BOTOX success / botox and vestibulitis, vulvar vestibulitis syndrome, vestibulodynia, vestibulectomy

Well... I am finally pain free and can have 100% pain-free intercourse thanks to BOTOX!

First, I should note that I do not have any pelvic floor dysfunction-- I've been to physical therapy with an experienced pelvic floor PT and had my muscles tested via electromyography. I had no hypertonicity in the muscles and no pelvic alignment issues.

Botox can be ordered in 50 Unit vials as well as 100 and 200 Unit vials. My gyn ordered a 50 Unit vial and injected 25U (about 0.7ml) into my lower vestibule at 6 o'clock. She pointed the needle toward the 5 o'clock position since I had most of my burning pain in my left vestibular area. She injected the other 25U (0.7ml) in the perineal body, which is the point midway between the vagina and the anus. It is where the bulbospongiosus and external anal sphincter muscles, and the levator ani and transverse perineal muscles attach. As far as I know, at least according to published literature, this is a novel approach for the treatment of localized, provoked vestibulodynia. I noticed a response by 48 hours after the injection. I was totally pain free after 48 hours and have remained so. It may be that this should be a first line treatment for localized, provoked vestibulodynia but more research is needed in order to conclude that.

After the success of the first 50Unit injection in the lower vestibule, we injected the upper vestibular area with another 50Units... she injected right below the clitoris in the 12 o'clock position and then around the 3 o'clock position.

A 50 Unit vial of botox costs approximately $350 and can only be ordered through your doctor (i.e., it cannot be called into the pharmacy).

If you are going to have BOTOX injections I would make sure to go to a provider who has done it before. I was my doctor's guinea pig but she has incredible clinical instincts and I trusted her implicitly from the beginning. We both did a lot of research (only 7 other published studies have tested botox for vestibulitis and related conditions and 3 of those were individual case studies. The ones with multiple subjects all had mixed results). I think it is important to distinguish general vulvodynia from localized, provoked vulvodynia/vestibulitis. That may be the key in determining who will benefit from BOTOX injections. Maybe botox will become first-line treatment in the future. We can only hope.

A lot of people have the mis-perception that botox is only for muscle issues but that is not true-- the botulinum toxin actually paralyzes the nerves so that they cannot send pain signals. It is also hypothesized that botox depletes the area of Substance P, a protein that acts as a neurotransmitter and is responsible for inflammation and pain.

Given the cost of the surgery, and the recovery, I think it might be worth trying BOTOX before surgery. It might even be worth traveling to a provider who has done the BOTOX with success before, like my doctor has with me.

Steroid shots, symptoms, pain, BOTOX

Well I think I might be experiencing less pain now but I seem to have developed pain in other areas. For example, deeper in around the 9 o'clock position. It's definitely not muscle pain either-- it is nerve pain... like a straight line of pain emanating from that area. I've noticed less pain around 3-9 in general, but if I put pressure on the 12 o'clock area I have more pain.

I don't know if the decreased pain is from the steroid injections (would make most sense given where the pain has subsided and where it has not) or from the increased doses of desipramine and gabapentin that I'm taking.

My doctor finally gave in and agreed to do Botox injections. I am not going to even try dealing with insurance over the Botox so I will pay out of pocket for them. I think it's worth it if it provides a permanent or even semi-permanent resolution of my symptoms. I don't want to take meds for the rest of my life and I'd rather not go through painful pain blocks, which I would require several of, before trying the Botox.  It makes the most sense for me to do it in that order. I love my doctor. I sent her some information on impar ganglion blocks and she researched some pain specialists that could do them. She really goes out of her way to help me. Well, actually I think she is just being a good doctor and that all doctors should be like her, but since so few are, her behavior really stands out.

Steroid injections, 3rd round f/u and other things

I've been using the dilator and sometimes I think the pain has decreased and other times I feel I am having pain in new places - like the 12 o'clock position. It is so frustrating.

I talked to my doctor on Friday and she kind of said that she didn't think the steroids were working since the pain hadn't decreased with the dilator use and that with the steroid injections the effect would be pretty immediate, which is the impression I was under also. We decided to up my desipramine dose to 100mg/day and my gabapentin to 600mg tid. I have the best doctor.

We talked about Botox and my doctor impressed me with her knowledge of it after correcting an incomplete idea I had of its mechanism of action. The problem with Botox is that there are not enough vulvodynia pts in her clinic who would need it and so the cost is not justified. I have said that I will pay out of pocket the full price for a vial of Botox. I want this issue gone more than anything.

Steroid injections, efficacy? and side effects of round 3

Well, I had my steroid injections on Monday and my pain is definitely not as bad as it was after round 2 but it is still present. Last night I used the dilator and had significant pain (I would say 6/10 in terms of pain upon entry and pain with movement/pressure). I feel scared that these aren't going to work and I will soon exhaust all treatment options. Then what?

On a side note, right now I have generalized pain (I think I only get this unprovoked pain the day after I use dilators or one or two days at certain times in my cycle- I usually try and keep track of when the generalized pain occurs on my calendar). Anyway, I would like to take a Vicoprofen but I don't feel that I can or should.

(Also, another helpful pain reliever: ice/cold gel packs help with the generalized pain but I basically have to lie down and do nothing, which makes me feel pretty useless.)

Side effects, steroid injections round 3

Yesterday had lots of soreness but today not so much-- only when I sit totally upright. I'm not going to look for bruising unless I feel a different level of pain because it freaked me out so much last time I saw it. I have a pain  around the 12 o'clock area, which is weird because I don't think she injected any higher than 2 o'clock.

I don't want this blog to seem all doom and gloom-- I have a big part of my life that isn't focused on vestibulitis, but this blog is purely to shine a spotlight on my issues with vestibulitis/vestibulodynia/vulvodynia and this is where I am in my struggle with it right now. Some days are more hopeful than others. I've undertaken this endeavor (blogging) with an enthusiastic spirit, not a cynical one and I hope to reflect on my experience as candidly as possible.