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.