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.