Health Organization for Pudendal Education

I had botox injections into my left levator ani and obturator internus muscles 3 months ago. I am still worse since this treatment. I've been thinking about it a lot and have a few ideas/thoughts as to why I might be worse, but it doesn't make a lot of sense. So I was hoping to get some input from you all. Why do you think botox would make someone worse? It is a drug that supposedly has a temporary effect so why the drastic change in pain levels (and even on the side that wasn't botoxed)?!

I keep hoping it will eventually go away and I will be at the pain level I was before the injections, but it doesn't seem to be happening. I've had to start new meds even since the botox and have become much more debilitated.

Oh, I think about you every day and was hoping to hear better news. Did you have an appt w/Loretta down in AZ? What about calling her to get her opinion? I don't know if you've tried Hibner's office but they are very lackadaisical about returning calls.

I know you have a very tough decision that lies ahead of you. May you find peace in whatever decision you make.

My best wishes and thoughts are with you
cari

Hi Faith , really sorry to hear about this. . .the only thing I can say is that I had botox, but into my piriformis muscle so a different case but as I only had it done on one side I had the better side as a 'control' (both sides are affected just got botox in worst) Although the effect of the botox did start to lessen after around 3 months I could still feel that it was being effective to a degree up to 5 months later.I hope with the bad effects wear off for you soon ((((hugs))))
To try and answer your question (struggling here tho') is it because the other muscles are having to work overtime to compensate for these ones being relaxed and non functional. Maybe that's where your entrapment(s) are and not in the exact vicinity on the botoxed ones. I haven't looked at a pelvic pic to refresh my memory where they are, will later, doubt it will help much but I'll give it a go
more (((hugs)))
Helen

Faith, I'm sorry you are still feeling worse from the Botox procedure. I've known several people who have gotten worse from Botox but I don't have an explanation for it. I also know several people who seem to have had bad reactions to steroid nerve blocks. No idea why other than that as with any medication maybe some people have bad side effects due to their genetic make-up. Another theory is that the injections themselves (with nerve blocks or Botox) can cause additional scar tissue to form or they can get too close to a nerve and cause nerve damage. Whatever has caused your additional pain, I hope it will wear off soon and you can at least get back to your pre-Botox levels.

Hugs,

Violet M

Thanks for your kind words and concern.

carolynm wrote: Did you have an appt w/Loretta down in AZ? What about calling her to get her opinion?

Yes, I saw Loretta and have emailed with her about my worsening and new symptoms. There wasn't a lot she could really offer, but she does think it is likely muscle compensation from the botox. It's just strange because I also have a lot of burning too which seems more like nerve pain. But it seems to be more outside the distribution of the PN (like around the ischial tuberosities).

The botox has also worsened my SI pain which I think is interesting. I guess my pelvic floor was helping to stabilize my pelvis so now that it is "paralyzed' my quadratus lumborum and hamstrings are having to work harder. Interestinly my piriformis isn't horrible (never really have had sciatic issues). Several docs/PT's have attributed my PN symptoms to SIJD, but it seems to me if my pelvic floor tightness/pain was caused from muscle spasms due to SIJD then the botox would have helped. So I feel pretty confident my pain is nerve related the question is: is it PN only or PN + another nerve or just another nerve?

Faith,

I'm sorry to hear about your worsened pain after Botox. How are you doing? Do Dr. Hibner's diazepam/baclofen vaginal suppositories help at all?

Susibee,

I am getting by. I mostly stay at home other than sometimes going to church for 1 hour and the occasional short errand/function. I can't tolerate sitting much at all, even on a cushion. It's been almost 4 months since the botox now.

No, I haven't gotten much relief with the valium/baclofen suppositories. I actually started taking baclofen orally and got a little relief (as in it would sometimes bring my pain down from an 8 to a 6), but I seemed to build up tolerance to it quickly and increasing the dose has caused tachycardia (fast heart rate) so I am weaning off it now.