Anyone permanently cured from nonsurgical treatment?

[NewMom]

Sorry for this newbie quesion, but I was just wondering if anyone has ever been "cured" permanently from non-surgical treatments (injections, PT, etc)? Most of what I've read seems that nerve blocks have never permanently cured anyone, is this correct?

So is surgery pretty much the only option of being permanently cured? And has anyone who had the surgery and been "cured" ever had the pain return, whether it be years later?

Thank you so much for any experiences you can share! Still scared...

[ezer]

The French forums have a few posters that are not cured but made better with nerve blocks. For unknown reasons it does not seem to happen here.
I personally do not know of anybody that has been cured by conservative measures. In some instances I did hear about cures from some people but several years later they admitted privately a failure.

[calluna]

Dr Greenslade in the UK has been quoted as saying that '70% of PN patients achieve long term relief with nerve blocks' - this is the thread.

I don't know whether you'd regard that as a cure? - I'd be pretty happy to be one of the 70%, I think! But I don't know any of the people involved.

(I'm seeing Dr Greenslade on Monday next week, it will be useful to have his opinion about it all, even if nothing else.)

[mirandamolly]

Dear Newmom,
I am very new to all this, and Im sure others know alot better, however this is some of what Ive read.Every case is different, and it also depends what mechanism is causing the problem.So every individual has an individual course.I did read somewhere that there are probably many cases of PN that comes and goes over the years, in other words it can get better, then maybe return or not.My partner also has PN, he just has an ache in his testicles on and off, he may not have it for years , then has it for a few days or months or weeks , then it goes away.I think it does depend whether there is entrapment or not, and what structural mechanism is causing the problem.I have read of a few people on these boards improved by physiotherapy, where a structural problem such as sacroiliac joint problems or unstable pelvis have been sorted out.At the very least,hopefully conservative measures can help so that one may be able to live with any remaining pain.I have read that some people even with self care like not sitting, in time can impove considerably.So there is hope.Im trying to take one step at a time and look no further.My plan is self help and physio for now.please never lose hope, you r not alone.Mirandamolly.

[pomegranate]

I know a handful of women who had good results with some combination of the following: nerve blocks, medication (cymbalta/lyrica, benzos), physical therapy, and lifestyle modifications (less sitting, no tight pants, stopped rigorous exercise). They work, have families, are involved with activities outside the home, etc. I don't think any of them would say they're cured, but they're all functioning and find joy in life. None of these women post on this particular forum.

Lauren

[HerMajesty]

I have seen nonsurgical cures although I did not have one myself. A subset of the PN population has pelvic joint dysfunction which can be corrected manually. I had pelvic joint dysfunction AND tarlov cysts on my S2 nerve roots, so while I was greatly improved by PT Manual Therapy work, I will still need surgery on the cysts. But, I started working with the PT Manual Therapist who greatly improved me and yes I have seen a few cures.
I did not mention this to you after reading your post because from your description of the childbirth problems and the kind of pain you are having, I really do not get the impression that you have PN secondary to joint dysfunction. I could be wrong but.the way you described the amount of soft tissue laceration in the pelvic area that had to heal, it just gave me the impression that as the wounds scarred and contracted with healing, and entrapped the nerve. I have not heard any credible accounts of a nerve entrapped in scar tissue being freed non-surgically. Dr. Weiss in San Francisco claims to be able to break up scar tissue manually but I doubt this for many reasons; if you search his name you will probably find a whole post by me criticizing that idea.
If you want to try to confirm the need for pudendal decompression surgery with diagnostics instead of just "going for it", you could get the 3T pelvic MRI (Dr. Hollis Potter in NY and I believe another radiologist in Phoenix are doing these to look for pudendal entrapments - check with Ali Pasha he knows who the Phoenix person is).

[Lernica]

If NewMom's PN was caused by the 5-hour pushing rather than the lacerations, could the nerve possibly recover on its own in a few months now that the pressure from pushing is no longer present?

[Celeste]

If NewMom's PN was caused by the 5-hour pushing rather than the lacerations, could the nerve possibly recover on its own in a few months now that the pressure from pushing is no longer present?

Not if there is a physical entrapment keeping it from doing the swelling it needs to do to recover. Her right side is painless, and it was just as pressed upon as the left side.

[Lernica]

If NewMom's PN was caused by the 5-hour pushing rather than the lacerations, could the nerve possibly recover on its own in a few months now that the pressure from pushing is no longer present?

Not if there is a physical entrapment keeping it from doing the swelling it needs to do to recover. Her right side is painless, and it was just as pressed upon as the left side.

And what would the physical entrapment be in her case? Scarring from the lacerations? Was that your case as well, Celeste?

[NewMom]

Thank you so much everyone for your posts. I guess I'm trying to figure out fact from fiction between what my (non-PN expert) doctors tell me and what I've read.

I'm not sure if my PN pain is from the 5 hours of pushing or the vaginal lacerations I had. My doctors haven't been much help in giving me answers. I guess I assumed the PN was from the lacerations b/c when one of my GYNs pushed upon the scar, I let out a scream and the pain feels pretty localized to that area of the vaginal wall. Although on a side-note, I 'm having so much more pain since last week when I let the head of the pelvic pain program do a vaginal nerve block on me - big mistake. Not only do I have increased vaginal pain, but new (dull) pain in the buttock area and upper thigh. I really hope that will resolve.

HerMajesty - what you said about the laceration scars contracting and entrapping the nerve does sound very plausible. More than anything any of the multiple docs I've been to have said to me. Most of them just said to me the pain is due to the traumatic childbirth - well duh! However I did speak to one OB/GYN today over the phone today (I was shocked since most docs would not take the time to call). Anyway, he thought that my nerve was damaged more from the compression from the interuterine balloon that was placed against my vaginal wall to stop the bleeding since my doc was unable to suture the lacerations after I delivered. My delivering doc said the lacerations weren't that deep so he didn't think I had an entrapped nerve, but does the depth of the lacerations matter? You can get PN from childbirth even w/o having tears or lacerations right?

Is the 3T MRI the only way to figure out exactly what's going on with the nerve before surgery? Could it tell if the PN is due to scarring? I'm just wondering since my original pain was pretty localized to the scar area on the left vaginal wall, would a vaginal surgery be better or is the TG surgery still the best option? If there is a doc in Phoenix who can do a 3T MRI that would be great since a plane ride to NYC sounds physically and financially painful to me right now! Thanks for the tip and I'll definitely ask Ali about that.

On another side-note I had my follow up appt with my pain doc and he thinks I just need to rest and give it more time to heal. But he couldn't tell me if that would take 6 months, 8 months, 12 months, etc. I've just been told so many times by different doctors to "just give it time" but none of them were able to diagnose my condition. They would say give it 2 more weeks and you'll be fine, then 4 more weeks, then 6 more weeks...after awhile I stopped believing them and knew something else was wrong. I really can't rest and do nothing indefinitely. I'm just afraid of letting too much time pass since I've read that you have a better prognosis the earlier you are treated. I know the surgery is not fun, but if that's what I need, I'd rather have it sooner and not do the wait and see method. I have an appt with Dr. Jordan in a couple of weeks so hopefully he can give me some answers.

Thank you again everyone!