Monday, September 21, 2009

Not So Funny

Tonight I was browsing a site called Yahoo Laughs that has a bunch of weird/amusing questions from Yahoo Answers.  I personally find these hilarious (the stupidity of humankind often makes me smile), but I came across one I couldn't laugh at:

"When I have sex with my boyfriend, it hurt's like it's not wet down there, but it is...does anyone know why?"

Naturally, this hit a little too close to home for me.  I followed the link to the original question, and as I expected, most of the replies were people saying she needs to use more lube, get herself more excited before sex, etc. (One helpful man even suggested that perhaps she doesn't like dick, and should become a lesbian instead). 
Now, of course, I have no way of knowing why this girl is having painful intercourse.  There could be dozens of explanations besides vulvodynia. But it made me wonder how many women and even young girls out there are feeling confused and frightened because they have this condition, and no one can tell them what it is.  I searched "Pain with sex" in YA, and there were countless women who were complaining about the same symptoms.  It made me want to find every one of and tell them that what they're experiencing has a name, and that they aren't alone.

Recently, I've been thinking about the problems men experience with sex (erectile dysfunction, premature ejaculation, and such).  It's just silly, how much media and scientific attention is paid to these conditions, while so few people have ever heard the term "Vulvodynia" (for example, I just had to input the word into Blogger's spellcheck).  Everybody can name a medication for ED, and the FDA is currently reviewing a drug that counters premature ejaculation.  Yet only 5-10% of men will experience ED by the age of 40.   Percentage of women who will experience symptoms of vulvodynia? 18%.  Possibly higher.

Granted, 20-30% of men experience PE, and the chances for ED spike after age 70, but honestly?  Vulvodynia sufferers are actually experiencing physical pain, some of them constantly hurting.  This is in addition to the emotional and mental trauma that comes with not being able to perform sexually (or even performing in spite of the pain).  And I'm not saying that ED and PE sufferers don't deserve the attention and research to cure their conditions.  But don't we deserve it too?  Can't there be a little blue pill that we can take before a big date, rather than enduring months of physical therapy and experimental treatments in the hopes that we can have sex once every few weeks?

It's just not fair...

Friday, September 11, 2009

New Treatment

So I went to the gyno on Tuesday, and reported that I'd had little success with the clobetasol treatment.  She told me there wasn't much else she could do for me, and said I should try to find a specialist.  I'm going back to school soon, and my university has a pretty nice medical center.  Hopefully I'll be able to find someone who specializes in dermatology and gynecology (as she suggested).

The only thing she could suggest was a low-dose antidepressant.  I've read about this treatment in my desperate scouring of the internet for any information on VVD, and it intrigued me.  I was taking antidepressants up until several months ago, when my medical insurance changed and my therapist couldn't cover me anymore (I've toyed with the idea that the VVD pain flared up because I stopped taking the antidepressants, but I'm pretty sure the pain started before my prescription ran out).

So now I'm on a very low dose (10mg) of Celexa.  Even though this is the same stuff I was taking before, my Doctor was very concerned about the possibility of it causing me to have suicidal thoughts, which happens every so often with antidepressants.  So she only gave me two weeks worth, and instructed me to call her and tell her how I was feeling after the supply ran out.  She was adamant that she wouldn't prescribe me any more until she talked to me directly over the phone.

I'm kind of annoyed about this stipulation for several reasons.  First, because I've been on a higher dose of this same drug before and I was fine.  Second, because it means I will have to call her secretary and list times of the day when I will be available, so she can call me back in between her appointments.  And lastly, because I really, really hate talking on the phone, especially with people I don't know very well.  It makes me very uncomfortable.

But, I am feeling hopeful.  I'm on a new treatment, one that many women have had success with (plus I'm still kind of clinging to the hope that the pain flare-up coincided with my prescription running out).  I have to find a new doctor again, the third one I've seen about this issue, but at least I know what I'm dealing with and can look for a doctor who knows how to help.

Things are looking up.

Tuesday, September 1, 2009

Hello, There

I've recently come across a bunch of blogs about women dealing with vulvodynia.  Since my diagnosis, I've been feeling...not exactly lonely, just isolated.  Full of thoughts and feelings, with no one to spill them to (no one who would understand, anyway).  So I've decided to give this a try.  I'll throw my own voice into the cacophonous mess of weblogs, and see if anyone hears it.

First things first, I guess I should start with some basic info about me and my condition:

  • I'm 19 years old, in a steady relationship of nearly a year.
  • I live in California, around the Bay Area
  • I've been experiencing vulvar pain for around 7 months now, but was only diagnosed with vulvodynia a few weeks ago.
  • My symptoms are limited to vulvar pain with intercourse; luckily, I don't feel pain from simple touch or prolonged sitting.
  • My doctor has me using Clobetasol Proprionate steroidal ointment three times a week.
  • Self-diagnosis using the internet has led me to believe I have Vulvar Vestibulitis Syndrome.   
 So how am I doing?  Not well.  Terribly.  I'm scared.  All the research I've done online so far, reading up on treatments and hearing testimonials from other VVD sufferers, has not yielded a positive outlook.  It appears I'm in for months, if not years, of OBGYN appointments, physiotherapy, and a myriad of treatments, all working towards a small chance that someday I could be 90% pain-free.

I feel so helpless. I've been perfectly healthy all my life, now suddenly I have a disorder that has no cure.  A disorder that many doctors have never heard of.  A disorder that was featured on a 20/20 segment entitled "Medical Mysteries." I'm using a treatment that explicitly states "Do not use intravaginally. Do not use for more than 2 weeks,"  yet I'm doing both.

The thought that I may never again have a normal, healthy sex life makes me want to cry.  I'm only 19 years old and in college,  I should be having sex all the damn time.  But instead, I haven't had a satisfying sexual encounter in months.  I miss being intimate with my boyfriend, B.  I feel guilty, because I'm his first sexual partner but we only had a few months together before this got in the way.  I'm envious of couples I see on TV who can have sex any time, anywhere.  I am amazingly frustrated, and aware that it could be years before this goes away.  If it ever does.

I need help.