Looks like Botox is next?

Hi ladies,

It's been awhile since I joined the site and introduced myself- As a quick recap, been suffering from vulvodynia for over 2 years. I used to get burning each month, but that has gradually stopped (for the most part). I am taking 10mg of ami, but the burning subsided before using, but I'm continuing to take as a preventative.

So now my main symptom is this swollen/achy feeling all of the time.. I don't have trouble inserting tampons or wearing jeans/tight clothes, it's just this constant ache. Thing is, even when I feel swollen, no doctor/specialist who has examined me could see physical swelling. Luckily, the vulva specialist I last saw didn't try to tell me it's in my head (the worst, right?) but said she believes what I'm actually feeling is due to tight muscles. After that, I started doing pelvic PT, which really got me down b/c I felt 0% improvement and would sometimes flare after appts. I'm doing trigger point injections (steroid/lidocaine) and these actually help, but only for a few days. I had an MRI and I do have osteitis pubis symphisis, which may be contributing to my discomfort but no direct action on what to do to help since PT isn't- considered a chiropractor but can't find one who specializes in "this" type of pain..

So next up.. dr. is suggesting Botox. I am scared, not for the needles or even the side effects. But terrified this isn't going to work and I won't know where to go from here. I feel like I've tried everything to get my life back; wasted so much energy, tears, time and money on trying to fight this and this seems like a "last resort." If it doesn't work, I just don't know if I'll be strong enough to pick up the pieces.

Has anyone else had any success with botox? I will keep anyone who is interested posted on how it goes.. trying to get an appointment soon.

I haven't tried botox - in fact, I'm not even sure it's readily available here in the UK for pelvic pain - so I can't offer any advice as such. But I'd be interested to hear how you get on with it if you try it. I have very tight pelvic floor muscles, but I am finding some benefit with PT.

I can totally sympathise with spending all the tears, time, money and energy. I think vulvodynia is so poorly understood by many in the medical profession and so badly catered for that treatment success depends a lot more on patient knowledge and willpower than it does for many other better understood medical conditions. I hope things improve for you soon