Botox for Chronic Pelvic Pain

Have we talked about botox here? I think it's been mentioned but I can't find the posts, so will start a new one.

I'm in a group with other women who have chronic pelvic pain. I've noticed recently there are a lot of posts there with more and more women being offered botox injections to treat various chronic pelvic pain conditions they're diagnosed with (often conditions that are given a label because the cause is unknown).

Botox is not covered by Medicare for gynecological conditions, so is enormously expensive. The vial of botox is a huge cost, plus it involves an anesthetist, the gynecologist/specialist to perform the procedure and a hospital stay. It also sounds like it's a procedure that has serious risks that need to be considered and it requires on-going treatments.

So it's basically an ongoing pain management option that's hugely expensive, highly profitable and becoming increasingly popular. I wonder if there are any studies on the long-term effects of having botox for pelvic pain?

Andi, from what little I have read and been told by people on IC forums in the US there are major issues apart from the financial ones.

1. You need to self Cath for at least 3 weeks post op
2. Some find they are still having issues and having to self cath months after the procedure.
3. Many are becoming bowel incontinent.

Not something I am willing to try.

I have registered on this forum as an advocate for my daughter (now almost 25) who has had this terrible condition since she was 14. We have done everything humanly possible to alleviate if not solve this. Her youth has been severely marred by this condition. The latest in a long line of treatments has been Botox to the pelvic floor in June 2017. Thankfully it is wearing off as it has caused her even more agony than before. Her "retention" was made much worse and it set her back. We are not blaming anyone as we were aware there were risks involved but it is not for her. We live in country NSW.

Best wishes to the team for your research.

Hi hopeful54, it sounds like botox has been a dreadful option for your daughter.

In your online research have you come across these patient stories? They are quite interesting to read:

http://www.chronicutiaustralia.com/blog-2/

http://bladder-help.com/category/ic-stories/