Isn't there anything hopeful out there for PN or PNE?

[wannagetbetter]

What is out there that is truly hopeful? Does anyone think stem cells can heal PN or actual pudendal nerve entrapment? Isn't there something?

Does shockwave therapy only work for a known acute injury?

I have had PN (actually told PNE at one point based on PNMLT but then was told it's not totally reliable) for almost 30 years but a few years ago most of the pain decreased to a very, very tolerable level. 3 months ago following a UTI and then stretching but had also been doing a more vigorous exercise program with the elliptical and hiking my pain shot up to levels of 8 or 9 most of the time, the worst pain I've been in with PN or PNE. My vulva constantly burns on the left side. Every time I urinate it is intensely painful, again on the left side. I'm on lots of neurontin and valium/baclofen suppositories (10mg of each) and it helps but is still very painful and I cannot sit more than 15 minutes. My pelvic pain doctor could not find any tight muscles.

I also want to know if stretch injuries to pudendal nerves can heal? (I am wondering if the piriformis stretches caused injury and if it can heal over time)

[April]

Wanna,

That sounds awful. I’m so sorry. I can’t imagine dealing with this for 30 years. I don’t know about new developments with pn and pne treatment, but I can tell you what seems to be working for me (I also had intense burning in my vulva, it also burned when I urinated, and I also don't think I had tense pelvic floor muscles): (1) I move as little as possible, so absolutely no exercise, no stretching, and no steps (I take elevators); (2) I do not do anything that causes immediate pain (e.g., no intercourse), and (3) I was on 100 mg of amitriptyline. My pain is much lower now, and I only use ice occasionally (instead of constantly). And, because of the improvement, I just began to scale back on the amitriptyline (now 87.5 mg—I cut one of the 25 mg pills in half to create that dose). I’m hoping that at least some of my improvement is due to the nerve healing and not just the medication. I won't know for sure, though, until I more fully scale back on the meds. But, even before I started the medicine I did have improvement when I stopped exercising and stopped pt.

April

[nyt]

There are stretches in Amy Stein's book I can't do because they just stretch everything to much and aggravates everything. Give everything a break and rest. Have the doctors talked about adding Lyrica or Elavil to your Neuroton? You might want to try some ice and see if that helps at all. I am just so sorry to hear that everything has really flared up on you. It is always such a nightmare when that happens and I know from personal experience that things settle down to baseline but takes time.

[Violet M]

Wanna,

I had to stop exercising for awhile too. I don't know if that will fix the problem for you but it seems like it would be worth a try. Nerves can heal over time and some people get better just by changing their lifestyle.

I haven't heard of anything promising from stem cell injections. Regarding shockwave therapy...my understanding is that it is for more than just injury. It may also deal with possible entrapments but you can contact Dr. Andrew to confirm that.

Surgery success statistics depend on who you talk to. If you read the literature the doctors have published a 65-85% success rate with success being a 50% improvement in pain. If you read some posts on the forum it sounds bleak but anecdotal stats from a forum are not a scientific study. I had great success from surgery and I know others who have but not everyone does.

I agree with April that ice can be a lifesaver. Topical creams such as 20 % benzocaine might help too.

Violet

Violet

[stephanies]

Wanna,

I have been researching stem cell therapy for a few months now. Here is the abstract of an article I found recently:

Pain Med. 2015 Feb 12. doi: 10.1111/pme.12693. [Epub ahead of print]
Pudendal Neuralgia: A New Option for Treatment? Preliminary Results on Feasibility and Efficacy.
Venturi M1, Boccasanta P, Lombardi B, Brambilla M, Contessini Avesani E, Vergani C.
Author information
Abstract
OBJECTIVE:

The aim of this prospective study was to investigate the feasibility and report the short-term results of a new procedure for treatment of pudendal neuralgia, consisting of transperineal injections of autologous adipose tissue with stem cells along the Alcock's canal.
METHODS:

Fifteen women with pudendal neuralgia not responsive to 3-months medical therapy were examined clinically, with VAS score, validated SF-36 questionnaire, and pudendal nerve motor terminal latency (PNMTL). These patients were submitted to pudendal nerve lipofilling. Clinical examinations with VAS, SF36, and PNTML were scheduled during 12 months follow-up, with the incidence of pain recurrence (VAS > 5) as primary outcome measure. Appropriate tests were used for statistics.
RESULTS:

All patients had preoperative increase of pudendal nerve latencies. Twelve patients completed the follow-up protocol. There was no mortality, and no complications. Two patients had no pain improvement and continued to use analgesic drugs. At 12 months VAS significantly improved (3.2 ± 0.6 vs 8.1 ± 0.9, P < 0.001), as well SF36 (75.5 ± 4.1 vs 85.0 ± 4.5 preoperative, P < 0.01), while PNTML showed a nonsignificant trend to a better nerve conduction (2.64 ± 0.04 vs 2.75 ± 0.03 preoperative, P = 0.06).
CONCLUSIONS:

The new technique seems to be easy, with low risk of complications, and with significant improvement of symptoms in the short period. A larger study with appropriate controls and longer follow-up is now needed to assess its real effectiveness.

© Wiley Periodicals, Inc.

Now, the procedure didn't help everyone (2/15 got no relief) and for those who had pain relief, there is no data on how long it will last, but at least the doctors are continuing to work on peripheral nerves. My personal pain doctor said she thinks maybe in the next 5-10 years there will be something available for us to try.

Stephanies

[April]

Stephanies,
Thanks so much for posting this. This is such good news.
April

[wannagetbetter]

Stephanie - I second April's thanks. I can only hope it will be 5 years and not 10.

May I ask who your pain doctor is and what pain protocol you are on? Your pain doctor seems better versed in pudendal issues than most.

[cookiemonster]

If you read the literature the doctors have published a 65-85% success rate with success being a 50% improvement in pain. If you read some posts on the forum it sounds bleak but anecdotal stats from a forum are not a scientific study. I had great success from surgery and I know others who have but not everyone does.

Yes, the PNE surgery success is amazing. Let's have complete faith in the PNE surgeons and ignore those bitter naysayers.