Some might deem canceling a highly invasive surgery and deciding to fly out to San Francisco to see a physical therapist recommended by online blog readers quite crazy. However, it turned out to be the best decision I ever made.
I guess it makes sense to start at the beginning. I went to see Elizabeth Rummer at the Pelvic Pain Rehab Center on Friday. I immediately got a good feeling when I walked into the office because they had fancy cushions on their waiting room chairs. Imagine that- providing cushions for patients who have chronic pain problems... (The cushion was fabulous- some sort of gel that is currently unavailable to buy, but Liz said she'd keep me updated as they tried to find a new cushion maker.)
My appointment began with about a half hour of just talking about all my medical history, previous symptoms, basically filling Liz in about the past year and 3 months. Not only that, but she wanted to know other medical history, like the fact that I was born with an inverted hip bone on my left side and I tore my ACL while playing soccer.
After the long talk she began the examination. She did the dreaded Q-tip test, but for once it wasn't an awful experience. She was very slow and gentle and told me that I was sensitive just around 4:00-8:00 (of my vulva.) The next hour she proceeded to do intense therapy on me. She bagan by doing external therapy, stimulating my muscles and connective tissue around the pelvic area. If you imagine the vagina as a triangle, she branched out on all three sides. Massaging isn't the proper word, it was harder than that. Certain parts were pretty painful, but easy to tolerate. What is interesting is that I was in much more pain on the left side than the right. Liz noticed my left side's muscles and tissue were much tighter. This point was further observed upon the inside examination and therapy.
Her theory is that my left hip was never corrected as a child and may have initiated muscle imbalances, which my body compromised for so I could walk, but which has now evolved into pelvic floor dysfunction. The muscle imbalances cause my nerves to be hypo-sensative and since a lot of nervew congregate around the pelvic floor, that's where I'm feeling the effects.
The internal therapy hurt a lot in the beginning, but slowly I began to relax and not feel as much. Liz said she felt my muscles relax and respond to the treatment a few times, which is good news for my first physical therapy.
The entire appointment took over two hours and I learned a lot from Liz. Over 80% of her patients have vulvar vestibulitis, and she had 3 other people fly in this past week from across the country. It was comforting to know I was in the right place. She is referring me to Stacey Futterman at Beyond Basics in New York for therapy once or twice a week. And she also believes that in a year, I will be fully healed. To her, fully healed means no cushion, bike riding, tampon-using, sexually functioning, no pain ever again healed. I can't believe it. I've been so happy, but still a little weary about getting my hopes too high up.
To wrap up this long post, I just want to jot down some other points Liz made before I forget them:
-I've been wearing 100% cotton bikini underwear from VS, but apparently the elastic is too tight for me. I'm going out tomorrow to buy elastic-less underwear that aren't irritating.
-I can continue to be as active as I want, but she recommended that if it wasn't important to me, to not ride a bicycle again. Even after I'm better, the seat is way too small and puts too much pressure on the pelvic area. This I don't care about- it's something very easy to give up.
-She said I would be sore a couple days after therapy, especially externally. (She said it would feel like I had gotten beaten up.) This was definitely true. It's been 2 days since therapy, and I'm still very sore. It seems to be the worst along my two bikini lines and the right below my top underwear line. But I like being sore because I like feeling that progress is being made.
-Physical therapy is not a magic switch that's going to cure VVS one day. Slowly, my symptoms will begin to improve and I will feel a decrease in pain levels. I just need to stay patient.
I'm very tired from traveling all day, so I think that's it for now. If you have any other questions, please feel free to ask. Again, thank you everyone for reading; it is because of you that I decided to fly cross country and finally get some answers and hope. Good night.
Sunday, October 12, 2008
Tuesday, October 7, 2008
Makeover
I was in that cleaning mode today where you just want to start anew and cleanse yourself. I figured a good place to start was here and thought my blog needed a new facelift. Let me know if you like the change or would rather the old. One thing I added were other blogs I've been finding about vulvodynia and vulvar vestibulitis. I'm starting to make a collection of them on the right side and I hope you find them useful as well.
I know there's been some confusion if in fact I am still going to San Francisco. Yesterday I received a phone call telling me Stephanie had a death in the family and had to cancel my appointment with her on Friday. Although my heart goes out to her family, I was obviously very angry and upset all of yesterday. It would cost $300 to get my plane tickets switched to another day if I wanted to reschedule and I had already talked with professors and work and it was just a mess. I was ready to go and it just seems that I get the worst possible luck ever when I've finally made a decisions. To add irony to the situation, Stephanie is flying to New Jersey tomorrow, but obviously she can't practice out of state.
So, now I have decided to still fly out there and now have an appointment on Friday with Elizabeth Rummer, who co-owns the Pelvic Pain Rehab Center with Stephanie. After sending some emails frantically last night (thank you everyone for the quick replies) I heard great things about Elizabeth and have calmed down significantly since yesterday. I will, of course, keep you updated.
I know there's been some confusion if in fact I am still going to San Francisco. Yesterday I received a phone call telling me Stephanie had a death in the family and had to cancel my appointment with her on Friday. Although my heart goes out to her family, I was obviously very angry and upset all of yesterday. It would cost $300 to get my plane tickets switched to another day if I wanted to reschedule and I had already talked with professors and work and it was just a mess. I was ready to go and it just seems that I get the worst possible luck ever when I've finally made a decisions. To add irony to the situation, Stephanie is flying to New Jersey tomorrow, but obviously she can't practice out of state.
So, now I have decided to still fly out there and now have an appointment on Friday with Elizabeth Rummer, who co-owns the Pelvic Pain Rehab Center with Stephanie. After sending some emails frantically last night (thank you everyone for the quick replies) I heard great things about Elizabeth and have calmed down significantly since yesterday. I will, of course, keep you updated.
Thursday, October 2, 2008
Change of Plans
First of all, I wanted to start off by saying I do not want my recent decisions to spark a heated debate. It seems like there are two major sides- pro-surgery and pro-physical therapy and everyone seems to think their side works the best. This is one of the main reasons why I have been so frustrated lately. I don't know what side to take. I shouldn't have to take one; it's a medical condition! The patient shouldn't have to make such major decisions- why can't there be a clear cut path for me to follow? I feel like I'm doing so much research myself. Normally I like to be in complete control and in charge of decisions, but not when it comes to my medical health. I want these decisions to be made for me by people who know what they're talking about. I'm not a health expert! I guess I'm tired of trying to pretend to be one.
I decided on Sunday night to cancel my surgery. I decided this for many reasons. I'd like to thank everyone who's been reading this blog and has emailed me or commented me with their experiences and their advice. I read it all and began to have second doubts about having a vestibulectomy in less than two weeks. I'm not against the idea of surgery at all. I think it has worked very effectively for many many people. However, I don't like the idea of getting surgery while I'm still in school. I'm stressed out enough right now and can't afford to miss classes or recover at home for a few weeks. I also don't like the idea of rushing surgery. I think I just got to frustrated that I was ready for a quick fix, anything to make it better. I don't want to have regrets in the future. I'm still going to try every other option before having surgery. But that's my personal preference. I understand for some people, surgery is a great option that they would rather take advantage of right away.
But I'm very interested in the Pelvic Pain Rehab Center in San Francisco, especially Stephanie Prendergast. You can check them out at pelvicpainrehab.com. I have heard wonderful things about Stephanie and her ability to evaluate her patients and look at their entire body. She also has some experience with athletes and muscoskeletal issues they have that might cause VVS.
I guess you can say I'm taking a leap of faith. I'm so grateful to my parents for not only being behind me on this decision, but being proactive. My dad bought the tickets to San Francisco immediately and is sending my mom with me. I am so blessed to have them in my life. I know how expensive it is to fly to San Francisco, and I am overwhelmed that they will do whatever it takes to get me better. I leave next Thursday morning, for an appointment on Friday. Some people might think I'm crazy and don't see the need to fly all the way out there, but I do. I really believe that she can tell me something different or help me get on the right track. I'm hoping she'll set up a great physical therapy program with people she trusts in the New Jersey/New York area.
I know how frustrating it is to not be able to follow a clear medical road to recovery. We all vear off down different paths and take different routes. However, it's important to keep in mind that we are all working towards the same goal. We just want to get better. It doesn't matter how we get there. Different treatments work for different people. I just want to be able to sit through my classes again. I don't want to be in pain anymore. I don't want to think about it anymore.
I don't expect Stephanie to be a miracle worker and fix me with the snap of her fingers. I know I still have a long way to go and it's not going to be easy. But I have a really good feeling about next Friday and I'm excited to go. And it's also nice to have surgery still in the back of my mind as an option. I have nothing to lose by going to San Francisco and everything to gain. So I'm taking the leap and dreaming big.
I decided on Sunday night to cancel my surgery. I decided this for many reasons. I'd like to thank everyone who's been reading this blog and has emailed me or commented me with their experiences and their advice. I read it all and began to have second doubts about having a vestibulectomy in less than two weeks. I'm not against the idea of surgery at all. I think it has worked very effectively for many many people. However, I don't like the idea of getting surgery while I'm still in school. I'm stressed out enough right now and can't afford to miss classes or recover at home for a few weeks. I also don't like the idea of rushing surgery. I think I just got to frustrated that I was ready for a quick fix, anything to make it better. I don't want to have regrets in the future. I'm still going to try every other option before having surgery. But that's my personal preference. I understand for some people, surgery is a great option that they would rather take advantage of right away.
But I'm very interested in the Pelvic Pain Rehab Center in San Francisco, especially Stephanie Prendergast. You can check them out at pelvicpainrehab.com. I have heard wonderful things about Stephanie and her ability to evaluate her patients and look at their entire body. She also has some experience with athletes and muscoskeletal issues they have that might cause VVS.
I guess you can say I'm taking a leap of faith. I'm so grateful to my parents for not only being behind me on this decision, but being proactive. My dad bought the tickets to San Francisco immediately and is sending my mom with me. I am so blessed to have them in my life. I know how expensive it is to fly to San Francisco, and I am overwhelmed that they will do whatever it takes to get me better. I leave next Thursday morning, for an appointment on Friday. Some people might think I'm crazy and don't see the need to fly all the way out there, but I do. I really believe that she can tell me something different or help me get on the right track. I'm hoping she'll set up a great physical therapy program with people she trusts in the New Jersey/New York area.
I know how frustrating it is to not be able to follow a clear medical road to recovery. We all vear off down different paths and take different routes. However, it's important to keep in mind that we are all working towards the same goal. We just want to get better. It doesn't matter how we get there. Different treatments work for different people. I just want to be able to sit through my classes again. I don't want to be in pain anymore. I don't want to think about it anymore.
I don't expect Stephanie to be a miracle worker and fix me with the snap of her fingers. I know I still have a long way to go and it's not going to be easy. But I have a really good feeling about next Friday and I'm excited to go. And it's also nice to have surgery still in the back of my mind as an option. I have nothing to lose by going to San Francisco and everything to gain. So I'm taking the leap and dreaming big.
Wednesday, September 17, 2008
Slow Dancing in a Burning Room
I've been obsessed with this song by John Mayer for the past few days, and I think that line reflects perfectly how I feel right now.
It was not another Wednesday morning today; I went in expecting to get another round of injections, but my doctor said I wasn't getting better and there was no point at this time. He said if I still wanted to, I could keep going, but if something was going to happen, we'd have seen progress. Not only am I not seeing progress, but I've been feeling worse lately. It might be because I'm about to get my period, but I've been in more pain recently. I can't sit without my cushion for long periods of time. It just hasn't been good. So I took his advice and didn't get the injections. I'm not going to put myself through that for 3 more weeks for no reason and give myself false hope.
Then we talked about our options for a long time in his office. He said we could go back on pain medication to see if that would make me more comfortable. But I had a bad experience with the Elavil. We talked about using new drugs, but again, that would only make me comfortable, and not better. We also talked about physical therapy, and going to see a better one than I did. However, he said my muscle spasms are being caused by the pain I am having and not the other way around. So although it will help me, it also won't solve the underlying problem.
I guess it's hard for me to explain how frustrated I am at this point. I'm so angry inside. I want to just get to the underlying problem and get better. So we started talking again about surgery. He said he greatly recommended it and that I am still an excellent candidate. I only have pain in the lower vestibule area and didn't feel the pain during the inner examination. I said my tennis season ended the first weekend of October and that I was ready to get the surgery right after that. So I just signed the paperwork and I just scheduled it for October 17th, exactly 30 days from today.
At first there were some insurance issues, but my mom called our company and it looks like everything is covered. I just need to go in once before the surgery to for pre-operative care, to talk with my anesthesiologists, get bloodwork, etc.
I know this is the right next step for me, and I hope that my professors understand and work with me through this. It's going to be a tough time, but if I do it now, then I don't have to wait and can do the things I want during the summer. And if I have the chance right now to make this all go away, you can bet I'm going to take it.
I'll discuss the vestibulectomy more in detail in my next post because I have to run around for the rest of the day. I ask for strength to get me through the next couple of months and for people to be understanding. I hate asking for help, but I'm going to need support and people to help me keep my head up when I might not want to.
It was not another Wednesday morning today; I went in expecting to get another round of injections, but my doctor said I wasn't getting better and there was no point at this time. He said if I still wanted to, I could keep going, but if something was going to happen, we'd have seen progress. Not only am I not seeing progress, but I've been feeling worse lately. It might be because I'm about to get my period, but I've been in more pain recently. I can't sit without my cushion for long periods of time. It just hasn't been good. So I took his advice and didn't get the injections. I'm not going to put myself through that for 3 more weeks for no reason and give myself false hope.
Then we talked about our options for a long time in his office. He said we could go back on pain medication to see if that would make me more comfortable. But I had a bad experience with the Elavil. We talked about using new drugs, but again, that would only make me comfortable, and not better. We also talked about physical therapy, and going to see a better one than I did. However, he said my muscle spasms are being caused by the pain I am having and not the other way around. So although it will help me, it also won't solve the underlying problem.
I guess it's hard for me to explain how frustrated I am at this point. I'm so angry inside. I want to just get to the underlying problem and get better. So we started talking again about surgery. He said he greatly recommended it and that I am still an excellent candidate. I only have pain in the lower vestibule area and didn't feel the pain during the inner examination. I said my tennis season ended the first weekend of October and that I was ready to get the surgery right after that. So I just signed the paperwork and I just scheduled it for October 17th, exactly 30 days from today.
At first there were some insurance issues, but my mom called our company and it looks like everything is covered. I just need to go in once before the surgery to for pre-operative care, to talk with my anesthesiologists, get bloodwork, etc.
I know this is the right next step for me, and I hope that my professors understand and work with me through this. It's going to be a tough time, but if I do it now, then I don't have to wait and can do the things I want during the summer. And if I have the chance right now to make this all go away, you can bet I'm going to take it.
I'll discuss the vestibulectomy more in detail in my next post because I have to run around for the rest of the day. I ask for strength to get me through the next couple of months and for people to be understanding. I hate asking for help, but I'm going to need support and people to help me keep my head up when I might not want to.
Wednesday, September 10, 2008
Another Wednesday morning...
Another Wednesday and another round of injections... There isn't too much to say. I went in and was told the area was no longer red. This sounds like great news to me but it's a problem that I'm not seeing any significant change in pain level. My doctor said it is still possible to change suddenly, but I also have a feeling they are trying to give me hope and not consider the next 5 weeks to be worthless. But I don't find them worthless- I might as well try the entire treatment in order to rule it out.
Some positives about today were that I didn't bleed at all and wasn't in too much pain afterwards. I was able to drive directly back to school and play two challenge matches (and win.) So tennis doesn't seem to be making it worse, which is why I've delayed making the decision to quit. Since the fall season is so short, I'd rather make the difficult decision closer towards the big, intense spring season.
I got a list of physical therapists again today. I think after the next 5 weeks, I'm going to try that aspect again because I have gotten so much positive feedback from people, especially commenting here. I'm going to try some of the commented recommendations in NY, as well as someone at UPENN who is supposed to be wonderful. This way I'm still taking a proactive role because I feel once I stop any type of treatment I'm going to get even more depressed.
I got a check in the mail today for $10 for doing a psychological survey for a university in Canada about vulvar vestibulitis and its affects on my self-esteem, sexuality, etc. The study got me thinking a little bit about the psychological affects of VVS. At least in my experience now, it seems that among many other things I have already written about, I have become a bit dispassionate. I'm not entirely sure how to explain it. But hopefully some can relate. I feel like I have this giant safety net with vvs because there are certain things that I can't currently do. And since I know when I'm with someone that we can't possibly have sex, I make decisions I wouldn't normally make without the safety net. I guess it's also my way of trying to "stick it to VVS." If it's going to put me through all these horrible things, at least I get to have a little fun. But I don't like how isolated I've become; I'd like to try and make closer bonds with people and stop shutting myself out so much.
Well it's been a long day and unfortunately it's not over yet. Thanks to all those who read. Lala salama.
Some positives about today were that I didn't bleed at all and wasn't in too much pain afterwards. I was able to drive directly back to school and play two challenge matches (and win.) So tennis doesn't seem to be making it worse, which is why I've delayed making the decision to quit. Since the fall season is so short, I'd rather make the difficult decision closer towards the big, intense spring season.
I got a list of physical therapists again today. I think after the next 5 weeks, I'm going to try that aspect again because I have gotten so much positive feedback from people, especially commenting here. I'm going to try some of the commented recommendations in NY, as well as someone at UPENN who is supposed to be wonderful. This way I'm still taking a proactive role because I feel once I stop any type of treatment I'm going to get even more depressed.
I got a check in the mail today for $10 for doing a psychological survey for a university in Canada about vulvar vestibulitis and its affects on my self-esteem, sexuality, etc. The study got me thinking a little bit about the psychological affects of VVS. At least in my experience now, it seems that among many other things I have already written about, I have become a bit dispassionate. I'm not entirely sure how to explain it. But hopefully some can relate. I feel like I have this giant safety net with vvs because there are certain things that I can't currently do. And since I know when I'm with someone that we can't possibly have sex, I make decisions I wouldn't normally make without the safety net. I guess it's also my way of trying to "stick it to VVS." If it's going to put me through all these horrible things, at least I get to have a little fun. But I don't like how isolated I've become; I'd like to try and make closer bonds with people and stop shutting myself out so much.
Well it's been a long day and unfortunately it's not over yet. Thanks to all those who read. Lala salama.
Wednesday, September 3, 2008
More Injections
I was incorrect in my counting- today was actually the 6th week of injections. I have signed up for 6 more, so I will be going until mid-October. I'm so frustrated right now. The nurse practitioner did my injections this morning because Nyirjesy tends to be very busy. I was a little worried, but she was wonderful and knew what she was doing. Plus it was nice to have a female doctor for once- she seemed to be able to connect better. She also thought about things only females would- like giving me a pad to wear after today's injections so the blood wouldn't get all over.
The injections didn't go too well today- they hurt a lot, especially on the left side. Cynthia told me that the results could change very suddenly, so I'm still hoping for a miracle one of the next 6 weeks. As much as I'm trying to stay positive, I'm pretty depressed today. It's so hard to walk into that hospital week after week, and then come out with nothing good to report.
What frustrates me to no end is that I can't properly explain my feelings to many people. This is not about wanting to have sex again. I would sign sex away for the rest of my life today if it would mean I could be healthy again. I don't care about that. I care about being healthy. I care about not having to worry every day. I care about not having to deal with the sudden stabs of pain when they come. I talked with my parents today and they said maybe I need to seriously consider stopping tennis- maybe it's too much. I would never ever quit tennis, and nothing could make me do so. But now I'm wondering if maybe I need to make the hard decision for myself. Nyirjesy said he's never treated a high-intensity athlete before, and I'm curious to try and find other women athletes with vulvar vestibulitis. I wonder if exercise does put more strain on the area and maybe I am limiting my recovery by continuing to play.
But this also goes back to the post about doing what makes me happy. I don't want to compromise my life because of my health situation- I feel like that would make me even more depressed. I just don't know what the right answer is right now. Either way, I'm going to have to make many difficult choices very soon. I think I'm going to look into the physical therapists posted on the entry below if these injections fail to work.
I was also just emailed about a study being conducted in Pittsburgh on women with vulvar vestibulitis- if you are near to the area, they say it only takes 2 doctor visits. Contact me for more information. I believe I'm a little too far to help, but I'm still going to call them and see what I can do.
The injections didn't go too well today- they hurt a lot, especially on the left side. Cynthia told me that the results could change very suddenly, so I'm still hoping for a miracle one of the next 6 weeks. As much as I'm trying to stay positive, I'm pretty depressed today. It's so hard to walk into that hospital week after week, and then come out with nothing good to report.
What frustrates me to no end is that I can't properly explain my feelings to many people. This is not about wanting to have sex again. I would sign sex away for the rest of my life today if it would mean I could be healthy again. I don't care about that. I care about being healthy. I care about not having to worry every day. I care about not having to deal with the sudden stabs of pain when they come. I talked with my parents today and they said maybe I need to seriously consider stopping tennis- maybe it's too much. I would never ever quit tennis, and nothing could make me do so. But now I'm wondering if maybe I need to make the hard decision for myself. Nyirjesy said he's never treated a high-intensity athlete before, and I'm curious to try and find other women athletes with vulvar vestibulitis. I wonder if exercise does put more strain on the area and maybe I am limiting my recovery by continuing to play.
But this also goes back to the post about doing what makes me happy. I don't want to compromise my life because of my health situation- I feel like that would make me even more depressed. I just don't know what the right answer is right now. Either way, I'm going to have to make many difficult choices very soon. I think I'm going to look into the physical therapists posted on the entry below if these injections fail to work.
I was also just emailed about a study being conducted in Pittsburgh on women with vulvar vestibulitis- if you are near to the area, they say it only takes 2 doctor visits. Contact me for more information. I believe I'm a little too far to help, but I'm still going to call them and see what I can do.
Monday, August 25, 2008
Mixed Feelings
I've been thinking all day what to make of today's injections. I'm not even sure what to write. Maybe someone can help me figure it out. I thought today was a pretty pivotal appointment- it was my sixth injection and if I wasn't getting any better it would be my last, leaving surgery as my last option. If I was getting better, I'd set up 6 more weeks of 12 injections. I think that if I'm not better by those 6 weeks, I stop because my doctor gave me the impression this treatment only lasts 12 weeks.
I guess I'm upset because I didn't get that surge of hope I was hoping desperately for. I went through the same motions today and got the two needles. The right side didn't hurt as much, but the left side hurt a lot more. The exam itself felt to be about the same to me, possibly a little better. But it was still unbearable. I didn't bleed as much this time after the injections, which was a positive note. Also, my doctor said that the redness around the vulva was very minimal now, which is a great improvement. I just don't understand why I'm not feeling better pain-wise. I'm still hanging on to the hope that it'll come in time.
My doctor and I decided to go for 6 more weeks. He felt that if it was feeling a little bit better, it was worth trying. I asked him if I should be feeling a considerable amount better, and he said most are 100% by the 6th injection, which I am clearly not. I asked if it was worth it, and he seems to think so. I guess I don't have another choice and I might as well keep trying it. At this point, it's easy to separate myself from the pain- it's becoming second nature and part of my routine. "What are you doing today Tamra?" "Nothing much, just playing tennis, grabbing breakfast, and getting needle injections in my vagina."
All humor aside, I'm so glad that I'm going again for 6 more weeks. It gives me 6 more weeks of hope. I honestly don't want to stop them, because then there is nothing I can possibly do until I have time to do the surgery- which at the earliest wouldn't happen until the summer. As crazy as it sounds, I would choose to go in every week from now until the end of the school year, just so I feel like I'm doing something. I'm so scared to be without treatment; I don't want to feel helpless. I'm a very proactive person, and I constantly need to be moving and doing things. The last thing I need is to just "deal with it" for the rest of the school year.
So I really don't know how to feel right now. I certainly don't want to scream cries of joy from the rooftop, but I'm not depressed either. I'm bummed I didn't get what I wanted today. I still don't know if they'll work or what will happen, and I'm just entering the cycle yet again. But on the other hand, I'm happy I'm still doing something and still have hope to hold on to.
It's been over a year now since I first starting having pain- I've forgotten what it feels like to live without it. I'm in the process of reevaluating how I've handled everything. One thing I'd like to change is the way I feel about myself. I still haven't felt good about myself in a long time. It's so frustrating and difficult and impossible to explain to anyone who isn't going through it. I don't feel hot, I don't feel like a sexual being, I don't feel wanted, I don't feel like I have anything to offer... it's many things. I am glad that I'm single, because then I don't feel added pressure to get better and feel guilty all the time. Hopefully others can vent about it too so I don't feel like an idiot.
Right now I'm just keeping busy and chugging forward. It's the only way I know. Until next week.
I guess I'm upset because I didn't get that surge of hope I was hoping desperately for. I went through the same motions today and got the two needles. The right side didn't hurt as much, but the left side hurt a lot more. The exam itself felt to be about the same to me, possibly a little better. But it was still unbearable. I didn't bleed as much this time after the injections, which was a positive note. Also, my doctor said that the redness around the vulva was very minimal now, which is a great improvement. I just don't understand why I'm not feeling better pain-wise. I'm still hanging on to the hope that it'll come in time.
My doctor and I decided to go for 6 more weeks. He felt that if it was feeling a little bit better, it was worth trying. I asked him if I should be feeling a considerable amount better, and he said most are 100% by the 6th injection, which I am clearly not. I asked if it was worth it, and he seems to think so. I guess I don't have another choice and I might as well keep trying it. At this point, it's easy to separate myself from the pain- it's becoming second nature and part of my routine. "What are you doing today Tamra?" "Nothing much, just playing tennis, grabbing breakfast, and getting needle injections in my vagina."
All humor aside, I'm so glad that I'm going again for 6 more weeks. It gives me 6 more weeks of hope. I honestly don't want to stop them, because then there is nothing I can possibly do until I have time to do the surgery- which at the earliest wouldn't happen until the summer. As crazy as it sounds, I would choose to go in every week from now until the end of the school year, just so I feel like I'm doing something. I'm so scared to be without treatment; I don't want to feel helpless. I'm a very proactive person, and I constantly need to be moving and doing things. The last thing I need is to just "deal with it" for the rest of the school year.
So I really don't know how to feel right now. I certainly don't want to scream cries of joy from the rooftop, but I'm not depressed either. I'm bummed I didn't get what I wanted today. I still don't know if they'll work or what will happen, and I'm just entering the cycle yet again. But on the other hand, I'm happy I'm still doing something and still have hope to hold on to.
It's been over a year now since I first starting having pain- I've forgotten what it feels like to live without it. I'm in the process of reevaluating how I've handled everything. One thing I'd like to change is the way I feel about myself. I still haven't felt good about myself in a long time. It's so frustrating and difficult and impossible to explain to anyone who isn't going through it. I don't feel hot, I don't feel like a sexual being, I don't feel wanted, I don't feel like I have anything to offer... it's many things. I am glad that I'm single, because then I don't feel added pressure to get better and feel guilty all the time. Hopefully others can vent about it too so I don't feel like an idiot.
Right now I'm just keeping busy and chugging forward. It's the only way I know. Until next week.
Friday, August 15, 2008
Good News!
I can barely contain my excitement as I type. Finally I have good news to report!
Yesterday was my 5th steroid injection. As I said before, I've been getting two needles on either side of the vulva once every week. I go in 6 times, and if we see improvement, then I go in for 6 more weeks and hopefully by then I will be healthy.
I walked in at 8 AM sharp and went through the standard procedure. However, during the exam, Dr. Nyirjesy told me I was less red in the area and it had improved. The exam also didn't hurt nearly as much as it usually does. Then, I barely felt the right needle at all. (The left needle I did feel a lot, but that's because it also hit a small blood vessel.) After the injections, I had to wait a little bit longer with gauze between my legs to stop the bleeding and then Nyirjesy came back in to talk to me. He was very pleased with the exam and thought I was improving. I nearly broke down in the office. Is it possible that after all this, that in 7 weeks I could possibly be all better?
I practically skipped down the streets of Philadelphia saying good morning to everyone I met. Some of them must have thought I was crazy, but I didn't care. I finally had good news, I finally had hope to grab on to. I'm trying hard not to get my hopes up until my next appointment. If I've improved even more by the next appointment, then I will be going back for 6 more weeks. Could this be the beginning of the end? I pray and I hope it is. But keep your fingers crossed for me just in case ;-)
Yesterday was my 5th steroid injection. As I said before, I've been getting two needles on either side of the vulva once every week. I go in 6 times, and if we see improvement, then I go in for 6 more weeks and hopefully by then I will be healthy.
I walked in at 8 AM sharp and went through the standard procedure. However, during the exam, Dr. Nyirjesy told me I was less red in the area and it had improved. The exam also didn't hurt nearly as much as it usually does. Then, I barely felt the right needle at all. (The left needle I did feel a lot, but that's because it also hit a small blood vessel.) After the injections, I had to wait a little bit longer with gauze between my legs to stop the bleeding and then Nyirjesy came back in to talk to me. He was very pleased with the exam and thought I was improving. I nearly broke down in the office. Is it possible that after all this, that in 7 weeks I could possibly be all better?
I practically skipped down the streets of Philadelphia saying good morning to everyone I met. Some of them must have thought I was crazy, but I didn't care. I finally had good news, I finally had hope to grab on to. I'm trying hard not to get my hopes up until my next appointment. If I've improved even more by the next appointment, then I will be going back for 6 more weeks. Could this be the beginning of the end? I pray and I hope it is. But keep your fingers crossed for me just in case ;-)
Friday, August 8, 2008
3rd Injection
I am amazed and overwhelmed by the kindness of people. Today I went in for my third steroid injection. Needless to say, I wasn't thrilled. I told my doctor about the bleeding and pain from the last injection. He said the bleeding can happen at times and to just place a cool cloth in between my knees and close them. He also said the pain levels can alter from shot to shot. As long as I wasn't generally worse, it is still too soon to tell.
We went ahead with the two needles. I had a new audience today- another graduate student. I always wonder what's on their minds when they see me. Like I said previously, I don't care how many people are in the room anymore- I've been put in the limelight so much that it doesn't matter. And, if this helps someone learn more about vulvar vestibulitis, then more people can be treated properly and maybe a cure can finally be found.
I was still in a little bit of pain from the last injection, so this week's wasn't particularly fun. I just closed my eyes and clenched my hands together trying to focus on breathing and my knees. Right in the middle of the first needle, the nurse came right up to me and grabbed my hand and told me to squeeze as tight as I could. She had talked to me in the room during the beginning of the exam and was actually interested in my life. She said she was so proud of me for climbing Kilimanjaro. She actually treated me like a human being. Then, her simple act of coming over to help me through just gave me tremendous strength. I thank her dearly for her kindness.
I waited longer than usual in the room to make sure I didn't bleed after I left the hospital. Then I slowly walked back and took the train home. I was in a lot of pain for about an hour after the needles. It was a stabbing and sometimes burning pain that came in waves. I found it was better to just lie down and take the hits as they came. When they were over, I was just in a state of soreness. I definitely needed my cushion to sit down or I just tried to avoid sitting altogether.
Next week I should start to see if these are even working. As crazy as it sounds, I'd rather just keep continuing with the shots each week- they make me feel like I'm doing something and gives me a schedule to follow. If I'm told next week that they aren't working, then I'll be lost. I'll only have one option left.
But right now I'm just going to keep on moving. My tennis season is coming up and I want to start training for mountain climbing. My goal is to summit the 7 peaks- the 7 tallest points on ever continent. I already have one down. The next would would be Elbrus in Moscow. I think mountain climbing will give me something else to focus on and prove to myself I'm healthy and not limited in what I can accomplish.
We went ahead with the two needles. I had a new audience today- another graduate student. I always wonder what's on their minds when they see me. Like I said previously, I don't care how many people are in the room anymore- I've been put in the limelight so much that it doesn't matter. And, if this helps someone learn more about vulvar vestibulitis, then more people can be treated properly and maybe a cure can finally be found.
I was still in a little bit of pain from the last injection, so this week's wasn't particularly fun. I just closed my eyes and clenched my hands together trying to focus on breathing and my knees. Right in the middle of the first needle, the nurse came right up to me and grabbed my hand and told me to squeeze as tight as I could. She had talked to me in the room during the beginning of the exam and was actually interested in my life. She said she was so proud of me for climbing Kilimanjaro. She actually treated me like a human being. Then, her simple act of coming over to help me through just gave me tremendous strength. I thank her dearly for her kindness.
I waited longer than usual in the room to make sure I didn't bleed after I left the hospital. Then I slowly walked back and took the train home. I was in a lot of pain for about an hour after the needles. It was a stabbing and sometimes burning pain that came in waves. I found it was better to just lie down and take the hits as they came. When they were over, I was just in a state of soreness. I definitely needed my cushion to sit down or I just tried to avoid sitting altogether.
Next week I should start to see if these are even working. As crazy as it sounds, I'd rather just keep continuing with the shots each week- they make me feel like I'm doing something and gives me a schedule to follow. If I'm told next week that they aren't working, then I'll be lost. I'll only have one option left.
But right now I'm just going to keep on moving. My tennis season is coming up and I want to start training for mountain climbing. My goal is to summit the 7 peaks- the 7 tallest points on ever continent. I already have one down. The next would would be Elbrus in Moscow. I think mountain climbing will give me something else to focus on and prove to myself I'm healthy and not limited in what I can accomplish.
Sunday, August 3, 2008
Steroid Injections
I apologize for not updating sooner- life has been crazy these days.
My first steroid injection was Wednesday, July 25th at the lovely hour of 8 AM. The injections are so early because I can be the first appointment of the day and not have to sit in the waiting room and waste my entire day. Luckily for me, I was able to dance Tuesday night in Philly and then stay with a friend who lives in Center City. It was so nice to walk to the hospital and not have to commute in the morning. I was obviously very nervous for my first injections. My parents were worried as well and had offered to get a hotel and spend the night with me and then all go in together in the morning. I told them although it would be nice to have someone with me- it's going to be awful no matter what. I'd rather them save their money and take me out somewhere after my injections.
I walked in alone Wednesday morning, but in a good mindset. I had just spent the previous night doing something I absolutely love. I definitely recommend spending the night before injections doing a fun activity and not staying home and thinking about what's to come. The busier I am and the more distractions I have leaves me less time to think about what's actually happening. Because let's face it- I have to get at least 12 needles into my vulva without numbing medication. And this is my last option before surgery. This is why I can't think about it too much.
Once I got called into the exam room, Dr. Nyirjesy, a nurse, and the nurse practitioner came in. He told me to concentrate on keeping my knees relaxed and spread wide apart. (I almost laughed at this. There was certainly no way I was going to convince my knees to relax.) It happened rather quickly- he told me to expect the needle, and then it went in. The worst parts of the pain are when the needle is going in and being removed. But I just closed my eyes, squeezed my fingers, and told myself it would be over soon. The pain level was very bad- it takes a lot for me to not fly off the table, but since it only lasted 10 seconds, it was bearable. He asked me if I wanted a break and I just said do the next one quickly. I don't recommend taking a break- you might as well just get it all over with. In about 25 seconds, the injections are done and you can breathe again. I was very happy with the first round of injections- I didn't feel that much pain afterwards, just a very heavy feeling. I had to sit in the exam room for about 20 minutes with gauze inbetween my legs to soak up some of the drops of blood, and then I was free to leave. First round done. I was feeling good, and was no longer scared.
My second round of injections were last Wednesday, the 2nd. Again, I was able to go dancing Tuesday night and stay with friends in the city, putting me in a great mood and making my commute easy. It's important not to be stressed going into these appointments. The same routine occured again. This time we had a grad student join us in the room. Sometimes it gets to be quite the party because everyone wants to see the injections. Many would probably be uncomfortable being on display, but at this point, I really couldn't care less who sees my vagina. Look all you want, just figure out a way to fix it. I went through another 25 seconds of extreme pain, but it was so short that it was easy to get through. Then I sat with the gauze for another 20 minutes waiting. I noticed a lot more pain after the injections this time. Dr. Nyirjsey always uses his fingers to check pain levels of certain areas after giving me the steroids to check if he put them in the correct place. These past two times it hasn't hurt when he touched the inside walls of my vagina, but the insertion hurt a lot. After my appointment, I was a little uncomfortable walking and sitting the rest of the day. I used my cushion, but noticed a pain on both sides of the vulva. For the past couple of days that pain has been coming and going. I'm going to ask about it at my next appointment. I'm hoping it's a "gets worse before gets better" thing, but I hope it's not a negative effect of the injections. Right now I'm just trying to avoid sitting down for long periods of time.
I'm visiting my best friend in Chicago for the week, so my next injection won't be until Friday morning. I'm hoping for the best. Apparently we start to see if they are working by the fourth week, which is getting closer and closer. Right now I really don't want to analyze what's happening; I'd just rather not think deeply about it now. I'm trying to focus on other aspects of my life, which I'm finding is calming me down and putting me in a good mindset during these appointments.
My first steroid injection was Wednesday, July 25th at the lovely hour of 8 AM. The injections are so early because I can be the first appointment of the day and not have to sit in the waiting room and waste my entire day. Luckily for me, I was able to dance Tuesday night in Philly and then stay with a friend who lives in Center City. It was so nice to walk to the hospital and not have to commute in the morning. I was obviously very nervous for my first injections. My parents were worried as well and had offered to get a hotel and spend the night with me and then all go in together in the morning. I told them although it would be nice to have someone with me- it's going to be awful no matter what. I'd rather them save their money and take me out somewhere after my injections.
I walked in alone Wednesday morning, but in a good mindset. I had just spent the previous night doing something I absolutely love. I definitely recommend spending the night before injections doing a fun activity and not staying home and thinking about what's to come. The busier I am and the more distractions I have leaves me less time to think about what's actually happening. Because let's face it- I have to get at least 12 needles into my vulva without numbing medication. And this is my last option before surgery. This is why I can't think about it too much.
Once I got called into the exam room, Dr. Nyirjesy, a nurse, and the nurse practitioner came in. He told me to concentrate on keeping my knees relaxed and spread wide apart. (I almost laughed at this. There was certainly no way I was going to convince my knees to relax.) It happened rather quickly- he told me to expect the needle, and then it went in. The worst parts of the pain are when the needle is going in and being removed. But I just closed my eyes, squeezed my fingers, and told myself it would be over soon. The pain level was very bad- it takes a lot for me to not fly off the table, but since it only lasted 10 seconds, it was bearable. He asked me if I wanted a break and I just said do the next one quickly. I don't recommend taking a break- you might as well just get it all over with. In about 25 seconds, the injections are done and you can breathe again. I was very happy with the first round of injections- I didn't feel that much pain afterwards, just a very heavy feeling. I had to sit in the exam room for about 20 minutes with gauze inbetween my legs to soak up some of the drops of blood, and then I was free to leave. First round done. I was feeling good, and was no longer scared.
My second round of injections were last Wednesday, the 2nd. Again, I was able to go dancing Tuesday night and stay with friends in the city, putting me in a great mood and making my commute easy. It's important not to be stressed going into these appointments. The same routine occured again. This time we had a grad student join us in the room. Sometimes it gets to be quite the party because everyone wants to see the injections. Many would probably be uncomfortable being on display, but at this point, I really couldn't care less who sees my vagina. Look all you want, just figure out a way to fix it. I went through another 25 seconds of extreme pain, but it was so short that it was easy to get through. Then I sat with the gauze for another 20 minutes waiting. I noticed a lot more pain after the injections this time. Dr. Nyirjsey always uses his fingers to check pain levels of certain areas after giving me the steroids to check if he put them in the correct place. These past two times it hasn't hurt when he touched the inside walls of my vagina, but the insertion hurt a lot. After my appointment, I was a little uncomfortable walking and sitting the rest of the day. I used my cushion, but noticed a pain on both sides of the vulva. For the past couple of days that pain has been coming and going. I'm going to ask about it at my next appointment. I'm hoping it's a "gets worse before gets better" thing, but I hope it's not a negative effect of the injections. Right now I'm just trying to avoid sitting down for long periods of time.
I'm visiting my best friend in Chicago for the week, so my next injection won't be until Friday morning. I'm hoping for the best. Apparently we start to see if they are working by the fourth week, which is getting closer and closer. Right now I really don't want to analyze what's happening; I'd just rather not think deeply about it now. I'm trying to focus on other aspects of my life, which I'm finding is calming me down and putting me in a good mindset during these appointments.
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