Vulvodynia and botox -- yes, it did work... but not forever.

Wow! I'm so sorry I haven't updated this blog in a long time. I see the traffic reports every week and am continually amazed at how many of you there are searching for answers, searching for hope. Vulvodynia sucks.There are very few people who understand how severely it can affect one's emotional, physical and mental life unless they're are also sufferers.

Nothing has changed. I still have localized, provoked vulvodynia (vestibulitis), but the BOTOX was effective in masking it. The botox injections worked in relieving me of 99% of the pain, but the effects wore off some time after 6 months. I haven't gotten more injections yet because I am not in a relationship and haven't been since I had the original BOTOX injections.

I think the intervention came too late for me in that my mind had already made deep associations between pain and sex-- to the point that when I finally was without pain and could have pain-free sex, I no longer desired sex or desired to be in a relationship. It seemed easy not to think about it and to focus on work and other things in my life, but recently I saw my gynecologist again and she reminded me that I actually do want to be in a meaningful relationship, do want to have sex, do want to have children.

So, I'm going to have another set of botox injections in a couple months. I think having the injections even though I'm not dating will help me begin the process of entering the dating world again. I'm a very analytical thinker, and I spend a lot of time in my head-- some of that time I spend thinking, 'well I don't want to go on a date or put myself in that position because then I will have to make an appointment with Dr. Vyas, get botox injections, etc etc and then the date or relationship might not even work out so why even bother?' That's kind of how I think. But I'm going to make a run-around my own way of thinking and get the botox preemptively so that line of worrying/thinking will no longer be open to me.

Another thing I'm going to do is see a therapist who focuses in sex issues, including vulvodynia and painful sex. I probably have a lot of mental trauma built up from the time I became sexually active until the time I found a doctor (Anuja Vyas at Texas Children's / Baylor College of Medicine) to truly intervene and begin helping me emotionally and physically process this huge burden of having vulvodynia.  So the length of time that I was dealing with it to no avail, often with no treatment at all, was about 7 years. I was in different relationships during those years and they always ended disastrously because of my vulvodynia. And I'm traumatized from that. Not from the relationships ending (dodged a few bullets) but from what went on in the relationships. Even though I knew sex was painful, I let myself say OK to having sex to my partners in those relationships, even though deep down I did not want to say OK because it fucking hurt. I feel weak for having consented to that and I also feel somewhat resentful of men in general for knowing that sex was painful for me and still wanting and going ahead (with my consent) with having sex with me. I need to sort out these feelings before I can date again so I'm going to see a therapist to help me with that.

A lot of people write to ask if insurance covers the Botox. The answer: I do not know. Last time (in 2011) I just paid out of pocket (around $800 total) because I wanted to see if it would work and didn't feel like bothering with the insurance company. This time I will probably pay out of pocket and then submit a claim for them to cover it. I don't know much about how that works so I'll write updates here on my blog. I promise to update this more often than once every 3 years. I want everyone to have as much information as I have. Last night I Googled "vulvodynia and botox" and "vulvodynia" and started reading women's blogs and posts on various forums about their experiences with vulvodynia and I had to stop because I realized it was making me depressed and angry. Angry that some gynecologists are still attributing it to psychological problems or angry that some gynecologists offer virtually no help to their patients -- at the very least all gynecologists should know the names of other doctors in the area who are more familiar with this condition.

This was my general update post so I don't want to make it much longer. I'm going to write 2  additional entries in the days to come-- about my recent visit with my gynecologist who is pulling me out of this funk and about the need for a greater emphasis on simultaneously addressing the mental and emotional effects of living with vulvodynia when the patient initially presents to the diagnosing physician.