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.
