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.
13 comments:
Thanks for the update, being pain-free must be a relief! Definitely gives me hope :)
Congrats!!! Great news, I will ask my Dr. about Botox injections. Thanks for the info!
How often do you have to have the Botox injections?
I went to my pelvic pain specialist today (I've been dealing with vestibulitis since I got married almost a year and a half ago with no successful treatments).
He told me I had 2 options: having a series of Kenelog/Lidocaine/Marcaine injections or going through a vestibulectomy. He did mention the Botox, but he didn't talk about it too much as an option. However, if it worked for you, I would much rather try that than have that surgery (I'm in optometry school seeing patients, so it is almost impossible for me to get out of school for 2 weeks at a time to recovery). I had my first injection today, which hurt SOOO bad, but I'd rather go through injections that worked than go through surgery. What do you think I should do?
~Jennifer
I've only had the BOTOX injections once-- so far so good. I would definitely try BOTOX before vestibulectomy. The injections were not painful-- I took a vicodin beforehand and my doctor did not use numbing agents when injecting the BOTOX because she wanted it to be as clean as possible... make sure he is using a 30 gauge needle no matter the type of injection (unless he is doing a pudendal block and then the needle is bigger but it injects in an area that doesn't hurt)... my doctor - Anuja Vyas at Baylor College of Medicine in Houston- I highly recommend her and if you have the resources I would consider a trip to see her (though you would have to coordinate beforehand about getting the botox because they have to order it and it takes 9 days from the time they order it until it comes in)... email me at vestibulectomyjournal@gmail.com and I will give you her contact information.
I just had a vestibulectomy last week. Although this past week has not been a walk in the park, it has been A LOT better than I expected in terms of pain and mobility. I had the surgery on a Friday, and then took this whole week off from work, and will be going back on Monday.
I just wanted to know how are you doing?? I aldo have vulvodynia and see Dr Vyas in houston and Dr brown..I also see a pain dr>>are you cured???
Hello there - thank you so much for this blog - I really appreciate it. This condition can feel very lonely...
I'd love to know how you're going now, all these months later. Are you still having Botox shots? Are they still working? Fingers crossed!
I am also very interested to see how you're doing. I've failed many many treatments; I am currently doing a series of kenalog/lidocaine injections but have also considered botox/surgery. I also have absolutely no muscle component so my dr and I didn't think botox would be a feasible treatment option. I was interested to read more about your understanding of the mechanism.
Thanks for taking the time to write this blog! It has been an invaluable source of information for me.
Hi- I am going to see dr. Vyas next week and wanted to see if the relief from botox lasted?
Hi!
I'm from Brazil, and I have vulvodynia. I've been in physio for about 7 months, and now my doctor wants to try botox. I'm happy and excited about that. Your post have encouraged me even more!
You told that one of the injections was just below the clitoris. Did it affect your sensibility on that area? I mean, the pain is gone, but, the good sensations, the orgams, is it still the same?
I have been in physical therapy on and off for two years and never been pain free since I first had sexual relations, so six years.
I have been recommended for botox and have signed up to do it in a week or so. How painful is it, during and after? How long does it take to recover? Also, you say it's effective for your pain, which gives me great hope, but was this after only one round? Are you still pain free? I am really scared but I have so much pain, I think it might be worth it.
it's amazing that you got cured, and thank you for posting this !
i'll look into this treatment
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