Health Organization for Pudendal Education

Hi -

I'm pretty new to the forum. I just completed 6 weeks of Elmiron mix instillations. I also had a "test" pudendal nerve block with lidocaine in August that helped but for a very short time. I have really severe pelvic floor dysfunction as well as Interstitial Cystitis. Also had endo which eventually led to a hysterectomy.

I forgot to ask my urogyn exactly what muscles will be injected with Botox because I hadn't been approved as of my last meeting. I was just happy it was approved. Lucky to live near Hopkins where they can do this under conscious sedation in interventional radiology.

Questions:
1, I know for sure they will do the piriformis muscle but with rectal and urinary symptoms idk what else they will do. Anyone have feedback?
2. I know to expect some discomfort afterwards but what is it like and for how long. Sources on the web vary a lot.

Thanks,
Waterfall

Can't say for sure which muscles but possibly the obturator internus or some of the levator ani muscles.
Violet

Hi, Waterfall. I hope you do well with your Botox injections. Please keep us posted on how you're doing. I'm especially interested because I'm considering having Botox injections into the pelvic floor.

Emily B.

I'll let you know how it goes.

Thanks, Emily

Thanks Violet for your response. I a bit nervous but just praying this help otherwise I'm going to feel very disaapointed/upset I think.

Best,
waterfall

There are always high hopes when you try a new treatment. It's impossible not to have some hope that it will help relieve the incessant pain. How did it go for you, Waterfall?

Violet

Hi, I am "Ms X" in Dr. Noor Gajraj's article on Botox for the treatment of PNE. He was a professor at Southwestern Medical School in Dallas, where my son went to medical school. This was a participation in Peter Jennings of the national news "Pain Week, USA". I had surgery by Prof. Robert in Nantes, Fr, which was not successful. Dr. HIbner of Phoenix redid the surgery (the old way for both); I will be having PNE surgery this next year since Hibner can use a scope to reach the entrapped area in the Alcock Canal. The way I survived was the botox injections which calmed down the spasms, usually every 2-3 months apart. I do not have control of the bladder and have diarrhea without it. I go from constipation to diarrhea when I go without it. Simenthecone (OTC) and Bentyl help deal with the intestinal problems. Hopkins is an excellent place to get help and you are lucky to be near it. Very lucky. Plane tickets and motel rooms are expenisive at best. Botox makes it bearable until your doctor decides what to do in your case. I still sit on a pillow and cannot stand hard surfaces at all. Walking is excellent treatment as is Physical Therapy - Womens in keeping you together. The PT I have has a masters in womens physical therapy - she works in the vaginal canal and the rectum to stretch it out some. Leah Tobey trained under Loretta, Dr. HIbner's physical therapist. Recommend both. It works so you do not have to have the piles of medication which will bind up the intestines. Miralax and flax seed (OTC) will help you control intestine issues which affect us. I buy the MIralax and simenthecone at Dollar General under their label, and Flax seed is available at a grocery store. I am on Tylenol for pain control, no blood thinners allowed. I sleep on a beanie bag (heated in the microwave for two minutes) to relax the muscles. I wish you the best in dealing with these symptoms.

Hi Carlie,

I am glad you got so much relief from the Botox. It sounds like you are about to have PN surgery for the 3rd time? If so, I wish you a successful surgery and a speedy recovery.

Stephanies

Hi, I hope you do well with your Botox Injections

Did you have a good outcome with Dr. Hibner? He is at the top of my list if I feel that I need to pursue surgery?? Did the botox help--if so where was it injected? I had injections at the Cleveland Clinic in South Florida (in the anus) and it was not good!