New York 2

Despite my lack of a creative title, Wednesday was my second physical therapy session in NYC. A couple things I want to point out (in list form):

-This time I really worked on being less stressed by getting plenty of sleep, listening to good music while I got ready, and giving myself ample time to get to the train station. It was a much better experience and I think relaxing is more effective than some think.

-We did the same therapy, but surprisingly, I was in more pain on my right side this time. Stacey thinks it's because she spent so much time on my left side last visit. So now we're trying to accommodate both sides.

-The worst place for me seems to be the tissue right underneath my leg. I don't have a good medical explanation, but I would describe it as the part of the butt cheek that connects closest to the vagina. That's always the part where I am most sore and where I begin to tear during therapy.

-We spent more time working on breathing. A good exercise is to lie flat on your bed. Take a deep breath in, and then as you exhale, tighten up your pelvic muscles. Release them as you breath in again. This is the opposite of what we normally do, so at first it's like patting your stomach and rubbing your head. But your pelvic floor does naturally release when you inhale, which is pretty interesting.

-I was given exercises to do after this session, which I am going to continue to refer to as my "vagina homework." I now have an extra small dilator that is a weird hybrid between a candlestick and tampon. I have given it two sweet names to try and lighten the situation- Everest and Excalibur. I feel like a human name would be weird; at least I can get in the mindset of overcoming these two inanimate things. I have to use insert Everest once a day and lie on my back for 20-30 minutes. The point is to try and get my muscles to relax because they are tightening up now even before something comes close to touching them. I see it as the same idea as being ticklish. You don't even have to tickle the person for them to squirm.

-The only thing that really makes me bitter is the lubricant I had to buy from the physical therapy office. It's so cleverly called "Slippery Stuff"- bonus points to whatever genius came up with that name. On the very front of the tube, it says "Heightens the pleasure of loving intimacy. Silky, safe, and long-lasting." Then on the back is says, "Slippery Stuff enhances the pleasure of human contact." I have used it three times now and I think I'm going to complain and send it back because I certainly haven't experienced any pleasure with it. It must be a faulty tube.

-I was in a private blues lesson on Thursday and found out my pelvic muscles and frame naturally sink back (most women tend to lean forwards.) This has caused me to by hyper-sensitive in my lower back. There's a couple of yoga positions I can do to work on relaxing my lower back. It seems like dancing can also work as physical therapy. In that case, I'm going to work on calling my insurance company and having them cover private lessons and dance exchanges.

Physical Therapy in New York

Yesterday was my first physical therapy appointment with Stacey Futterman in NYC. I came out torn between emotions, which always seems to be the case.

My first mistake was creating a stressful day. I was rushing to catch my train, rushing to walk to my appointment, and rushing back to catch an early train. I also had a lot of work due that I was constantly thinking about. After speaking with Stacey, I realize even more the importance of avoiding stress any way I can. It seems that my pain gets worse with stress and creates another obstacle I have to work through. I'm going to try my best from now on to give myself plenty of time to get to the train, get my work done in advance, and give myself time after my appointment to come back and lie down. This is easier said then done when you're an active college student.

I got a good feeling right away from Stacey. I didn't feel bitter towards her like my gynecologist, (probably because I knew she was an expert in the field.) She was friendly, but not overly friendly, open, and most importantly made me feel comfortable. She very obviously knew what she was doing and earned my trust quickly, which is not easy to do.

We had to do an initial evaluation even though I had done one in San Francisco. At this point I'm pretty good at repeating the entire story in under 5 minutes. After that, she left the room and I was told to undress from the waist down. Now, I've been told this many times, and each time I'm always confused with what to do with my shoes. If I had sneakers on, I would take them off and just wear my socks. But I wore cute ruby flats to therapy and didn't want to have my bare feet out. One, I'm sure they would smell pretty bad and two, I felt I could play a trick with them on. Almost like if you glanced me over quickly you'd see my shirt and shoes and just assume I was wearing pants. Don't ask me why I became so self-conscious over my feet. I'm curious to know what Stacey thought when she came back in and saw me lying on the table, wearing my red flats...

She did a therapy session that was very similar to Liz's in San Francisco. We began with working the connective tissue above the vagina and in both my legs. Again, the left side is significantly worse than the right. The difference in pain level is very noticeable- I was having a hard time dealing with the pain on the left, but the right was a little more bearable. I almost miss the days of a ten second steroid injection. Dealing with therapy for an hour is extremely difficult for me. This is why I think it's so important for me to destress as much as possible before I get there.

Stacey ended with an internal exam and internal therapy. This was the worst part, pain-wise. She taught me a breathing exercise and a better way to sit as well, which I will go into more detail next time. She also recommended I go back on the Estrace cream. I had been applying it twice a day, but stopped when I left for Tanzania and haven't gone back on it because I wanted to see what treatments were working. So, I'm going to make an appointment back in Philly to get another presciption. Stacey also recommended getting an MRI of my left hip in the future.

After the hour, I made appointments once a week until my break, when I need to come in twice a week. Stacey said I have a lot of work to do and she would like me in twice a week when I can. She didn't tell me the time frame we're working with because everyone heals differently. Howeer, she did say generally, a year is the most it would take. I'm crossing my fingers.

It's nice to be back in a routine again. I have that same satisfaction that I am actively doing something to get better, which is a great feeling. And I'm very confident that this treatment is going to work. Everytime I notice the significant pain on my left side, I really believe this is a tissue, muscle, and nerve problem. I wish I didn't have to treck to the city once or twice a week, but I'll do whatever it takes. I'm very sore today after the therapy yesterday, and it's a little frustrating to deal with. It's very hard to sit today, so I try to stand as much as possible and leave classes to go to the bathroom whenever I can. It's just a very long and daunting road ahead, but I'm going to push through the pain and work as hard as I can to be pain free by Thanksgiving of next year. I can do it.

Bitter at the Gynecologist

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.

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.

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.

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.

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.

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.

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.

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.