Today I had to go for my annual gynecologist appointment back home. I apologize for the long rant, but I'm sure many of you will feel my frustration. I think what scares me the most is how bitter I've become. A year ago, I loved my gynecologist. She's a great person- helpful, intelligent.. etc. But I was so frustrated that I had to go to this appointment when I've been going almost once a week in three different states to see people for the past year. My specialist wanted me to still go to this appointment to keep a special relationship with my gynecologist. Why I can understand the importance, my main concern is getting better first.
The assistants and doctors were so nice to me, but I kept giving them the cold shoulder. If they knew what I've been dealing with every day for over a year now, I don't think they'd be so smiley and try to joke with me. When my gynecologist came in, she asked me how I was doing. I said I've been better and proceeded to try my best to catch her up on my entire year in about 5 minutes. I didn't feel like talking about it in detail to her. Then she gave me a smile and said besides all that, how are you? Besides all of that?? That is my life right now! I can't just seperate it and put it to the side and look at everything else. It has affected everything for the past year.
Trying to keep my composure, I calmly asked for the child-sized speculum, but it still hurt like hell going in. She kept making comments about how amazing it is that it hurts so much and how much worse it is from last year. Yes, thank you very much. I'm well aware of all of this. Then after talking with me and examining me, she asks if I want to get tested for chlamydia and some other STD's. I'm sorry, but HELLO?? If I can't even handle a q-tip right now, do you honestly think I need to get tested for sexually transmitted diseases? First strike. Then she asked me how often my boyfriend and I were having sex. Two more strikes. When I told her that relationship was over, she looked at me like I was some poor abandoned puppy dog. I really don't need you to feel sorry for me. I just want to get out as quickly as possible.
After all of this, she still wanted to talk about vulvar vestibulitis, clearly not understanding that I did not. I have to talk about it to other doctors constantly and don't see why she needs anything other than the information I gave her. What I disliked the most was she tried to educate me about VVS and topics like surgery and physical therapy. First of all, she mispronounced so many words and clearly did not know anything other than the basic information. I don't like when people try to teach me something they don't know, especially when I've become almost an expert on the subject. Please just do my pap smear and let me go on my way and be in peace. I don't want to spend forever in your office. I swear my vagina has a mind of its own and my pain levels go up once I set foot in a doctor's office, because it knows what it's going to have to go through.
My gynecologist gave me this big smile when I walked out, which I just couldn't return. I really hope she understands why I don't feel like smiling and have turned into this Scrooge of the gynecologist office. While walking out, I saw two pairs of mothers and young daughters sitting in the waiting room. The daughters had their hands crossed over their body and looked irritated, like they couldn't believe they had to be here with their mothers. I wanted to run in front of them and jump up and down screaming- STOP LOOKING LIKE THIS IS TORTURE, BECAUSE IT ISN'T! TRUST ME- THERE ARE SO MANY WORSE THINGS THAT COULD BE WRONG WITH YOU NOW. Cherish these easy gynecologist visits. I would do anything to go back to them. That's probably why I got so upset- I want back to the place where it all began. The last time I was here, I was just starting to get sick. It kills me that I used to be those normal girls sitting on the couch, who went in and out for their appointment. Now I'm cushion girl- who can't check "No" to all the questions they give you before your visit, who gets all the questions, who's so different from everyone else. I hate it.
So, I've become bitter. Not all the time. I've been quite happy recently and doing fun things and planning great things for this summer. But, I've become pretty bitter about being sick. And I seem to be taking it out on many people at very random times. So, I apologize, especially to all my family and friends who have had to put up with me for over a year now. I love you all more than you can imagine and would be lost without you.
Thursday, October 30, 2008
Friday, October 24, 2008
Waiting Patiently
I still have to wait two weeks before my first appointment at Beyond Basics physical therapy in NY. Traveling to the city is going to be a pain to do, but worth it in the end. I was doing some searching and wondering if anyone has ever used these:
http://www.vulvodynia-treatment.com/Commandos.html
It seemed like a possibly good idea- but I also don't know how legitimate the webpage was.
http://www.vulvodynia-treatment.com/Commandos.html
It seemed like a possibly good idea- but I also don't know how legitimate the webpage was.
Sunday, October 12, 2008
I left my doubts in San Francisco
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.
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.
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.
Subscribe to:
Posts (Atom)