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.