PCS and Topamax: Hi everyone... I had... - Pelvic Pain Suppo...

Pelvic Pain Support Network

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PCS and Topamax


Hi everyone... I had major uterine fibroids during my pregnancies and vulvar varicosities. Fun pregnancies, right? A year after my last pregnancy I had an abdominal myomectomy, nearly 8 pounds of healthy/plump fibroids removed from inside and outside of my uterus. It to longer to heal from that then either of my emergency c-sections, but luckily, a lot of my pain and vericosities went away over the next year, yay!

In the last 4 years I’ve had my usual crappy heavy periods, terrible ovulation, ups and downs with different birth control, ejected iud, but I’ve had small breaks from pain and the ability to work out and have sex, play with my kids, go to work, stand, grocery shop, travel, etc.

Over the last 5 months everything has changed. The vulvar vericosities have returned, not as bad, but the internal pelvic pain has come on like a monster. Increasing daily to where the more I do (standing to cook, clean up dishes, walk the dog) I’m in agony in the fetal position with an ice pack and a heating pad.

Sex and orgasms are like fire. It hurts to pee. I get headaches. This heavy feeling is so intense, pulsating cramps from my vulva to my rectum, pain in my upper thighs to lower back.... it takes me back to being pregnant, only there is no light at the end of the tunnel here. I don’t get to deliver a beautiful baby and say the pain and suffering is worth it!

I recently saw a chronic pelvic pain specialist and although she doesn’t treat PCs she does treat the other issues, an angry tight pelvic floor (kegels are NOT for everyone), tight psoas muscles and hip flexors, dismenorrhea... she has recommended continued pelvic physical therapy, Topamax, and Botox in my pelvic floor.

Has anyone used any of the above?

I see the vascular surgeon for imaging in two weeks for the pcs issues...

I started Topamax 5 days ago and am experiencing the weird metallic taste issues...

Any advice/input is appreciated!

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