Pelvic pain and Vulvodynia trigger by bowel movement..anyone else?

Posted by des856 @des856, Dec 8, 2022

I’ve suffered with pelvic pain, vaginal pain, bladder pain, hip flexor pain and rectal pain that is triggered by bowel movements for 4 years. I’ve seen 3 Pelvic floor PTs, 2 Urologists, 3 gynecologists, 1 Uro Gynecologist, physiatrist, gastroenterologist for colonoscopy, Interventional Radiologist for embolization with coils, neurologist for nerve testing, rectal surgeon to check hemorrhoids, acupuncturist, pain interventional specialist for hydro gastric plexus block, trigger point physiatrist and a functional nurse practitioner to keep Lyme in check and for ozone therapy.
- I have about 3 days a week with little to no pain but bowel movements trigger a widespread debilitating flare. Any other ideas? Thank you!!!

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lgumerman | @lgumerman | Dec 9, 2022

I have had pelvic pain for 19 years. Aggravated by bowel movements and sitting. I too have seen many people for this. The best results I have had are Botox injections in the rectum. The Botox relaxes the problematic muscles that are always contracted. The Botox lasts about 4 months but the relief for that time is worthwhile. Good luck with your search.

des856 | @des856 | Dec 9, 2022

In reply to @lgumerman "I have had pelvic pain for 19 years. Aggravated by bowel movements and sitting. I too..." + (show)

Thank you so much for the idea. That is something I haven’t tried. What type of doctor did Botox in rectum?

lgumerman | @lgumerman | Dec 9, 2022

The doctor is a gynecologist and is located in Phoenix. I am not sure what other doctors perform this very specialized surgery (they call it surgery even tho it is an injection). If u want more info on the Phoenix doctor let me know. Liz

des856 | @des856 | Dec 10, 2022

In reply to @lgumerman "The doctor is a gynecologist and is located in Phoenix. I am not sure what other..." + (show)

Yes please share the doctors name and practice. I’m in Chicago area so hopefully I can find someone here but I would consider traveling. Thank you.

sphillips1952 | @sphillips1952 | Dec 11, 2022

Never heard of that and been thru 1 1/2 rounds of 8wks
Pelvic Floor Therapy. Cdnt finish other for pain in vaginal and rectal pain( have a broken tailbone. Yuck..it’s been a lllllooonnng time since we’ve been intimate and my husband just wont cause that pain.

lgumerman | @lgumerman | Dec 11, 2022

In reply to @des856 "Yes please share the doctors name and practice. I’m in Chicago area so hopefully I can..." + (show)

Dignity Health takes insurance, but they only have one doctor performing the injections so it takes awhile to book.
https://locations.dignityhealth.org/dignity-health-medical-group-pelvic-pain-and-surgery-st-joseph%27s?utm_source=LocalSearch&utm_medium=Facility&utm_campaign=AZMedicalGroups&utm_term=PelvicPainandSurgery-St.Joseph%27s
I prefer Dr. Michael Hibner but last time I check he doesn’t bill insurance.
https://azccpp.com/michael-hibner/

sarsarson | @sarsarson | Dec 12, 2022

Have Tarlov Cysts or Perineural Cysts ever shown up on an MRI for you? Often doctors and radiologists reading our MRIs will say that these are incidental findings when they can actually become symptomatic and lead to the kind of symptoms you are talking about. There are only a few experts in this but they will do remote consults to help determine whether the cysts are responsible for your pain.

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