A New Mountain

I had serious doubts today about climbing the seven summits. I don't know why the thought originally crossed my mind. I do love adventure and the idea does appeal to me- but it's a significant time and financial responsibility that I would be shouldering for the next ten years. Not to mention it's dangerous. I think climbing Kilimanjaro gave me a taste of what being invincible feels like. I loved standing on top, feeling like I could do anything. I want to feel invincible all the time because I want to feel like I can conquer my health. But now I'm afraid that I'm doing all of this to run away. If I keep busy and if I'm always planning something in the future, I'll never have to think in the present and face my current situation and the fact that I am afraid. I'm scared, I'm scared, I'm scared. I don't want to pretend to be strong anymore and I think climbing the 7 summits was my way of showing people how strong I was and that I was fine. I don't want to keep running away. How am I going to get better if I do? Doesn't everyone say you need to stand up and look fear in the face? I think I need to stop living in the future and come to truly accept my present. Shoving it aside hasn't helped.

So now I don't know what to do. I went to go talk to someone a couple days ago and they've really helped me think and shown me the power of mind over matter. I know that I'm so worried about all the strain and hardship I've put on other people. I can't stand to see them upset over me. I want to get better so badly so they can stop worrying about me. I am tired of being the person who needs help. I have always been the supportive person, and love giving people a hand when they are down. I don't want to be on the ground anymore.

So I don't know what the right thing to do is. The person I spoke with told me the power of saying no, even if it's to your best friends and even if it's to yourself. That's something I really need to work on. I really do need to learn how to relax and stop running around like crazy. I need to slow down, even if being busy is all I know how to do. I also need to know how to say no to myself. I've been so scared to say no about my summer and my goals, but maybe it's time to step back and just relax. I think I've made great progress already (my last physical therapy appointment went much better then last time) and I really am excited to see how the next months pan out. But there's so much work to be done. I think that's the real mountain I need to overcome and the real one I should be focusing on right now. My dad suggested a couple of days ago to perhaps stay and relax this summer. And I think it's time I finally listen to him. I don't know what I'd do without him and my mom and my entire family. I am so blessed to have them in my life, supporting me every step of the way. All I want to do is to be better so they don't have to worry about me anymore.

I know that this was a little over the place, but letting it out feels so good, so I can't help but post. I think I've had this horrible feeling in my stomach and now I feel like a big weight has been removed from it. There. It's out.

Bump in the road

The past couple of days haven't been too great. I guess it started Saturday when I noticed a little blood after I did my physical therapy exercises. It was nothing drastic, but the past few days I've also experienced heightened pain levels and can't put the dilators in. I went to physical therapy today and apparently there's many possible reason why I've backtracked.

The blood is one of two things- I either have a small tear or I inserted the dilator a little too far, which instigated that reaction. But, it's not a big deal and happens to a lot of women.

The elevated pain levels could be due to:
-stress (finals week)
-working out (have been going to the gym every day to get back in shape for tennis/climbing)
-Estrace (just started it 2 weeks ago)
-my time in the cycle (it's about halfway between my periods and this is the time my muscles could be very tight)

So no one knows which one of these or which combination is responsible for my problems. I also may have a yeast infection, but my therapist told me to just keep an eye on it now and wait to see if it gets worse. I've been taken off the dilators until finals are over, but I'm still on the Estrace.

It's frustrating to have made so much progress and almost feel like I'm back to step 1. And if this is due to high levels of stress and working out, then what am I supposed to do? Being active and stressed is just a part of my life, of most people's lives.

But I'm not getting upset yet, I think it's just a bump in the road, and hopefully a week from now, I'll be back on track.

Progress!

I've been to physical therapy twice since my last update and a lot more has happened. I found out the extreme pain I got right around my period occurs because my muscles contract (which usually causes cramping.) Although I don't personally contract hard enough to feel bad cramps, even the slightest contraction is causing my pelvic floor to spasm and clench even tighter. Interestingly, this is also why many women with vvs (self included) have yet to have an orgasm because our muscles tighten up (like they're supposed to), but they don't know how to let go and we can't experience that release.

That session was pretty painful externally and internally. But, I was still given the small dilator and told to do the XS for 10 minutes and the small for another 10 minutes after that. I've gotten much better at relaxing and it no longer hurts to insert.

Tonight the therapy was so significantly less! I was still hooked up to the machine to watch my levels, which is still very interesting to watch. I was doing so well and my therapist said I'm doing "Fantastic." So fantastic that she asked if I wanted to skip a size (small plus) and move right to medium. I seized the day and said of course, so now I'm collecting dilators left and right. They aren't cheap either- $25 each!! I have no clue what I'm going to do when I'm done with them...

So, in short, I'm moving up, and seem to be making sweet, sweet, progress :-) I hope it keeps up!

Ouch

I've had a pretty sharp stabbing pain since Saturday night, which has increased while sitting. For the life of me, I couldn't understand why this was happening. I thought I was making progress and haven't had that type of pain in a long time. Well turns out I got my period Sunday morning. I don't understand why I experience such elevated levels of pain right before I menstruate, especially if the cause is more muscular then hormonal. Will ask this when I go to physical therapy tomorrow.

A Good Wednesday

I came back from physical therapy smiling today, almost the opposite reaction from last week. Today we hooked me up to the biofeedback machine in order to show me how my pelvic muscles contract. It was very interesting to see. My last experience with the machine was awful- I had to insert an extremely large sensor, but this time I had tiny senors put on externally below my vulva.

At rest, my pelvic muscles were pretty calm, at a steady 2 or 3. They would randomly spasm like I had seen before and jump to 20 or 30 and then back down again. I was told to keep looking at the machine while I went through therapy to get a better feeling of when my pelvic floor contracts.

The external therapy was significantly less painful! My right side was very easy to endure, and my left side was much worse, but still better from the last time. Stacey said I wasn't kicking her as much which was a great sign. When it was time for the internal exam, something interesting happened. Stacey was just putting on new gloves and getting lubricant, and my levels on the computer screen jumped from 3 to off the charts beyond 50! My brain anticipated the pain to be so great, my pelvic muscles contracted before they were even touched. Slowly, I tried to calm down and relax. We did the breathing exercises I went over last post and then she had me push my muscles out which can be best described as trying to let out gas. While doing that, it is much easier and much less painful to insert her finger or my dilator at home. My new homework is to insert Excalibur for ten minutes, remove it by pushing it with my muscles, and then re-inserting it for another ten minutes.

Just by beginning to learn how to relax, I feel like I've already made progress. I know this won't be an easy fix, but I finally feel hopeful again. I can't wait until Winter Break when I can go twice a week. As hard as it is to commute into the city and go through the therapy, I'm being proactive. I can do this.

I'm still sore after therapy, but it's not such a sharp pain. It's not a very significant change, but I'm going to celebrate about any slight change. On another note, Stacey wants me to start seeing a psychologist. She says she recommends this to all her patients to help them go through the process. I've never seen one before, but she's been right about everything so far, so I'm going to do what she tells me. I was wondering if anyone had experience with this and could offer recommendations?

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.

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.

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 ;-)

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.

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.

Decisions, decisions

I was not looking forward to my specialist visit today. For the past five weeks I've been in Tanzania conducting research and have had no time to focus on being sick. I wasn't able to continue applying the creams in Tanzania because I was afraid the Estrace inserter wouldn't stay sanitary. I also didn't use my cushion for four of the weeks I was away because I felt awkward carrying it around and I didn't feel I needed it. It was so nice not to think about doctor appointments or medication or my next step or physical therapy or pain levels or anything while I was away. I finally had some peace.

I didn't want to fall asleep last night because I knew I'd have to come back to reality today. I didn't want to be reminded of the battle I'm still fighting. It's an exhausting thing to deal with day after day and I just want to be rid of it. As much as I tried to stay in bed today, I had to eventually wake up and drive with my mom into Philadelphia. The people at the OB/GYN at Hahnemann Hospital are extremely warm and friendly towards me, but it doesn't help. I hate being in that waiting room, that examining room, that office. My body immediately stiffens when I walk in and my vulva pulses with pain because it knows what's going to happen.

I went through the standard exam, which hurt a lot more than the last time I went. I expected this because I hadn't been using the creams for 6 weeks. After a quick exam, we went into the office and talked about our options. It seems like I'm down to three options.

1. Do nothing. Sometimes VVS goes away as mysteriously as it arrives. However, most of the statistics show that if you've had it for longer than 6 months, there's a very small chance it will go away on its own. I am coming up on one year with VVS, so it seems like it's here to stay unless I do something about it myself.

2. Steroid Injections. I go into the office once a week for 6 weeks and get two needles inserted. If I am doing better after those 6 weeks, I continue the injections for another 6 weeks. About 50- 60% of patients are cured from the injections.

3. Surgery. I talked about this in previous posts. Surgery is a 3 month healing process, with absolutely no physical activity for 6 weeks. 70% are cured, 20% are better, and 10% remain unchanged.

I really thought that I was going to schedule my surgery this visit. I am so frustrated with this whole process and a quick fix sounded so wonderful. But as my doctor is explaining the surgery, I realized that he's talking about cutting and stitching up my vagina. It's a big part of me and not something I should be taking so lightly. As much as I would love for all of this to be over, I can't rush into surgery. One of the main reasons I didn't opt for surgery this visit is because I play tennis. I'd have to get the surgery in August, before school starts, which would mean I'd miss the fall tennis season completely. And I love the sport and my team too much to do that. Surgery would also ruin the rest of my summer and I wouldn't be able to go on our annual family vacation to Maine and many other things. 

This is why I decided my next step is steroid injections. My doctor is on vacation for two weeks, but starting on the dreaded 23rd of this month, I will be getting two needles inserted into my pain region once a week at 8 AM. I have to admit, I'm very scared. Right now I am jumping off the table in pain when the doctor uses a q-tip to press against different areas of my vulva. I can't and don't want to even imagine what needles are going to feel like. There's also no way for him to numb the area at all. He said it's very painful and I'll be a little red and swollen afterwards, but at least I can still do physical activity. 

I don't know how I'm feeling right now. It's hard to describe. I'm feeling hopeful, but I'm also worried because my options are slowly fading away. What happens if I'm still in pain and there are no more options left? I'm also petrified to go in and get these needles by myself. I usually am pretty independent, but I would love to have someone there to hold my hand. I am just shocked at what the body can go through. But I guess it can always be worse. 

Anyway, that's the update for today. If you've ever gotten steroid injections, please let me know anything or everything about them so I can be prepared.

To all my sisters out there going through this with me- please keep fighting. We can do this.

To all my readers- thank you for taking your time to listen and please educate others. 

Until next time.

Neglected

I apologize for not updating in a very long time. I have just returned from a 5 week research trip to Tanzania. I've ben distracted, but now I am ready to pick up where I left off. I'm going to be contacting high schools and middle schools the next two months to try and set up dates when I can come speak about VVS and vaginal care. Education is very important in our youth. 

Another interesting fact: I was talking to my mom today and she said when I was younger I had a yeast infection at 18 months and was constantly in the bathtub because I had vaginal infections and redness. I'm wondering if there's any connection with what I have now. I really do think VVS is genetic and was not caused by birth control pills. 

I go back to my specialist this Wednesday to get another check-up. Physical therapy did not end well. I understand I did not go to the best PT, but she also showed me that my pelvic floor muscles were strong and healthy. I'm nervous for Wednesday because we are going to be talking about surgery. I don't know what else to do at this point. I'm tired of waiting.

Physical Therapy, Part Two

Yesterday was my second physical therapy section and it did not go well. Like the last visit, I was taken into a private room and had to insert the sensor. For some reason, it took me a lot longer than my last visit. I talked with my physical therapist about the sensor for awhile. She said she has worked with many VVS patients and is still mystified why there is only one size fits all sensor. No one has taken the time to patent small sensors for women with chronic pain who have difficulty using the sensor. I'm so angry and tired of the medical community ignoring my problem and refusing to make small and easy technological advancements.

I did the three basic exercises last time, and saw some improvement in my resting rate. My therapist also said that resting rates vary with hormonal levels, so it's difficult to note changes over a woman's month cycle. But, I didn't have as much pain during and after the exercises, so I was happy. Then, we did a fourth exercise where I had to tighten my pelvic muscles for two seconds and then rest for two seconds and repeat for about a minute. The first four seconds I was doing fine, and then all of a sudden, my muscles began to spasm. Not only did I feel them, but I saw my levels go crazy on the computer. And as much as I tried to focus on my breathing and not look at the computer and relax, I couldn't get the spasms under control for the rest of the exercise. This was the end of my session, but I had to wait before going home because I was in too much pain. The spasms continued on and off throughout the day, but the direct pain relented after 20 minutes. 

I was upset after therapy but I've been doing better since then. I am just tired of trying things that will "make things easier." I want to be cured. But, I know that things will get better; I still have other options and there are just too many things for me to look forward to. My semester is almost over and I'm leaving for Tanzania in exactly 2 weeks. I have two more visits to physical therapy before I leave, so we will see how things pan out. 

Physical Therapy

So today was my first day of physical therapy, more specifically pelvic floor therapy. I went with a friend to an office about 20 minutes away from school. Going in, I had little expectations, probably because I had no idea what to expect. I think I have purposefully researched very little about physical therapy so I wasn't disappointed. 

First of all, I'll ask the stupid question, what does one wear to vagina physical therapy?? I ended up going in my tennis gear because I went straight from hitting. Second of all, I had hoped that I'd be in my own little room so I wasn't going to be sitting next to some football player who tore his knee. Although that would have been quite the experience. So my physical therapist comes out and takes me into a small room and we go over my entire history with vulvar vestibulitis. I swear, it would have made both our lives easier if I had just given her this blog. But it's alright, I've gotten rather good at recounting what has happened in a short period of time. 

After our little chat, she gave me a sensor that I had to insert that was going to test my pelvic floor muscles and see how tense they are and when they contract. I couldn't find an exact picture, but this one seems pretty accurate. http://www.biolifedynamics.com/xcel-01.gif

So, I inserted the bottom part which then hooked up to a laptop. Then we tested my rest rate of my pelvic floor muscles- they were about 3 (Don't ask me what this number means) and they are supposed to be at 1. But my therapist said they weren't as high as she's seen. Then, I did three exercises where I squeezed my muscles for ten seconds and then relaxed them.

I now have three different exercises I'm supposed to do twice a day, as well as a breathing method I'm supposed to practice. Although I said I went in with no expectations, I guess I was hoping my pelvic muscles would be really bad and that would be the root of all my problems. But, I talked with my therapist and she said it seemed like having vulvar vestibulitis was causing my muscles to tense since I was expecting pain. It wasn't that my muscles were bad to begin with and causing the vulvar vestibulitis. So, even after doing all these exercises, it's only going to help me DEAL with VVS and not help SOLVE the actual problem. And that's just frustrating. But on a positive note, although it hurt like hell to get the sensor in and out, the pain didn't last longer than 10 minutes afterwards. A month ago, I would probably be in tremendous pain the rest of the day. So, small steps, small steps. I go back for the next three Mondays before I leave for Africa, so we will wait and see if I improve. 

Second Set and still fighting

This will have to be a short update because I have a really busy day ahead of me. I'm a little confused right now because it still hurts the same to insert and apply my two creams, yet I'm not noticing as much daily pain anymore. Am I finally getting better? Or am I so distracted on a daily basis that I have learned how to forget about the pain?

I would like to think that I'm getting better. After my tennis match yesterday, I realized I've been fighting VVS the same way I play my tennis matches. Yesterday I lost the first set 6-4 and came back to win the next two 7-5 and 6-1. In my whole tennis career, I've lost one match that I brought to three sets. My dad thinks its because my mental game is stronger than anyone he knows. Anyway, I feel like the beginning 8 months of having VVS was my first set. I was frustrated, upset, and my head wasn't in the right place. Lately I've started the second set and have slowly been fighting my way to bring it to a third set. I have my first physical therapy appointment on Monday. I'm very nervous because I have no idea what to expect or what I'm going to do. If I'm still in so much pain applying my creams, how am I going to get through therapy right now?

Some people have told me that continually saying I am "fighting" VVS and that this is my "battle" is not the best way to view it. They advise to take a more peaceful approach. However, I believe that being in this mindset, just like I am in a tennis match, has helped me tremendously over the past couple of weeks. 

In other news, I'm giving my activism presentation on VVS to my class tonight. It's going to be a little different than the WILL presentation because these are people who don't know me too well. Hopefully they learn something new and spread their knowledge until another girl who is going through the period of misdiagnosis realizes she's not alone.

Specialist Visit

I apologize for the lack of new posts, but I wanted to wait until after this past visit to the specialist. Like I said, my mom had to work today, so my dad came to school and we left for Philly together this morning. I want to pack a lot of information into this post, so I'm going to rush through the exam. For the first time, I didn't have tears in my eyes when my specialist examined me. It was still very painful, but nothing like the last visit. I usually have difficulty walking and sitting after the exam, but today I was fine.

During the discussion with my specialist, a lot of information was brought up which I'm going to do my best to relate right now. He discussed in detail all the possible treatments available for VVS. The first step is to to try applying the steroid cream in hopes that the chronic inflammation will decrease. After that attempt, you try applying the Estrace cream. If that doesn't work, you move on to taking a pain medication, which is usually an anti-depressant (Elavil in my case.) Then, if your body cannot handle the anti-depressant, you use a cream form of the drug along with an Estace cream. This is how far I've gotten. Now I was told all the other possible treatments and was given the choice of what I would like to start. I'm going to put all my options in list form below in order to make it easier to read.

-Series of steroid shots- The theory is that the steroid cream isn't penetrating deep enough into the vulva to make a difference, but shots can reach deeper places and hopefully decrease the inflammation. There are several problems with this treatment. You must get a series of steroid shots ONCE a week for TWELVE weeks (very time consuming) AND these are long needles going into a place that I still can't tolerate a q-tip touching.

-More pain medication- There is also the option of taking Neurontin which is an anti-seizure drug. It wouldn't affect my mood, but it still has the side effects of drowsiness and dizziness. I had a lot of problems on Elavil and was so limited in what I could do and wouldn't want that to happen again.

-Pelvic Floor Therapy (Biofeedback)- This is the physical therapy route that deals with the pelvic floor muscles. Apparently upon examination, my muscles are extremely tight and tense. I can feel myself tightening up right before an exam because I know the pain is coming. I was given a list of PFT therapists, and one is located right in Hamilton Square by school.

-Surgery- This is what I talked about last post- it's called a vestibulectomy and involves cutting out the bottom half of your vulva, folding new skin over the area and stitching the vagina back up. This is what my friend has recently had, and I'm curious to see if she is cured. I would be in a lot of pain the first week, and not be able to play tennis for 6-7 weeks. Apparently surgery cures 70% of those who attempt it, 20% of women improve, and 10% stay the same.

At this point, I opted to go the physical therapy route. I am going to remain on the Estrace and Elavil cream because they seem to be slowly working. My estrogen levels have now returned back to normal. I am trying to get into therapy before I leave for Africa on May 20th.

Other interesting information:

Although there has been a correlation between VVS and birth control- birth control isn't believed to cause the condition. Extensive research has been done that shows it is a genetic disease and that I was born with more nerve endings and chronic inflammation and that a small event triggered these problems to arise.    

For the first time, I came back from the specialist hopeful. I am excited for therapy and also the knowledge that I have other options to fall back on if it's not successful. I want to thank my dad for accompanying me today- it meant a lot. And I also don't want to forget to thank my mom who has repeatedly come with me. Again, I don't know what I would do without such a strong support system. 

I am too tired to think if I have left out any other information. It was a very informative day and I hope some of the things I wrote about today will help at least one other person. I thank all those who continually check this blog- it means the world to me. Please continue to read and please comment! (you are welcome to be anonymous) I want this to be more of a forum for people to share their own experiences, exchange medical information, or even just a place to vent. And it's important to note that you don't have to have VVS to comment. Feel free to talk about any part of your day that was depressing or stressful. Trust me, you'll feel much better after talking/writing about it. Good night all!

And I'm Feeling Good...

Before I begin, I recommend listening to "Feeling Good" by Nina Simone. It goes along perfectly with this post.

Where to begin? I'm so excited to finally write a happy post. My life has turned around completely and I'm finally beginning to leave this state of anger and denial. This past weekend, the 28th- 30th, I decided to go to a blues dancing exchange in Pittsburgh on a whim. I wasn't able to go with my tennis team to upper New York because of the flu/back problems from the car accident. So my good friend Kerry and I, along with Lucky (a young blues teacher from NYC) drove the 6 and a half hours to Pittsburgh and had the time of our lives.

I focused that weekend on making myself happy. I probably danced for 28 hours and slept for 6. And I also met someone. Details aside, it was a big step for me, and it was nice to know that even with VVS I've still got it and am not broken. It was just a big self confidence boost that was greatly needed. I was even able to tell him about my condition and it didn't scare him away. So, to all the men in the world, I haven't totally written you off just yet.

After that weekend, I have just been on this high- I won my doubles tennis match on Saturday, I'm getting involved with a blues dancing documentary... I have been having fun. I think it's so helpful to take the time and make yourself happy. I also think the medicine has finally left my system and my body has regulated itself. People have been noticing the difference in my attitude. Finally! Tamra is back! 

Tonight I made a presentation to WILL (Women in Leadership Learning) with the help of Debbie about being diagnosed with VVS. We always do a presentation at the end of class about women and health- this time Debbie played the role of several doctors and we acted out a shortened skit of my basic story. At the end I told these women the story was actually about me and gave them my blog to read, so hopefully that many more women will now know about VVS. It was a big step to "perform" this presentation and I feel so free after doing it. I have another presentation coming up in two weeks to my class, and then some high school presentations after that. It gets easier each time.

I'll end on a health update on how I'm doing. So far I'm not responding to this medication and I still hate taking it. I go back to the specialist on the 15th and this time my dad is taking me because my mom has work. I'm so happy he took off work and is going to be there for me. He's been so understanding and motivational- I couldn't ask for a better support system. I only hope I find someone who's half the man he is someday. I also recently received a message from someone who has VVS which I'd like to share. She said she saw Dr. Goldstein- one of the top specialists in the US for VVS and he told her she has primary VVS, which means it is a birth defect that she was born with. He said she was born with 10-20 more nerve endings than normal which causes the pain. Dr. Goldstein said the only way to get rid of primary VVS is surgery. I'm going to look into this further and ask my specialist in a week if this is the case. 

I also have a friend who is going through the surgery as we speak. If you want to know more, it's called a vestibulectomy. It is usually the last resort and is a very difficult and draining surgery. I think about her constantly and hope she recovers quickly. It would be another glimmer of hope for me if she is cured. 

Well that was a lot for one day. Thank you everyone for reading. This blog has already been viewed 1,300 times- which means that many more people have now been educated. Yes, I'm still living with a lot of pain. But I don't dwell on it anymore because I've been so happy recently. Dancing has really become my medication and makes me forget. I have surrounded myself with wonderful friends and family. I really couldn't be more blessed. Thank you.

Happy Birthday to me

I swear, all I want to do is write good things and good news on this blog. I don't want it to be a depressing long sequence of events. But I guess that is life right now.

Yesterday was my birthday and I finally got out of my "teens" and turned 20. The day began well- I finally was able to go back to tennis practice after being out with the flu and a million other things. Then I drove off campus to run some errands. On my way back to campus I got rear ended while I was stopped at a red light. It was my first accident and extremely scary. I got hit into the car in front of me and my foot ended up on the gas pressed down all the way. I finally was able to slam on the breaks. Surprisingly, my car seems perfectly fine, but my back isn't too great. I'm going to my chiropractors tomorrow and we will see if I need it X-rayed, etc. 

I know I was lucky that the accident wasn't too bad, but I still consider myself incredible unlucky. I just don't understand. I keep getting caught up with work for school, and then something outrageous happens. I am very happy my birthday ended well though. I wasn't going to let the accident stop me from getting my birthday jam at LAB, a blues and lindy dance in Philly. I'm so thankful for everyone there for making the day so much better. 

I just don't know what to even think or feel anymore. I feel numb right now. I have always been a good student, but I have lost all motivation to be at school anymore. If I didn't have a month left, I would seriously consider leaving and taking a break. I keep looking forward to going to Africa this summer. The last week I'm there, I want to climb Mt. Kilimanjaro. Apparently the school might not let me due to liability reasons. But they don't understand how badly I need to climb it. It would be not only be a physical achievement, but mentally it would prove to me that I am not weak and that I can still do great things. 

My head hurts too much to think of what else to write. I'm beyond frustrated, beyond upset. In need some good news soon. I want to thank everyone for all the birthday wishes- and I wanted to thank everyone who still reads this. I still get a lot of visitors every day and it means a lot. Please continue to comment and share your own stories and opinions. 

Regret

I have been trying to be strong. I know I am a fighter. But I wonder sometimes if I would be single now if I never had vulvar vestibulitis. I am so angry that he left because he was a wonderful boyfriend and we were right for each other. And I am not the type of person to say that casually. I know it's wrong, but I blame VVS. It put such a strain on me, I became a different person because of it. I was acting differently on the anti-depressants, I haven't been myself lately, it's just not fair. I'm tired of all the breakdowns and crying. I can't focus on any of my work even though I have ample time to do it.

Now that I'm single, I'm afraid. Most people are going to know that I have VVS right away since I haven't been keeping it a secret. No one likes dealing with problems, so why would they even consider dating someone who has so many? I know I am young and I have all the time in the world. And I know when I'm least expecting it, I will meet someone. I've heard it all. I just feel very lost and alone tonight.

Stalemate

Three days into my tennis trip in California I got very sick with a 101.2 fever and a diagnosis of pharyingitis, tonsilitis, and sinusitus. Sometimes I feel I can't catch a break. I've spent a good amount of these past 10 days on the couch trying to get my energy back. It hasn't been easy watching the rest of the team being able to play tennis and have fun on their spring break. I think I get so frustrated when I'm sick because I hate watching on the sidelines. I live such an active life, and I don't know how to get it back.

I can handle being sick on spring break and having one vacation ruined. But I cannot handle sitting on the sidelines of my college life. Doctor appointments take up an entire day, valuable time that I can't afford to lose. And if I start physical therapy soon, then that's hours and hours I lose out of each week. Everyone keeps telling me to relax and drop some of the responsibilities I have and focus on getting better. They think it would be best to not participate in as many activities. So far I've been stubborn and refused to let that happen. I feel if I give up some of my passions, I will not be the same person anymore. And if I do try to relax, how do we know when I'm going to get better? I knew that if I rested this vacation, that I would get better and by the time I get back to New Jersey, I will be able to start practicing tennis again. Because I knew I would get better if I rested, it was easier to sit out these past 10 days.

But even if I sit out of activities at school, I still don't know that my VVS will get better. Isn't it better to keep on living your life they way you want to, no matter how hard it gets? If I do less, I may even feel worse because this condition will be affecting me even more. I find myself at a stalemate. Which is the best option? Have any other women found that by relaxing their lifestyle, they have seen better results? Or have you become stronger by maintaining your lifestyle and refusing to submit?

California

So I've been in California with the tennis team for the past 3 days. It's nice to be away from school and stress. The weather is beautiful and the company is great. But I'm still so frustrated with my limitations. The plane ride over here wasn't that easy- it was a six hour flight. I started having problems about 4 hours into the flight, but luckily I was able to convince the flight attendants to give me a bag of ice. My flight to Tanzania this summer will be 26 hours, so I have a long way to go. But I will be much better by then because nothing is preventing me from going to Africa.

I'm still having problems dealing with this "invisible pain." I don't want to act depressed or upset all the time, however I also don't want to pretend that I'm perfectly fine. Sometimes I wish I had an illness that people could see, a big bleeding wound, a broken bone, a shirt that says YES I AM IN PAIN NOW, anything. That's why I think I like the cushion so much because it's the physical representation of my pain. I feel that when people see me bring it everywhere they are reminded that I am still suffering. On the other hand, I'm not asking for people's pity. I don't want people to feel sorry or guilty. I just want them to understand why I can't be myself all the time.

So far I have no results from the medication- I hate applying both of them. Inserting the Estrace is almost unbearable. I am not looking forward to it tomorrow night. But I really can't complain. I'm in California for 10 days with some great girls. They have been so understanding and genuine about the whole matter. I'm so glad I'm spending my Spring Break with them. Sarah wants me to mention I made her a delicious s'more about 5 minutes ago. It just feels so good to be comfortable and open with them. And they all have been reading this blog, which alone is a such a huge gesture for me. I thank all my friends who have been reading.

Our first tennis match is tomorrow and I hope it goes well. When I'm playing tennis, I am distracted and forget about the pain. It brings me a sense of peace and also brings a sense of order in my life. I focus on playing a great sport and spending time with the best group of girls I could ask for. I couldn't stop playing for the world. It's one of my biggest support systems now.

New Person

I want to make sure I don't just vent when things are bad or I'm depressed or in a lot of pain. Today was a good day. I began to apply the expensive mixture cream from Maryland this morning. It hurt badly, and I had to run to tennis practice afterwards. And for the first 20 minutes of practice I was so focused on the pain, but I finally told myself to stop feeling sorry for myself. I just focused on the conditioning and hitting and all of a sudden, I felt wonderful. I need to work on this more. I think I become obsessed at time with having VVS and I think about it way to much. That's why I'm so determined to keep my daily routine. It proves to myself that I'm still me and nothing has changed.

I think I've finally stopped withdrawal from the Elavil medication. I will never ever take anti-depressants again. I can't even describe how I feel now. It's like the old Tamra went away on vacation and is finally back. I don't know what to say, other than I feel ME again. Tonight I went swing/blues dancing in Philly, a hobby that I have refused to give up. Tuesday nights are my time to kick back, dance, and forget the world outside that dance studio. I don't care what state I'm in, or how much work I have, Tuesday nights are my medication. When I dance with someone, I'm able to have  such a connection - it's human contact I don't have to feel guilty about. Now that I'm single, I am very scared to date again because I feel I don't have much to offer and that no man would want to deal with this. Yes, yes, I understand that's not true, but I can't help the way I think sometimes.

Last night I spent an hour and forty-five minutes talking to Kate (who doesn't mind me using her name and is the blessing from last semester that also has VVS.) Talking to her was a breath of fresh air- she has been suffering for over three years now, and it is so useful to hear what she is going through further down the road. 

Although it's been such a great day, I've been putting off my second medication, which requires me to actually insert a cream. I feel like such a coward but I just can't bring myself to do it. I know I have to start doing it tonight to help myself get better. But it's just difficult to inflict so much pain on yourself. But I have to just take a deep breath and go do it now. At least it's only twice a week.

And I have so much to look forward to. I've already reached my low point, so things can only get better. I'm leaving for California with the tennis team on Saturday for 10 days over break. I'm going to spend five weeks in Tanzania this summer doing research with my professor on Mt. Kilimanjaro about global warming. I'm going to climb Mt. Kilimanjaro. Nothing is going to stop me from living my life.

If anyone else ever feels they can't possibly fight any longer, I want you to listen to this song. It's become the new soundtrack of my life.

"Don't Give Up, You Are Loved"- Josh Groban

"Coming Out"

It's been a little over a day since I made this blog public, and I am already relieved I made it. I have been getting great positive feedback. I really think this was a good step and it's already helping me. It's such a relief to let the big secret out and be able to talk about everything in my life. One thing I forgot to do was allow anonymous comments on the blog- that is now activated, so please feel free to leave comments- it could be your own personal experiences, advice, support, questions, anything. I need to begin to catch up on all my work, but I wanted to make a list of some preventative and comfort measures I've been doing.

-Only wear 100% cotton underwear and wash underwear in a separate wash with Woolite.

-I carry around a cushioned tube I got from CVS that I covered with a pillow case. I bring it everywhere and it makes it so much easier to sit down. I recommend this foam tube instead of the blow up tubes you see.

-I do not ride bikes anymore.

-I normally wear rather loose pants, although I hate looking like a "shlump" so I still wear jeans often. I can no longer where my uniform tennis skirts because of the tight spandex underneath and have resorted to shorts.

-I try and take baths as often as I can and put 2-3 tablespoons of baking soda in it with me.

-I do not put soap around my vulvar area but simply rinse with water.

-I changed my soap to a non-scented basic soap- Dove has a lot of good soaps to use.

-I find it VERY helpful to ice/heat the area as much as I can during the day. I wish it was easy to bring an ice pack to my classes, but I'm not sure I could do that. I don't have a great freezer in my dorm, so I actually wet a washcloth and put it in the freezer. I'm icing now and it really helps the pain.

-I'm trying to follow a low oxalate diet which you can look up online. I'm not sure if it works or not, but I might as well try.

-I don't like taking pain medication, but I've tried taking Aleve for pain, although it hasn't helped too much and I don't like using it often.

-When I have my period, I switched to Kotex, non-scented pads, which are supposed to be helpful.

That's all I can think of right now, but please add any other comfort/preventative measures you found helpful (or not helpful I guess.) 

Tomorrow I am going to sit down with all my professors and tell them what exactly is going on so they understand why I've missed class and why I will have absences in the future. I'm very nervous and hope they take it well. 

I'm still in a daze- a lot of things have happened very quickly. But I thank everyone who has made the effort to read this because it does mean so much to me. And everyone who has messaged me- thank you. I haven't been in the fighting mood lately, but you all make it easier to keep going.

Specialist Part II

I did not like taking the Elavil because it made me extremely tired. I would take the medication around 5:00 pm every day because it takes around 14 hours to wear off. I began getting too much sleep, 10- 12 hours a night. And even after getting all this sleep, I still woke up every morning tired and groggy. I became very limited in what I could do because I couldn't function at night. It was difficult to keep up with schoolwork since my days were shortened. But I kept increasing my medication every week, hoping for results. 

Two weeks ago, when I was taking 50 mg of Elavil, I had quite a scare. I had practiced tennis in the morning and was taking a quick shower before my afternoon class. I came out of the shower, put up my bathrobe, and sat on my bed quickly to check my email. Next thing I knew, I had fallen asleep for 3 hours, completely missing my afternoon class and barely making my night class. I had gotten 11 hours of sleep the night before...

These past two weeks I have become extremely frustrated with the limits of the medication and of VVS. I was having pain when running certain sprints at tennis practice. I was always in a state of tiredness and just didn't feel myself. I was also going through a bad breakup with my boyfriend of 15 months. I wasn't sure why he decided to leave, and I still don't know to this day. But I find myself blaming VVS and wishing we could have gone back to a time when I wasn't sick and wasn't in need of so much support and help. I am having difficulty fighting alone now, even though I know I have my family and friends around me. I always wonder if things would have been different if I never got sick.

This past Wednesday was one of the hardest days to get through. During morning tennis practice, I felt increasingly tired, even though I had been getting 12 hours of sleep. I was fine at practice the day before and Wednesday's was no different. Regardless, an hour into the practice I dropped my racquet and excused myself to the bathroom where I found myself falling to the ground, clutching the sink. I burst into tears because I felt awful. I couldn't keep my head up and couldn't keep my eyes open. Luckily my teammates found me and got me sitting against a wall. I was aware of my surroundings, but found myself going in and out of consciousness. I went through another breakdown and I became hysterical, crying because I didn't have control over my body, and I began to have a sharp, piercing, and burning pain around my vulva. The trainer was called and they brought me to Health Services on campus. There wasn't much for them to do, but I did get motrin and iced the area. My head began to feel much better since I was lying down, and my dad came to pick me up and take me home.

The following day my mom and I went to an already scheduled appointment with Dr. Nyirjesy. I know I have been describing the exams as excruciating, but this time was the worst it's ever been. I was trying to be strong, especially because my mom was sitting there and she gets very upset when she sees me in pain. But I could barely keep my legs open and I started tearing. Why are things getting worse? What am I doing wrong? And how much worse can it get at this point? Yet again, we went into his office and decided on a new plan of action. I have been taking off the Elavil, although I'm still taking one pill at night for a couple of days because I am going through withdrawal. Sometimes I get very bad headaches and nausea, but these seem elementary compared to what I'm used to dealing with. I have now been put back on the Estrace cream twice a week. This is because for the first time, my tests from inside the vagina came back showing very low levels of estrogen. I do not know why my levels are so low- the doctor said high intensity athletes tend to have less body fat and produce less estrogen, so it may be getting lower the further I get into regular tennis season. 

I have also been put on an Elavil cream twice a day to prevent any further side effects. It is a mixture of medicines that has to be made in Maryland and then shipped back to me. He also told me it's time to think about physical therapy 2-3 times a week, but he doesn't want to start that until 6 weeks or so after applying these creams so we can tell what exactly is working. I don't know when I'm going to have the time for therapy, but at least I'm not sleeping 12 hours a night anymore.

I had another breakdown Thursday night after going to the specialist. Sometimes it feels like a wave of emotions just hit me and I start crying and thinking I can't go on like this anymore. I am so tired of fighting. But I want to mention that I called home Thursday night and my dad (so far unmentioned) was the one who helped me turn myself around. He gave one hell of an inspirational speech on the phone. He told me to keep fighting because I am not a quitter. Since I didn't want to be alone Thursday night, I called a good friend and spent the night with her. I can't thank her enough for being there for me. After having these people pull me up, I got inspired to write a blog about everything going on in my life. I felt it was the perfect opportunity to release all my emotions and finally inform people in my life what I'm really going through and maybe they'll have a better understanding. I also want so badly to help other sufferers. I know I'd jump at an opportunity to read what another woman is going through and be able to comment, ask questions, and learn new information.

I end today utterly exhausted. Tomorrow I have to begin to catch up on all the schoolwork I have missed. I am not looking forward to talking to my professors on Monday and explaining why I missed so much class. I wish so badly at night that I'll wake up in the morning and things will go back to the way they were. I want my life back. I still don't accept this burden I have to carry. I feel I don't deserve it and it is the last thing I want to deal with now. The pain has been so bad lately and I don't know what to do. I hate not having control over my body. I want order. I want peace.

Specialist

I remember being excited to go see the specialists at Drexel OB/GYN. I looked them up online and many argue they are the best in the country. I felt my problems were finally going to be solved. I went with my mom on the first visit. Dr. Nyirjesy examined me, which was again, extremely painful. My knees would shake, but I found if I just focused on slow, steady breathing, I was able to make it through. However, the area burned and stayed at an elevated pain level several hours after the exam. He then called me into his office to ask me several questions. I opted to have my mom stay with me in the room. I am so blessed to have such a wonderful relationship with her. It's important to me to tell her everything in my life and because of that, she is the best support system I could have. 

After going through an intense questioning period, the doctor confirmed that I did have vulvar vestibulitis. The inside of my vagina was perfectly normal, and all tests came back negative.  He said that there are multiple treatments of VVS because it is a highly individualized condition. Different things work for different people. He was going to start me with Estrace, a cream I would apply twice daily to the painful area. It was supposed to increase my levels of estrogen and get my body back to normal. The doctor told me that 75% of women get better because of Estrace. I walked out of the building feeling confident and relieved. I finally got answers and was going to get better.

Unfortunately, I used Estrace for six weeks, and my pain only got worse. I dreaded applying the cream twice every day because it hurt so much to put it on. And it wasn't a short pain- I hated it because I had to deal with it throughout my day. It was so difficult. I felt I was living with this big secret. No one could see I was sick, so I had to act like I was fine. I just wanted everyone to know exactly what was wrong and to understand what I was going through. Even though I had the support of my family and my ex-boyfriend, I felt I was carrying the burden by myself.

The second time I went back to the specialist, I had to go by myself because my parents both had to work. I did not see Dr. Nyirjesy because he was on vacation, so I saw Dr. Weitz instead, a woman who had worked with Dr. Nyirjesy for years. I was actually pleased to finally see a woman doctor. It just made more sense to me because I could connect better with her. The exam was absolutely excruciating. I could tell immediately I had gotten much worse- she said the area was inflamed and red. However, my tests on the inside still came back negative. We later met in her office and I just broke down in tears. I am not the sort of person who cries often. I don't cry at movies, reading books, at funerals, when I'm hurt, I just don't. But in the office that day, before she barely even started talking, I broke down. Because it was getting so much worse and I was so confident six weeks ago that I was almost at the end of the struggle. And Dr. Weitz proceeded to tell me that there is no cure for VVS as of now. We are simply trying to get the pain levels under control. But like a chronic pain condition, there will be flare ups. I could barely absorb the words. This was something I was going to have to deal with for the rest of my life. I could no longer see the end of the tunnel. It was no longer something I had to beat, but something that I had to learn to carry with me. I was hysterical and I was alone. I got back to my ex-boyfriend's apartment later that night and broke down even more. I became so upset, he called my parents because he had never seen me like this before. I consider myself a strong person, and very rarely do I break. I'm a tennis player here at the college and although I may not have the best strokes as everyone, I always fight through every point. And I always have the strongest mental game, pushing my opponents to three sets, refusing to give up. That night I gave up because I didn't see how I was going to do this.

But, sure enough, I woke to a new day. I began my new treatment prescribed by Dr. Heitz. I applied a steorid cream twice a day to the area and took Elavil, an anti-depressant. For some reason, anti-depressant medication is used for many chronic pain patients. You have to build your tolerance to Elavil, so I started at 10 mg (one pill) and increased by 10 each week, ultimately building up to 150 mg! However, as you will learn in my next post, I only made it to 60 mg.