Whelmed

I had one of those days where I was just overwhelmed with information and thoughts and could not wait to get back and home and get them on paper. Well in this case, virtual paper...

I think big steps have been taken when women started blogging about vulvar vestibulitis because it is such a taboo subject. There are countless women afraid to speak out or even discuss it with their friends and family. It is much more difficult to have a support system and vent about your frustrations. Although this is a big step towards awareness and social acceptability, there's still many topics that are not discussed.

One of these is sex and sexuality- something I have really glossed over until now. If society thinks talking about your vagina is taboo, talking about sex is certainly worse. But at this point, I cannot be silent about it anymore.

I think one of my biggest issues is that having vulvar vestibulitis is so commonly linked as a sexual disorder, when that isn't the case at all. It's sexualized because it deals with the vagina. However, that doesn't mean it has no affect on my sexual life. After a discussion in class about sexuality today, I started thinking more about things I have tried to just push aside and forget. That's not healthy- these are issues I have to deal with.

I have not had sex (in the terms of sexual intercourse) for almost two and a half years now with my ex-boyfriend. I have only been with that one person, and the last time we had sex was when I realized there was something wrong with my body and my journey began. Since that point, a lot has changed. I have not been able to keep a stable relationship since, and the main issue is because of having VVS. There are a good number guys who listen to me explain my story and then run away. There are guys who simply don't want to deal with it. And then there are guys who do seem to understand, but it still doesn't work because I feel an enormous amount of pressure to not only get better, but almost make up for the lack of intercourse with other things. Sometimes this pressure is self-imposed, but my general experience has been that there are very few men out there who can handle this situation, which is very frustrating for me.

I have loved being single these past years, but only to a point. Everything goes well until they either find out or I tell them about my health issues. Once that information is out, it becomes the elephant in the room. But I'm deviating slightly from my main agenda.

I think one of the hardest things I face other than the physical pain and constant doctor appointments is the fact that I no longer feel like a sexual being. I understand that sex isn't just about intercourse, but it is just very difficult to take it out altogether. And I'm not trying to paint the male population as immature, sex-driven assholes- it's more of a critique of society and its standards.

We had another discussion in class about what identity you feel encompasses you the most- whether it be race, class, sexuality, or gender. A lot of people talked about being a woman or being a student... I sat there silent because at this point I identify most with having vvs and constantly being sick. My health is currently defining me, and that's something I can't really escape. I can try to push it to the back of my mind and focus on other things, but it doesn't change the fact that when I wake up in the morning and when I go to bed at night and when I am just thinking to myself, it constantly overwhelms my mind. Like I said in my previous post, I have such a huge support system that I am eternally thankful for. Right now I just wish I could reclaim my sexuality and have that back in my life. I don't need a relationship or someone to take care of me. I guess I just want to be wanted and have it be completely okay that there's only so much I can do when it comes to physical activity. And also have it be okay that just because I can't have intercourse doesn't mean I'm going to do everything else to make up for it. I hate that pressure.

Hopefully some of you can relate to this and hopefully offer some more thoughts or advice or stories. From all of your emails, I know it's a huge issue we face daily and too be quite honest, I'm tired of not talking about it.

Competition and awareness

Before I talk about some exciting news- I want to do some quick updates. Things seem to be going smoothly. I'm still going to physical therapy once a week in New York and it gets easier every time I go. I really do think within this next year I am finally going to be rid of this. I have started using dilators every night and while using them I do hip stretches and exercises. Hopefully this will help increase blood flow and make my skin healthier.

As you can see there are some new changes to this website. First of all, I made a motivational playlist for your listening pleasure while you are reading. These songs have gotten me through many tough times and I hope they help you in some way.

Also, to the right you can see that I just entered into Wellsphere's HealthBlogger competition. I've decided to enter in hopes of providing more awareness about vulvar vestibulitis and vulvodynia. I've read too many personal emails from women who are too scared or embarrassed to talk about their problems and don't know where else to turn. I've been to too many doctors who either do not even know what my condition is or give incorrect medical advice. Change must happen. So I'm hoping to do well in this competition in order to educate even more people about what we have to go through every day. Please click the vote button on the right side, and submit your votes on Wellsphere. We can do this!

Finally (sorry to overwhelm you), I sent out the following message to a few of my friends. This letter also has a lot to do with all of my readers, who have been there for me numerous times. I'm reposting it to thank you all, and to also encourage you to send a similar message to your own support systems. Too often people don't realize the difference they make in your life until it's too late.

Dear friends old and new,

I'm currently writing this in my notebook as I ride the train into New York. I watched something this morning that has overwhelmed me with gratitude and inspired me to reach out to each of you. I am facing my share of struggles, but they have not and will not break me. This is only because I have the strongest support system one could hope for. Each of you has made an impact on my life. Each of you has lessened my pain in some way, whether big or small.

A mass message may seem silly, but I felt compelled to offer my thanks. We might not be that close and we might not still be in touch, but I have memories with each of you that make up the person I am today. Many of you do not realize the difference you have made in my life. Things as small as listening to my fears and complaints, driving me to doctor appointments, making me smile and making me laugh, encouraging me, dancing with me, holding me, helping me catch up with my work, and many many others. The little things matter. And they have been my best medicine over the past two years.

As I sit here today, I am more at peace than I have ever been. And it's because I know what ever mountain lies in my path ahead, I don't have to climb it alone. I wish I could give back to each of you the strength you have given me. I am so grateful. Thank you.

Have a great day and don't forget to vote!

Bump in the road

Again, I am sorry about the lack of updates. Things have been pretty crazy recently. While I was dealing with the increased pain in my hip, I also got sick. It is a very long story that's not relevant to this site, but the short version is I went on antibiotics for tonsillitis, and then 5 days later had to go to the emergency room because they swelled up more, hurt a lot, and I was having difficulty breathing. Turns out they were starting to close my air passageway. I spent a week at home on steroids and a stronger antibiotic. Finally I am off medication and can put it behind me. The good news is I was forced to take a week off from life and spent the time with my family, sleeping on our couch downstairs. It also taught me the importance of not running myself down. I have a lot on my plate at school and it piles up. It literally took two doctors and an ER visit to force me to stop and relax.

The funny part of this story is that the steroids I was on for the tonsillitis have helped my hip calm down even more. I also felt that the week off from all my obligations has made me a lot healthier. Now the problem is I'm trying to catch up on everything that I missed. And, I will be getting my tonsils out in November, which is a surgery that I need to be home for two whole weeks. Luckily my professors are very understanding, I just need to make it through this year so I can graduate.

As far as my progress is going- I went to physical therapy last week and the difference in results was incredible. I'm having a much easier time sitting, and this time when I got my period, I didn't have any of the usual painful symptoms that escalate everything. There has been definite improvement. Now I am allowed to go back on the elliptical about three times a week, slowly, for about 15 minutes. I am also supposed to start up the dilators again, starting from the smallest size, and doing my hip stretches while using them. This I will start in a few days once I feel completely recovered.

Other than that, life in general has been pretty great. I feel like I'm on an upward swing. I'm also trying to appreciate every moment. If you want an inspirational song- check out Terra Naomi's, "Say it's Possible." It's good stuff. More exciting is I have emailed her and she is now coming to school to perform a benefit concert on November 2nd!