, but ended up taking a bus back to my house to go to the gynecologist.
I was already in a bad mood at the gynecologist because frankly, I have enough vagina issues to handle right now. The over-peppy receptionist and nurse almost set me over the edge. I had a new gynecologist since I was rushed in, so she knew nothing about me. Not really in the mood to give her my whole history, I just told her what I had and could she please use the smallest size and be careful? She replied by asking what they put me on for vvs. I just looked at her blankly. Does she really think there's a magic pill out there that we can all take? Great- why don't you just prescribe me that now and I can stop wasting my time at all these different specialists. She was so oblivious to everything, so I just told her I've gone through a lot of different things and left it at that. It's so frustrating when gynecologists aren't even informed. I was pretty upset after she left the room and needed a couple of minutes to pull myself together.
It looks like I have a bacterial infection. Joy. I'm on two medications for the next week and a half and should be better by then. This is highly inconvenient because I can't have surgery while I'm on antibiodics, so I'll have to push back my toe surgery. I also can't have alcohol, and boy would I like a drink right now.
I'm just so sick of it. A whole day spent running around to doctors. And more pain for me to put up with. I'm just going to play the life's not fair card tonight and then take it on tomorrow.
Thursday, July 23, 2009
Update
Everything seems to be going well with my recovery. I go to physical therapy right by school three times a week and go into NY to see Stacey once a week. Both of my physical therapists are communicating together to come up with a good plan for me. I have laid off working on my hip right now and have been spending a lot of time on core stabilization. This way I won't tighten my pelvic floor when working out.
I still do cardio- so I go on the stair master for 15 minutes and then the treadmill. Sometimes I also do the elliptical at school. I can only walk on the treadmill, but I make sure to make it difficult for myself. I generally walk a mile after the stair master, doing each lap at 4.1, 4.2, 4.3, and finally 4.4 which brings me to about a 14:15 mile. I also do another mile at the end of my workout. This way I still feel like I'm doing something. At this point I'm dying to go back to hiking, rock climbing, and dancing, but I know it's too soon. And the last thing I want is to make it worse and have to repeat this long process.
I also think my sitting pain has gotten better- I'm slowly seeing results. Right now I'm in a lot of pain, but I think it's just because it's almost my time of the month. I'm also pretty sore today after manual therapy. We are still noticing a huge difference in my side- my right tissue is so much better than my left. So this is pretty promising. My left hip was operated on and is still in the recovering stage.
In other news, it looks like I'm also going to be in a case study of about 10 participants who have had labral tears in their hip related to pelvic pain. There's a conference on Vulvovaginal Pain in the fall, and the hope is to present these findings then. I'm so thrilled that this information is finally getting out there. So many gynecologists and surgeons and specialists just look at the specific area that is in pain and refuse to acknowledge the rest of your body. I might not have had a noticeable pain in my hip for years, so I am so glad it was caught now. Research is so important because there are still many questions left unanswered.
I still do cardio- so I go on the stair master for 15 minutes and then the treadmill. Sometimes I also do the elliptical at school. I can only walk on the treadmill, but I make sure to make it difficult for myself. I generally walk a mile after the stair master, doing each lap at 4.1, 4.2, 4.3, and finally 4.4 which brings me to about a 14:15 mile. I also do another mile at the end of my workout. This way I still feel like I'm doing something. At this point I'm dying to go back to hiking, rock climbing, and dancing, but I know it's too soon. And the last thing I want is to make it worse and have to repeat this long process.
I also think my sitting pain has gotten better- I'm slowly seeing results. Right now I'm in a lot of pain, but I think it's just because it's almost my time of the month. I'm also pretty sore today after manual therapy. We are still noticing a huge difference in my side- my right tissue is so much better than my left. So this is pretty promising. My left hip was operated on and is still in the recovering stage.
In other news, it looks like I'm also going to be in a case study of about 10 participants who have had labral tears in their hip related to pelvic pain. There's a conference on Vulvovaginal Pain in the fall, and the hope is to present these findings then. I'm so thrilled that this information is finally getting out there. So many gynecologists and surgeons and specialists just look at the specific area that is in pain and refuse to acknowledge the rest of your body. I might not have had a noticeable pain in my hip for years, so I am so glad it was caught now. Research is so important because there are still many questions left unanswered.
Wednesday, July 15, 2009
A lot of people have been reaching out to me recently, and I realized that I didn't have an email on this site for anyone to get in contact with me. If you ever need to talk to someone or have questions, please contact me at tamravv@gmail.com and I will get back to you as soon as possible.
Monday, July 13, 2009
Beginning of PT, tape, and core stabilization
I apologize for the influx of posts all of a sudden- but I figured this information was pretty relevant, so bear with me. It's been especially great being in contact with so many of you who are going through almost the exact same thing as me. It's comforting just waking up in the morning and knowing I'm not doing this alone.
Today I started my PT with Stacey in NYC (again, doing this once a week and going to regular PT three times a week.) Again, we worked on release, as well as sitting correctly. I really have to focus on things as small as sitting. Number one- no crossing my legs. Number two- I have to focus on moving my pelvis down, and not crunching it up. To help with all of this, I got taped up today, which you can see above. Just imagine the tape running down even lower. It's very tight and really restricts my movement. It forces me to sit up correctly, as well as keep my pelvis pointed downward. I'm going to try and get taped up everytime I go to PT, so hopefully wearing it 4 times a week will help.
After all of this, I now have 3 core stabilization exercises to work on. They are a bit difficult to write out so if you would like to know more, just leave a comment and I'll do my best to explain.
Today I started my PT with Stacey in NYC (again, doing this once a week and going to regular PT three times a week.) Again, we worked on release, as well as sitting correctly. I really have to focus on things as small as sitting. Number one- no crossing my legs. Number two- I have to focus on moving my pelvis down, and not crunching it up. To help with all of this, I got taped up today, which you can see above. Just imagine the tape running down even lower. It's very tight and really restricts my movement. It forces me to sit up correctly, as well as keep my pelvis pointed downward. I'm going to try and get taped up everytime I go to PT, so hopefully wearing it 4 times a week will help.
After all of this, I now have 3 core stabilization exercises to work on. They are a bit difficult to write out so if you would like to know more, just leave a comment and I'll do my best to explain.
Of Lidocaine patches, PT, and mountains
I just wanted to take a moment and really commend The Hospital for Special Surgery in NYC. These people really know how to run their hospital. I can get in touch with my surgeon at any time, can get prescriptions, notes, etc. They are fast, efficient, and just really on top of their game.
Stacey recommended I start using Lidocaine patches, so sitting can be less painful. I just got the prescription filled and have worn them twice. You can wear up to three patches on the area for 12 hours on and then 12 hours off. So far I think they do work and provide some relief. I'm using two right now and have cut each in half to cover more area. I'm riding on the train today to do PT, so we'll see how well they work then.
I also am able to start the elliptical and stair master at my regular PT now. Going on the stair master last week gave me such motivation. If I closed my eyes, I could have imagined I was just hiking up a mountain and everything was fine again. I've been talking to some people recently and have discovered why I love mountains so much. They are a huge undertaking, an intense physical challenge, however there's a very straight forward way of overcoming this challenge. Sure you can go off the trail and use advanced mountaineering skills, but when it comes down to it, you know you just have to climb up and make it to the top. And there's no better feeling once you summit and have accomplished the long hours of climbing. And there's no better feeling once you have returned down the mountain and stare up at the physical representation of your efforts, standing tall and still right in front of you. I've had to deal with so many of my own physical challenges in the past few years, and there hasn't been a clear way to overcome them- I can't see the way up, which is why I get so frustrated. This is the first time in a long time I think the fog is finally lifting and I'm beginning to see the trail.
Stacey recommended I start using Lidocaine patches, so sitting can be less painful. I just got the prescription filled and have worn them twice. You can wear up to three patches on the area for 12 hours on and then 12 hours off. So far I think they do work and provide some relief. I'm using two right now and have cut each in half to cover more area. I'm riding on the train today to do PT, so we'll see how well they work then.
I also am able to start the elliptical and stair master at my regular PT now. Going on the stair master last week gave me such motivation. If I closed my eyes, I could have imagined I was just hiking up a mountain and everything was fine again. I've been talking to some people recently and have discovered why I love mountains so much. They are a huge undertaking, an intense physical challenge, however there's a very straight forward way of overcoming this challenge. Sure you can go off the trail and use advanced mountaineering skills, but when it comes down to it, you know you just have to climb up and make it to the top. And there's no better feeling once you summit and have accomplished the long hours of climbing. And there's no better feeling once you have returned down the mountain and stare up at the physical representation of your efforts, standing tall and still right in front of you. I've had to deal with so many of my own physical challenges in the past few years, and there hasn't been a clear way to overcome them- I can't see the way up, which is why I get so frustrated. This is the first time in a long time I think the fog is finally lifting and I'm beginning to see the trail.
Wednesday, July 8, 2009
7 weeks post-surgery
This past Monday I spent all day in the New York finding out some new information. First I went to see Dr. Coleman, my hip surgeon. This is now 7 weeks post surgery, and he wanted to check in on how I was doing. The good news is he's very pleased with my progress. All my hard work seems to be paying off. I'm doing very well and he gave me permission to start hitting tennis balls again. I can't serve, but I can hit groundstrokes and volley. And then in a month I'll be able to start running. So it looks like I'll be able to play in the fall- I'm only going to play doubles, but that's fine with me. At least my life is getting some semblance of normalcy. I'm also allowed to start the elliptical as cardio now, so I can get off the bike. I'm not sure if the bike was making things worse for me, but I know it wasn't the best.
Sitting has become very difficult the past couple of weeks. It's been very painful and has moved to my buttock region, so right on the bones I sit on. I was pretty upset about the increase in pain, but after seeing Stacey, I feel much more relieved. Right after Dr. Coleman, I went to see her and she did an exterior, vaginal, and anal examination to see if I felt any different. She also made a great point that even though my pain has gotten worse, it has also moved right after surgery, which means the hip does have a strong connection to my pain. Now that I'm starting back from step 1, I just have to rebuild and retrain my muscles so that I can finally release my pelvic floor. This will apparently take up to a year, but I just have to be patient. I don't care if it takes a year, as long as I know this is what I have to do, that's fine. I just need a clear-cut path set before me.
The great news is when Stacey did the vaginal examination, it felt so much different. There was a little pain upon penetration, but compared to what it used to feel like, it was incredible! I had tensed up and was preparing myself for the worst, but it didn't happen. She also did a lot of work releasing my posterior muscles, because that's where all my pain seems to stem from now. And again, these muscles wrap around and reach the front of your pelvis, which is why I'm also having vaginal pain at the bottom of my vulva. The anal examination and release was pretty difficult to tolerate. It's definitely more painful, but it got better as the muscles were released. But that's definitely where my biggest problems are right now.
After that we worked on some core stablization exercises. My biggest problem is I've been working very hard at physical therapy for my hip. In doing this, I've been training the wrong way. When I lift weights or do cardio, I tighten my pelvic floor instead of my abs. At this point my pelvis floor is constantly tightened and does all the work for me, which is why I'm having such problems sitting. So we're trying to retrain my ab muscles to do all the work. Stacey says my abs are not as strong as they should be because they haven't been doing the work. We tried doing very basic exercises, which I'm having lots of problems doing, because my pelvic floor is just used to being so tight all the time.
When I had gone in for my appointment, I had told Stacey that my pain level was about an 8 sitting, and after the hour was up, I was around a 1 or 2 sitting. It was wonderful. It lasted a significant about of time too. The train ride home was a lot easier. These past two days I have seemed to return to my original pain levels, but at least I'm taking steps in the right direction. I'm going to start going to NY for PT once a week to work on this, as well as my regular PT three times a week for my hip. It's going to be hectic, but so worth it in the end.
As always, let me know if you have any questions. And for my friends also going through post-surgery recovery right now, keep on fighting!
Sitting has become very difficult the past couple of weeks. It's been very painful and has moved to my buttock region, so right on the bones I sit on. I was pretty upset about the increase in pain, but after seeing Stacey, I feel much more relieved. Right after Dr. Coleman, I went to see her and she did an exterior, vaginal, and anal examination to see if I felt any different. She also made a great point that even though my pain has gotten worse, it has also moved right after surgery, which means the hip does have a strong connection to my pain. Now that I'm starting back from step 1, I just have to rebuild and retrain my muscles so that I can finally release my pelvic floor. This will apparently take up to a year, but I just have to be patient. I don't care if it takes a year, as long as I know this is what I have to do, that's fine. I just need a clear-cut path set before me.
The great news is when Stacey did the vaginal examination, it felt so much different. There was a little pain upon penetration, but compared to what it used to feel like, it was incredible! I had tensed up and was preparing myself for the worst, but it didn't happen. She also did a lot of work releasing my posterior muscles, because that's where all my pain seems to stem from now. And again, these muscles wrap around and reach the front of your pelvis, which is why I'm also having vaginal pain at the bottom of my vulva. The anal examination and release was pretty difficult to tolerate. It's definitely more painful, but it got better as the muscles were released. But that's definitely where my biggest problems are right now.
After that we worked on some core stablization exercises. My biggest problem is I've been working very hard at physical therapy for my hip. In doing this, I've been training the wrong way. When I lift weights or do cardio, I tighten my pelvic floor instead of my abs. At this point my pelvis floor is constantly tightened and does all the work for me, which is why I'm having such problems sitting. So we're trying to retrain my ab muscles to do all the work. Stacey says my abs are not as strong as they should be because they haven't been doing the work. We tried doing very basic exercises, which I'm having lots of problems doing, because my pelvic floor is just used to being so tight all the time.
When I had gone in for my appointment, I had told Stacey that my pain level was about an 8 sitting, and after the hour was up, I was around a 1 or 2 sitting. It was wonderful. It lasted a significant about of time too. The train ride home was a lot easier. These past two days I have seemed to return to my original pain levels, but at least I'm taking steps in the right direction. I'm going to start going to NY for PT once a week to work on this, as well as my regular PT three times a week for my hip. It's going to be hectic, but so worth it in the end.
As always, let me know if you have any questions. And for my friends also going through post-surgery recovery right now, keep on fighting!
Monday, June 8, 2009
Physical Therapy
I apologize for the lack of updating- I've been quite busy recently with work and physical therapy. So I'll quickly catch you up. I was on my couch, not really able to move much for two weeks. By the middle of that second week, I could climb stairs pretty well with my crutches and slept in my own bed. My stitches were removed which relieved a lot of the pain and tension on my hip. I was prescribed pain killers, but stopped taking them after the first few days because I could handle the pain and discomfort I was in. I did continue to take the anti-inflammatory medication for a week and half until the swelling went down. I finally started physical therapy at the end of May and am currently going three times a week at Pinnacle Physical Therapy in Lawrenceville. It's very convenient because it is ten minutes away from school. I am also very impressed with them. My PT is committed to work me hard and try and reach our goal of getting me ready for the fall tennis season. I understand I will not be playing singles, but I really hope to be able to play doubles and then recover for the spring season.
At this point I am able to ride a bike and then do various other exercises to increase the strength, flexibility, and mobility of my hip. Even better, I stay after my hour of therapy to do extra work and work with my PT to increase my upper body strength and my abs. Since it is very frustrating to be so limited in my lower body, it's nice to go all out and push myself on my upper body. This way I use that determination to strengthen my arms and not make my hip worse. I still have to be very cautious in everything I do so I do not re-tear it and start back from step one.
I was on crutches for three weeks, and then used a cane, and finally am walking with my two legs as of this past Friday. Although it's very frustrating that I cannot run or even walk on a treadmill, I'm finding other ways to keep active and get in shape. This is the schedule I have set up for myself that coincides with my work schedule. I go to physical therapy three times a week. I do my physical therapy exercises every day. I go to the gym at school three times a week and swim laps in the pool three to four times a week. I do this by putting this foam buoy between my legs, so I am solely using my arms and abs to swim. I also have water exercises I can do, such as walking forwards, backwards, and doing leg raises, using the water as resistance.
Every one keeps asking me if I have noticed any changes in my vaginal pain level or if sitting has gotten easier. Unfortunately, I do not have good news yet. In fact, I've noticed my pain level has gone up a bit. However, I have also been told not to lose hope because results aren't going to come overnight. Most see them anywhere from three months to a year post surgery. I'll be interested to see how my appointments go in the beginning of July. I go into the city for a follow-up with my surgeon, as well as a check-up with Stacey to see if things have improved. So right now I am not dwelling on any pain I may be feeling. I am just doing my best at physical therapy and trying to recuperate. Let me know if there are any questions.
At this point I am able to ride a bike and then do various other exercises to increase the strength, flexibility, and mobility of my hip. Even better, I stay after my hour of therapy to do extra work and work with my PT to increase my upper body strength and my abs. Since it is very frustrating to be so limited in my lower body, it's nice to go all out and push myself on my upper body. This way I use that determination to strengthen my arms and not make my hip worse. I still have to be very cautious in everything I do so I do not re-tear it and start back from step one.
I was on crutches for three weeks, and then used a cane, and finally am walking with my two legs as of this past Friday. Although it's very frustrating that I cannot run or even walk on a treadmill, I'm finding other ways to keep active and get in shape. This is the schedule I have set up for myself that coincides with my work schedule. I go to physical therapy three times a week. I do my physical therapy exercises every day. I go to the gym at school three times a week and swim laps in the pool three to four times a week. I do this by putting this foam buoy between my legs, so I am solely using my arms and abs to swim. I also have water exercises I can do, such as walking forwards, backwards, and doing leg raises, using the water as resistance.
Every one keeps asking me if I have noticed any changes in my vaginal pain level or if sitting has gotten easier. Unfortunately, I do not have good news yet. In fact, I've noticed my pain level has gone up a bit. However, I have also been told not to lose hope because results aren't going to come overnight. Most see them anywhere from three months to a year post surgery. I'll be interested to see how my appointments go in the beginning of July. I go into the city for a follow-up with my surgeon, as well as a check-up with Stacey to see if things have improved. So right now I am not dwelling on any pain I may be feeling. I am just doing my best at physical therapy and trying to recuperate. Let me know if there are any questions.
Friday, May 15, 2009
Surgery
I have been asked by a few people to go into detail about my surgery, so this post is for them. This past Tuesday I went into the city for arthroscopic hip surgery. I was beyond impressed with The Hospital for Special Surgery. They did not keep me waiting once I arrived with my parents. They had a physical therapist meet me and go over how to walk on my crutches after surgery. Then, I filled out some paperwork and they brought me back to get started for the surgery. We had to do a urine test and then I went into my own room to get changed into their hospital gown and cap. While this was all going on, countless people kept coming in my room and introducing themselves to me. I met with my anesthesiologist who explained everything they would be doing. I also met with his assistant who asked if I would participate in a drug study for nausea medication. It seems like 50% of hip patients get severe nausea post-surgery, so I would be taking anti-nausea medication for two days afterwords to see if it made a difference.
My parents were allowed into the room, so we all stayed together before I had to go into surgery. One nurse came to ask about my entire medical history, another one came to put the IV in. Dr. Coleman also came in to answer any last minute questions. Then before I knew it, it was time to go. I walked myself to the operating room and laid down on the table. My anesthesiologist was there and proceeded to give me medicine through the IV so that I would sleep. When I was asleep, I was then picked up and given a spinal injection to numb me from the waist down. Dr. Coleman then made three incisions in my left hip and went to work.
After I fell asleep on the table, the next thing I remember was waking up in the recovery room. Apparently I had already talked to Dr. Coleman and a lot of nurses, but I don't remember those interactions. I woke up in a lot of pain, so I was given a lot of medicine. I actually had no signs of headaches or nausea, and just had to wait for my parents to fill my prescriptions. Because of all the pain medication, everything else is a little fuzzy. Somehow I ended up in a wheelchair and was brought down to the ground level and put in my car.
The interesting part about this surgery was the size of my tear. Dr. Coleman said it was the largest labral tear he has ever seen- and he's done quite a number of hip surgeries. He told my parents it was no wonder I was having such pain sitting and he was impressed I was playing tennis competitively for so long. Because it was much bigger than expected, the pain is worse and my recovery time is much longer. However, I think it's great news. I really think everything is inter-connected and I'm finally on the road to recovery.
I've spent the past two days on my couch. As the days go on, it gets easier and easier. The first day my mom had to push my leg so I could get up to go to the bathroom. Now I still need help getting up, but I can move my leg on my own. The first day it also felt like an axe was stuck in my side. Now the pain is slowly going away. I should be on crutches for 2-3 weeks. I'm getting my stitches out next week and should be starting physical therapy shortly after. I'm eager to start recuperating. I must admit, I'm already getting tired of the couch. I don't do well sitting in one place. Let me know if there's any questions I can answer!
My parents were allowed into the room, so we all stayed together before I had to go into surgery. One nurse came to ask about my entire medical history, another one came to put the IV in. Dr. Coleman also came in to answer any last minute questions. Then before I knew it, it was time to go. I walked myself to the operating room and laid down on the table. My anesthesiologist was there and proceeded to give me medicine through the IV so that I would sleep. When I was asleep, I was then picked up and given a spinal injection to numb me from the waist down. Dr. Coleman then made three incisions in my left hip and went to work.
After I fell asleep on the table, the next thing I remember was waking up in the recovery room. Apparently I had already talked to Dr. Coleman and a lot of nurses, but I don't remember those interactions. I woke up in a lot of pain, so I was given a lot of medicine. I actually had no signs of headaches or nausea, and just had to wait for my parents to fill my prescriptions. Because of all the pain medication, everything else is a little fuzzy. Somehow I ended up in a wheelchair and was brought down to the ground level and put in my car.
The interesting part about this surgery was the size of my tear. Dr. Coleman said it was the largest labral tear he has ever seen- and he's done quite a number of hip surgeries. He told my parents it was no wonder I was having such pain sitting and he was impressed I was playing tennis competitively for so long. Because it was much bigger than expected, the pain is worse and my recovery time is much longer. However, I think it's great news. I really think everything is inter-connected and I'm finally on the road to recovery.
I've spent the past two days on my couch. As the days go on, it gets easier and easier. The first day my mom had to push my leg so I could get up to go to the bathroom. Now I still need help getting up, but I can move my leg on my own. The first day it also felt like an axe was stuck in my side. Now the pain is slowly going away. I should be on crutches for 2-3 weeks. I'm getting my stitches out next week and should be starting physical therapy shortly after. I'm eager to start recuperating. I must admit, I'm already getting tired of the couch. I don't do well sitting in one place. Let me know if there's any questions I can answer!
Wednesday, April 1, 2009
Surgery is set
Today I went into NYC yet again to meet with Dr. Coleman, my hip surgeon. It was a very long day- 8 hours in all, so I'm so thankful my mom came with me this time. Dr. Coleman was very friendly and informative. We looked at my MRI's and x-rays. So again, I do have a significant labral tear that needs to be fixed. It's been there for a couple of years, but the speculation is it was small and has gotten significantly worse the past year. It has occurred because my femoral head is in the socket, but angled slightly forward, causing me to walk with a foot inversion. It also then causes the head to scrape against the tissue, creating the tear. I also have an eroded pubic bone that has been apparently since my early teens. And that has very likely caused scar tissue to form around my pelvis region.
So, after being examined and going over a lot of information, we scheduled a hip arthroscopy for May 12th. I'm getting it right after my tennis season ends. It's a one day procedure and I'll be on crutches for a week and then I start physical therapy twice a week. I'm also not allowed to do physical activity for around 3 to 3 and a half months. So that means no running, no tennis, no water skiing, no paragliding, no rock climbing, no hiking, no dancing this summer and possibly part of next semester. It's upsetting, but at least I'm finally getting answers. Dr. Coleman has operated on 6 or 7 patients with vulvar vestibulitis in the past, and the surgery has caused most of them to be completely better. He is a hesitant to make any promises, especially since my cortizone injection didn't provide me with any vaginal pain relief. However, some of his patients also didn't get relief from the injections, but the surgery still eliminated all of their pain.
I spoke with my mom on the train ride home, and here are our best speculations. I think the hip arthroscopy is going to fix my problems with sitting down, and all the pain coming from my rear end. However, I think I still might have the sharp localized pain in my vulva, which I think is being caused by the scar tissue from my pubic bone. Dr. Coleman recommended ANOTHER doctor that I should see that specialized in the pubic bone. He's going to inform him of my case and see what he says. We're not entirely sure how you fix a pubic bone, so I'm interested to see what my options are. As nice as it would be to have this arthroscopy fix both of my problems, I might have two different issues to deal with.
So that's it for now. Now that the date is set, I am going to cross my fingers and hope this is the answer I've been waiting for.
So, after being examined and going over a lot of information, we scheduled a hip arthroscopy for May 12th. I'm getting it right after my tennis season ends. It's a one day procedure and I'll be on crutches for a week and then I start physical therapy twice a week. I'm also not allowed to do physical activity for around 3 to 3 and a half months. So that means no running, no tennis, no water skiing, no paragliding, no rock climbing, no hiking, no dancing this summer and possibly part of next semester. It's upsetting, but at least I'm finally getting answers. Dr. Coleman has operated on 6 or 7 patients with vulvar vestibulitis in the past, and the surgery has caused most of them to be completely better. He is a hesitant to make any promises, especially since my cortizone injection didn't provide me with any vaginal pain relief. However, some of his patients also didn't get relief from the injections, but the surgery still eliminated all of their pain.
I spoke with my mom on the train ride home, and here are our best speculations. I think the hip arthroscopy is going to fix my problems with sitting down, and all the pain coming from my rear end. However, I think I still might have the sharp localized pain in my vulva, which I think is being caused by the scar tissue from my pubic bone. Dr. Coleman recommended ANOTHER doctor that I should see that specialized in the pubic bone. He's going to inform him of my case and see what he says. We're not entirely sure how you fix a pubic bone, so I'm interested to see what my options are. As nice as it would be to have this arthroscopy fix both of my problems, I might have two different issues to deal with.
So that's it for now. Now that the date is set, I am going to cross my fingers and hope this is the answer I've been waiting for.
Sunday, March 29, 2009
Hip Surgeons
A couple of people have asked me to post the hip surgeons I had looked into. The three listed below all work at The Hospital for Special Surgery and are supposed to be at the top of their fields.
Dr. Brian Kelly
Dr. Struan Coleman
Dr. Friedrich Boettner
I will be seeing Dr. Coleman this Wednesday in NYC- he was the only one who took my insurance. I am interested to see what he says and will update when I get back.
Dr. Brian Kelly
Dr. Struan Coleman
Dr. Friedrich Boettner
I will be seeing Dr. Coleman this Wednesday in NYC- he was the only one who took my insurance. I am interested to see what he says and will update when I get back.
Friday, March 20, 2009
The Seach for Hip Surgeons
It's been awhile since my cortisone injection, and while I have noticed some improvement in the pain of my left hip, I still have vulvar pain and great difficulty sitting down for long periods of time. My frustrations have been building up and so I called Dr. Cooke and obtained three hip surgeon referrals. Of course, none of them accept my insurance, but they specialize in youth and sports related hip tears, so we will probably go out of network. They are all from the Hospital for Special Surgery and apparently that is the place to go.
I haven't made an appointment yet, but I'm sure today I will have to figure out if I'm waiting until May for the end of the tennis season, or if I want the surgery sooner than that. While I'm making big decisions, I found the following information on one of the doctor's websites which just made my eyes light up. It sounds just like me!
I haven't made an appointment yet, but I'm sure today I will have to figure out if I'm waiting until May for the end of the tennis season, or if I want the surgery sooner than that. While I'm making big decisions, I found the following information on one of the doctor's websites which just made my eyes light up. It sounds just like me!
3. How does a labral tear present?
Labral tears most commonly result in "groin" pain. Most patients describe the pain as a sharp pain that is very deep. It tends to hurt more with increased activity, and is very easy to reproduce with high degrees of flexion and internal rotation of the hip joint. Prolonged periods of sitting will result in pain for patients with a condition known as femoroacetabular impingement.
Oftentimes, patients do not complain of a constant pain in the joint, but rather one that comes and goes without warning. Pain is usually located in the anterior region of the hip (groin area).
Less commonly, patients present with posterior (buttock area) or lateral (outside of the hip) pain.
Some complain of pain that wakes them up at night, or pain referred down the leg. These two symptoms tend to be more common in those with arthritis of the hip.
4. Why is it painful?
Patients with labral tear complain of hip pain because the labrum has nerve endings that can stimulate pain fibers, causing pain sensation in the hip region.
Tuesday, March 3, 2009
Cortisone Injection
I apologize for not writing this sooner, but things have gotten hectic at school recently. Last Monday I went in for my cortisone injection. I should have been a little more prepared. I had expected to attend classes that same day, but my doctor wanted me to lie down and stay still for 1-2 days so the medication would work effectively. Monday and Tuesday just happen to be my busiest days of classes, but thankfully my professors are very understanding. I made sure to just lie down both days in order to recover.
Once I got into the office, there was some paperwork to fill out, and then I had to change in the lovely paper gown. They took me into a room with a couple of screen and an x-ray. There were three people there plus me. First they had me lie down and then talked me through the procedure. What happened is Dr. Cooke marked the spot on my hip he was going to inject. It was very high up, right below where my underwear sits. He then took a very large needle and inserted an anesthetic into the area. I'm not going to lie- this was pretty painful. It takes awhile for the needle to get into the proper location and the anesthetic hurts a lot once it is released.
After that, Dr. Cooke injected dye into the area to make sure he would put the cortisone in the proper place. My big mistake was watching him to do all of this on the screens in the room. I do not recommend watching. He had to inject the dye twice til he got the proper area, and then he injected the cortisone. I guess the worst part of the whole thing was that it took about 15 minutes, so it was a long, uncomfortable and painful time. And when it was over, I sat up and the room went black, so I had to lie there for awhile. My face had gone pale white and my blood pressure dropped, so I guess that had a lot to do with watching.
After all this was over, I had to lie down in another room for 30-45 minutes until my blood pressure was better and the color had returned to my face. I brought my doubles partner to the appointment because they didn't want me to drive back.
Like I said, I proceeded to rest for 2 days, and then I went back to tennis practice. I had a sharp pain for 2 or 3 days which I used ice to help numb. You are not supposed to take motrin or any other anti-inflammatory medications when you have just received a cortisone injection.
My pain has gone now, but I still have a dull ache that I feel now and then. I felt it this morning during a tennis match, but it wasn't unbearable. I'm supposed to tell by now if it has worked, but I'm unsure. I don't feel as much pain, but it's hard to tell. I'm going to need surgery to repair this tear; I'm just trying to see if I can play this season and wait until May to have it. I've played for 3 years on a bad hip, so I don't think 2 more months will do me more harm and my doctor agrees. I'm going back to him soon though to discuss other options.
Someone asked a question about my physical therapy. Once I found out about the tear in my hip, I have stopped going to therapy. I can't balance school and tennis and seeing 3 different doctors. So, I'm focusing on my hip right now, but I still work with my dilators at night.
I think that's all for now. I'm trying to get a hold of my MRI images so I can get some photos up here. I'm really intrigued about how many people with vulvar vestibulitis have hip problems. Everyone I have talked to seems to think my tear and is the reason for all my pain. I hope they are right!
Once I got into the office, there was some paperwork to fill out, and then I had to change in the lovely paper gown. They took me into a room with a couple of screen and an x-ray. There were three people there plus me. First they had me lie down and then talked me through the procedure. What happened is Dr. Cooke marked the spot on my hip he was going to inject. It was very high up, right below where my underwear sits. He then took a very large needle and inserted an anesthetic into the area. I'm not going to lie- this was pretty painful. It takes awhile for the needle to get into the proper location and the anesthetic hurts a lot once it is released.
After that, Dr. Cooke injected dye into the area to make sure he would put the cortisone in the proper place. My big mistake was watching him to do all of this on the screens in the room. I do not recommend watching. He had to inject the dye twice til he got the proper area, and then he injected the cortisone. I guess the worst part of the whole thing was that it took about 15 minutes, so it was a long, uncomfortable and painful time. And when it was over, I sat up and the room went black, so I had to lie there for awhile. My face had gone pale white and my blood pressure dropped, so I guess that had a lot to do with watching.
After all this was over, I had to lie down in another room for 30-45 minutes until my blood pressure was better and the color had returned to my face. I brought my doubles partner to the appointment because they didn't want me to drive back.
Like I said, I proceeded to rest for 2 days, and then I went back to tennis practice. I had a sharp pain for 2 or 3 days which I used ice to help numb. You are not supposed to take motrin or any other anti-inflammatory medications when you have just received a cortisone injection.
My pain has gone now, but I still have a dull ache that I feel now and then. I felt it this morning during a tennis match, but it wasn't unbearable. I'm supposed to tell by now if it has worked, but I'm unsure. I don't feel as much pain, but it's hard to tell. I'm going to need surgery to repair this tear; I'm just trying to see if I can play this season and wait until May to have it. I've played for 3 years on a bad hip, so I don't think 2 more months will do me more harm and my doctor agrees. I'm going back to him soon though to discuss other options.
Someone asked a question about my physical therapy. Once I found out about the tear in my hip, I have stopped going to therapy. I can't balance school and tennis and seeing 3 different doctors. So, I'm focusing on my hip right now, but I still work with my dilators at night.
I think that's all for now. I'm trying to get a hold of my MRI images so I can get some photos up here. I'm really intrigued about how many people with vulvar vestibulitis have hip problems. Everyone I have talked to seems to think my tear and is the reason for all my pain. I hope they are right!
Thursday, February 19, 2009
Big News!
I apologize for the lack of update- but wanted to wait until I had some results back before I spilled all the information. Recently I've been following the lead on my left hip and went to go see Dr. Cooke from the Hospital of Special Surgery about it. He did x-rays and a thorough exam last week and discovered that my pubic bone is eroded in the x-ray, which means the tissue around it might be inflamed. He also thought a had a labial tear in my left hip because of my pain and lack of movement.
So following this lead, I went yesterday into NYC to go get an MRI done at the Hospital for Special Surgery. I must say, although it was an 8 hour ordeal to actually get to the city and back, I was very impressed with the Hospital and everyone working there. My actual MRI took about 2 hours- they did a long series of my left hip and then a series of my pelvis.
Today Dr. Cooke called me to give me the verbal report of the MRI (pictures coming in tomorrow.) I do have chronic inflammation around my pelvic bone because it is eroded, however it's not currently inflamed. But it looks like it has been off and on for a long time. The big news is I do have a huge labial tear in my left hip, which extends anterior to posterior. My veins are also swollen on my left side.
I am probably one of the few people who are ecstatic to find out they have a huge tear in their hip. And my doctors believe that it is the cause of all my pain. So where do we go from here?
First of all, apparently I am still allowed to play tennis. I've been playing for this long on a bad hip, and I wouldn't be causing myself more harm. I am making an appointment to get a cortisone injection next week into the inflamed area of my hip. This might eliminate my pain and my body might repair itself. It's only a 15 minute procedure and I can be active within 2 days.
If that injection doesn't work, it seems like the next step is surgery- an arthroscopy that would repair the tear. This surgery has a recovery time of 6 weeks to 2 months, so I might wait to get it until after the tennis season is over (if I do need it.)
I am going to try and post pictures of my x-rays soon, as well as photos from my MRI if I can get access to them. And of course I will keep you updated about my injection next week. The good news is it can't be worse than the steroid injections I got into my vulva this past summer!
So following this lead, I went yesterday into NYC to go get an MRI done at the Hospital for Special Surgery. I must say, although it was an 8 hour ordeal to actually get to the city and back, I was very impressed with the Hospital and everyone working there. My actual MRI took about 2 hours- they did a long series of my left hip and then a series of my pelvis.
Today Dr. Cooke called me to give me the verbal report of the MRI (pictures coming in tomorrow.) I do have chronic inflammation around my pelvic bone because it is eroded, however it's not currently inflamed. But it looks like it has been off and on for a long time. The big news is I do have a huge labial tear in my left hip, which extends anterior to posterior. My veins are also swollen on my left side.
I am probably one of the few people who are ecstatic to find out they have a huge tear in their hip. And my doctors believe that it is the cause of all my pain. So where do we go from here?
First of all, apparently I am still allowed to play tennis. I've been playing for this long on a bad hip, and I wouldn't be causing myself more harm. I am making an appointment to get a cortisone injection next week into the inflamed area of my hip. This might eliminate my pain and my body might repair itself. It's only a 15 minute procedure and I can be active within 2 days.
If that injection doesn't work, it seems like the next step is surgery- an arthroscopy that would repair the tear. This surgery has a recovery time of 6 weeks to 2 months, so I might wait to get it until after the tennis season is over (if I do need it.)
I am going to try and post pictures of my x-rays soon, as well as photos from my MRI if I can get access to them. And of course I will keep you updated about my injection next week. The good news is it can't be worse than the steroid injections I got into my vulva this past summer!
Sunday, February 1, 2009
New Development
It seems like I have some pretty exciting news to report. However, I'm trying not to have expectations because I have gotten my hopes up so many times before. I went to physical therapy very early Friday morning and we talked about how difficult it has been for me to sit and the general increase in my pain levels. I also have been doing the hip exercises which are simply lifting my left hip in three different positions. Even though it is minimal movement, it hurts a lot, especially when compared to my right hip.
As we were talking, we decided it's time to get x-rays and an MRI of my hip to see if there's any possible problems. Stacey has had four patients with vestibulitis who all either had a tear in their hip muscle or their bone was scraping the nerve. As you can see by this picture, the hip is located right next to your pelvic floor, sit bones, and all the muscles that have been giving me difficulty. For the first time in my life I am hoping there is something wrong with me. If they do find something in my hip, it can be corrected by surgery. All four women who had hip problems do not see Stacey anymore. It took them awhile to get better, but they still got there. It would be so comforting to actually know an end was in sight. I wouldn't mind if someone told me the end was 5 years from now. At least I would know there was going to be an end.
Luckily, I don't have to go all the way to NY for my hip to be looked at. Unfortunately, the doctor can't fit me in until February 26th. I'm going to call every day hoping for a cancellation. Tennis season officially starts February 8th, so I would like some answers before we really get into the swing of things... no pun intended. My best case scenario would be finding something wrong with my hip, but still able to play this season, and worry about surgery the beginning of May. But, of course my health does come first, and if I have to sit out this season, so be it.
Wednesday, January 28, 2009
The good and the bad
A lot has happened since my last post, so forgive me as I just jump right into it.
I think mentally, I've been doing much better recently. Being back at school has a lot to do with it. I seem to do much better when I'm in a constant routine. I know I'll be in the same bed every night, I know what time to go to classes, to tennis, dancing, etc. Even though I'm the busiest I've ever been, it's relaxing to be in a set schedule.
That being said- being at school also brings a new set of challenges. I have two 3-hour classes, which make sitting difficult. This makes me so angry. I shouldn't have to worry about whether or not I can sit through class, I should just have to worry about the actual work I have to do. And this semester since I have 4 history classes, I'm averaging 800-1,000 pages a week. But it's something I enjoy- I just want to be able to concentrate on it.
Usually history class is a great opportunity to learn, think, and debate, and not have to think about my health. You would think vulvar vestibulitis and Women in 20th Century America would have nothing in common. However, last class we began talking about female hysteria, a common medical diagnosis 100 years ago. According to Wikipedia, "Women considered to be suffering from it exhibited a wide array of symptoms including faintness, nervousness, insomnia, fluid retention, heaviness in abdomen, muscle spasm, shortness of breath, irritability, loss of appetite for food or sex, and "a tendency to cause trouble". Obviously this "disease" is ridiculous, but for a long time women believed to be suffering from it would undergo a "pelvic massage or manual stimulation of the anterior wall of the vagina by the doctor until the patient experienced "hysterical paroxysm" (an orgasm.)
At this point everyone in class burst out laughing. Needless to say, I sat there upset and angry that #1- I had to listen to my professor talk about pelvic massage therapy during a history class and #2- everyone thought what I go through every week was so comical. Obviously it's not fair to be mad at the class because they don't know the circumstances, but I still find the whole ordeal ironic.
Everyone keeps asking me if I'm getting better because of physical therapy. I can't tell yet. I think I've been having more problems sitting lately, but I also just got my period and didn't have nearly as much pain the day before as I usually do. I also went and got examined by my specialist and was able to better tolerate the speculum.
There was an email recently sent out about another psychological study being done for vulvar vestibulitis patients. This one dealt with relationships and the difficulties of telling new interests about your condition. I can sympathize with the many women out there who have to go through that. I've been trying to date a lot recently- for many reasons. Sadly, I think one of them is that I miss human contact. Every week I get poked and prodded by my pt, and every night I have to poke and prod myself. My body has just become a giant medical land- it's not mine anymore. As much as dating is exciting and fun- maybe what I really want is someone to take care of me. I try so hard to be strong, but maybe I do want someone to lean on. I know I have my family and my friends for that, but maybe something else is missing. The problem is, I don't think I'm going to get it anytime soon. I don't know too many people who want to take on someone else's troubles, especially when they are extremely intricate. That's why I continue to just detach myself and try to not get involved. There's only so much rejection I can take.
As silly as it sounds, I wanted to thank you for listening. You, you mysterious readers from all over the world. I am not comfortable throwing all this information to just one friend. I don't think it's fair. I know it's a lot, which is why I'm so relieved once I submit this post into the internet abyss. Then I can finally clear my mind and relax.
I think mentally, I've been doing much better recently. Being back at school has a lot to do with it. I seem to do much better when I'm in a constant routine. I know I'll be in the same bed every night, I know what time to go to classes, to tennis, dancing, etc. Even though I'm the busiest I've ever been, it's relaxing to be in a set schedule.
That being said- being at school also brings a new set of challenges. I have two 3-hour classes, which make sitting difficult. This makes me so angry. I shouldn't have to worry about whether or not I can sit through class, I should just have to worry about the actual work I have to do. And this semester since I have 4 history classes, I'm averaging 800-1,000 pages a week. But it's something I enjoy- I just want to be able to concentrate on it.
Usually history class is a great opportunity to learn, think, and debate, and not have to think about my health. You would think vulvar vestibulitis and Women in 20th Century America would have nothing in common. However, last class we began talking about female hysteria, a common medical diagnosis 100 years ago. According to Wikipedia, "Women considered to be suffering from it exhibited a wide array of symptoms including faintness, nervousness, insomnia, fluid retention, heaviness in abdomen, muscle spasm, shortness of breath, irritability, loss of appetite for food or sex, and "a tendency to cause trouble". Obviously this "disease" is ridiculous, but for a long time women believed to be suffering from it would undergo a "pelvic massage or manual stimulation of the anterior wall of the vagina by the doctor until the patient experienced "hysterical paroxysm" (an orgasm.)
At this point everyone in class burst out laughing. Needless to say, I sat there upset and angry that #1- I had to listen to my professor talk about pelvic massage therapy during a history class and #2- everyone thought what I go through every week was so comical. Obviously it's not fair to be mad at the class because they don't know the circumstances, but I still find the whole ordeal ironic.
Everyone keeps asking me if I'm getting better because of physical therapy. I can't tell yet. I think I've been having more problems sitting lately, but I also just got my period and didn't have nearly as much pain the day before as I usually do. I also went and got examined by my specialist and was able to better tolerate the speculum.
There was an email recently sent out about another psychological study being done for vulvar vestibulitis patients. This one dealt with relationships and the difficulties of telling new interests about your condition. I can sympathize with the many women out there who have to go through that. I've been trying to date a lot recently- for many reasons. Sadly, I think one of them is that I miss human contact. Every week I get poked and prodded by my pt, and every night I have to poke and prod myself. My body has just become a giant medical land- it's not mine anymore. As much as dating is exciting and fun- maybe what I really want is someone to take care of me. I try so hard to be strong, but maybe I do want someone to lean on. I know I have my family and my friends for that, but maybe something else is missing. The problem is, I don't think I'm going to get it anytime soon. I don't know too many people who want to take on someone else's troubles, especially when they are extremely intricate. That's why I continue to just detach myself and try to not get involved. There's only so much rejection I can take.
As silly as it sounds, I wanted to thank you for listening. You, you mysterious readers from all over the world. I am not comfortable throwing all this information to just one friend. I don't think it's fair. I know it's a lot, which is why I'm so relieved once I submit this post into the internet abyss. Then I can finally clear my mind and relax.
Wednesday, January 14, 2009
Let's throw in two more doctors
Physical therapy again this morning. I've been feeling better then the past two weeks, but still having random spurts of pain and difficulty sitting.
We tested the strength of my hips today and found out some interesting things. Both my hips are strong from being an athlete, but my left hip is "half a grade" weaker than my right. The difference is very distinguishable. If you remember correctly, I was born with an inverted left femur, which we have always suspected has been part of the problem. So now I'm supposed to go get x-rays and see a hip doctor in Philly. Another doctor to add to the growing list. But I'm really excited to see what we find. Apparently the nerves around my hip might be inflamed which might be contributing to my pain.
Now that tennis is about to start, my PT also wants me to start seeing a deep tissue massage therapist to work on my entire body, but especially releasing my legs and butt. So I have to talk to my trainers at school to find someone locally, because there is no way I'm spending more time traveling far away. Commuting to New York is very hard, and I'm not even back at school yet.
Speaking of commuting, I have to go to see my specialist in Philly for a check up on Thursday and then back to physical therapy in New York on Friday. I'm a little upset my week got taken over by doctor appointments.
Other than that, no real news to report. A quick FYI- I just signed up to post applicable ads on this site in order to raise money for the National Vulvodynia Association. It won't generate a huge amount, but every little bit helps. I think research is so important. It's so frustrating to know exactly where my pain is- the exact muscles... and I still can't do anything about it. I want some real answers.
We tested the strength of my hips today and found out some interesting things. Both my hips are strong from being an athlete, but my left hip is "half a grade" weaker than my right. The difference is very distinguishable. If you remember correctly, I was born with an inverted left femur, which we have always suspected has been part of the problem. So now I'm supposed to go get x-rays and see a hip doctor in Philly. Another doctor to add to the growing list. But I'm really excited to see what we find. Apparently the nerves around my hip might be inflamed which might be contributing to my pain.
Now that tennis is about to start, my PT also wants me to start seeing a deep tissue massage therapist to work on my entire body, but especially releasing my legs and butt. So I have to talk to my trainers at school to find someone locally, because there is no way I'm spending more time traveling far away. Commuting to New York is very hard, and I'm not even back at school yet.
Speaking of commuting, I have to go to see my specialist in Philly for a check up on Thursday and then back to physical therapy in New York on Friday. I'm a little upset my week got taken over by doctor appointments.
Other than that, no real news to report. A quick FYI- I just signed up to post applicable ads on this site in order to raise money for the National Vulvodynia Association. It won't generate a huge amount, but every little bit helps. I think research is so important. It's so frustrating to know exactly where my pain is- the exact muscles... and I still can't do anything about it. I want some real answers.
Tuesday, January 6, 2009
A rough two weeks
These past two weeks have been pretty rough. I've had major problems sitting, and feel a lot of pain in my butt muscles. I've been discovering a lot at physical therapy, so here's some things I've recently learned.
If you look towards the bottom of the image, you'll see a woman's pelvic floor muscles. They are shaped like a bowl and surround several organs. So, the muscles that are causing me pain right around my vagina also wrap around towards my backside. The past two weeks, I've noticed an increase of pain around my butt cheeks, especially where I sit, so we've been doing therapy on those muscles as well. Now, my PT will check my vaginal area, and then have me lie on my stomach and work my butt muscles. Then, she does what she calls "rectal release" where she stretches my muscles internally. It is amazing how tight they are. I still can't release them at all, they are still contracted all the time. I'm hoping once I learn how to let go of them, my pain will improve significantly.
Today's therapy was frustrating because I had retreated a bit. My muscles are still so tight- apparently a penny could bounce off them. I'm also red in the vaginal area and have a discharge. My physical therapist told me to go back to see my specialist in Philly to make sure everything is okay because I might have a yeast infection. Another appointment I have to make.
Commuting to New York is starting to get very difficult. I have to plan so much around it. And I was so frustrated after therapy this morning that I was on the verge of crying in the room. But I don't like people seeing me cry. So I waited until I got home. But right now I'm reading a book called Mountains Beyond Mountains. It's about an American doctor who is devoting his entire life to the people of Haiti to make sure they have proper healthcare. While I was sitting on the bus, reading about these people who have nothing, yet still hold a positive attitude, I couldn't help but change my own attitude. This morning I was so frustrated I was ready to completely break down. But there's no need. There are so many people in the world who are worse off than me, and I need to think about them when I'm upset, instead of those who are better off than me. I'm also lucky enough to have amazing people surrounding me always. They give me strength. If anyone is going through a rough time as well, I've also been listening to this song non-stop. It's beautiful and helps me through.
Orange Sky by Alexi Murdoch
If you look towards the bottom of the image, you'll see a woman's pelvic floor muscles. They are shaped like a bowl and surround several organs. So, the muscles that are causing me pain right around my vagina also wrap around towards my backside. The past two weeks, I've noticed an increase of pain around my butt cheeks, especially where I sit, so we've been doing therapy on those muscles as well. Now, my PT will check my vaginal area, and then have me lie on my stomach and work my butt muscles. Then, she does what she calls "rectal release" where she stretches my muscles internally. It is amazing how tight they are. I still can't release them at all, they are still contracted all the time. I'm hoping once I learn how to let go of them, my pain will improve significantly.
Today's therapy was frustrating because I had retreated a bit. My muscles are still so tight- apparently a penny could bounce off them. I'm also red in the vaginal area and have a discharge. My physical therapist told me to go back to see my specialist in Philly to make sure everything is okay because I might have a yeast infection. Another appointment I have to make.
Commuting to New York is starting to get very difficult. I have to plan so much around it. And I was so frustrated after therapy this morning that I was on the verge of crying in the room. But I don't like people seeing me cry. So I waited until I got home. But right now I'm reading a book called Mountains Beyond Mountains. It's about an American doctor who is devoting his entire life to the people of Haiti to make sure they have proper healthcare. While I was sitting on the bus, reading about these people who have nothing, yet still hold a positive attitude, I couldn't help but change my own attitude. This morning I was so frustrated I was ready to completely break down. But there's no need. There are so many people in the world who are worse off than me, and I need to think about them when I'm upset, instead of those who are better off than me. I'm also lucky enough to have amazing people surrounding me always. They give me strength. If anyone is going through a rough time as well, I've also been listening to this song non-stop. It's beautiful and helps me through.
Orange Sky by Alexi Murdoch
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