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.