Health Organization for Pudendal Education

Hello,

Last year I was diagnosed Pudendal Neuropathy + pririformis syndrome. I've tried acupuncture, osteopathic treatments, Lyrica+Amyltriptiline, supplements for the reconstruction of the nerve apparently damaged by excessive muscle contraction of the pelvis and sorrounding tissues.

Still, after 1 year I cannot seat, as my main pain is on the coccyx. No burning pain. Better overall, but far from the real life.

I'm currently under Lyrica (pregabalin)100mg but stopping after 7 months because I've had some hallucinations +Amiltryptiline(15drops), as well as muscle release technics with an osteopath and physioterapist specialised in the pelvic area (since November).

I'd like to know if there is someone in a similar situation, though I know everyone is totally different from one another. I'd like to know which treaments are used abroad (I live in Italy), as I gather this forum is attended by many people all over the world. There may be new drugs/treaments that are not known in Italy/Europe. Basically I'd like to compare and share experiences.

Thank you!

Georgina

Hi Georgina, welcome
I have the same complaint, PN with piriformis pain. Mine is due to a fall and subsequent haematoma in my p muscle so my pelvic nerves (pudendal,post femoral cutaneous and clunial) are trapped at piriformis level. However a good many more people here have the PN problem and piriformis syndrome as a secondary complaint.
I have had botox into my piriformis (well steroid too but that didn't have much effect) it made the muscle SO much less painful but didn't do anything much for the nerve pain as the scar tissue doesn't respond to botox.
There is an absolute ton of information and different treatments available on the home page btw but I'm sure others will be along to say hi in the mean time.
It may be a good idea to try an antidepressant with the amtryp, the combo can work well although it is experimental as you have found with the lyrica.
Glad you found us Have you tried physiotherapy at all?
Take care,
Helen

Georgina, some people try ganglion impar blocks for coccyx pain. If the block is successful then sometimes a ganglion impar block with phenol provides more permanent relief but may also need to be repeated at a later date. We had someone post on success with this treatment awhile back but they are no longer active on the forum.

If your pain is not burning and is mainly in the coccyx area, I'm curious how you came to be diagnosed with pudendal neuropathy. Do you have pain in the pudendal nerve distribution area also?

Violet

Hi Violet and Helenlegs, thanks very much for your answers.

Botox into the piriformis is new to me. Doctors told about injections but in the gluteus area, near the nerve but no piriformis...and they also reckon my case doesn't require this yet. That's certainly something I need to ask about.

Violet, you confirm my doubts about my diagnosis, as I've never had the awful burning pain as everyone else complains. However, I've had the routine exams to diagnose the neuropathy. I need to say that I was diagnosed only after 4 months from the outbreak of the pain, so they explained to me that the damage was limited.

I'm taking pregabalin (Lyrica) with Amytrip. and they helped to reduce the pain but still if I sit normally weighing on my coccyx it hurts. In the piriformis I feel sometimes electric shock-like pain, sometimes starting in the sacrum area where the nerve originates. During the winter (low temperatures effects me a lot) I developed also some pains in the groin area, though it all seems due to contracted muscles.

Yes, I'm doing physiotherapy with a therapist and osteopath specialised in the pelvic area. They are giving some good results and when I have some trigger points released (from the outside only, no Stanford protocol) even my coccyx doesn't hurt anymore, that's why I think the nerve is "simply" stressed by tight muscles.

Has any of you tried Baclofen? I was prescribed this medicine because another specialist thought my problem was mainly muscular and not really the nerve itself.

I'm 36 and my life, as many of yours I imagine, has changed a lot since all this came out. Did any of you recover completely? I've heard very few cases where people recovered completely and left medicines, and I also read on this comprehensive website (the information are so well explained!compliments!!!) that we'll need to take care of this nerve for the rest of our life. Fair enough, but can you sit normally?? Do you still go to work? Sit in a restaurat??On a train?

I've read about a newly released cream with amytrip and ketamine (Indian). Have you tried it?
Thanks again!

Georgina

Heavens it's all so complex isn't it!
I think a good recovery has a lot to do with how the problem started, i.e. if there is no history of trauma onset of neuro type pain, conservative treatments can have a good effect, although it can take some time. As you have seen improvements with the physio you have described I hope that you will see further improvements too Georgina
Where did they target the acupuncture? I have had that too, into my piriformis, followed by acupuncture with feathering , which is basically just pulsing the needle up and down at intervals. I must say, this feathering hurt LOTS ! I had to bite my arm and pull my hair to stop crying out. I gave up after 2 sessions. My physio had no idea what she was putting me thru but at that stage (2 years down the line) I was so pleased to have a sensible diagnosis and targeted treatment I would try anything.
Unfortunately it didn't have any good effect but I think the telling thing is how much any needle (dry needling, acupuncture injection) into that muscle hurts (and I am not a softy). . . . .. Thru the skin and glute, fine as soon a sit hits the p muscle WOAH!
It's the same with deep massage too. Have you found anything similar Georgina?
I know my physio had another person with piriformis syndrome, more from sitting as he was a lorry driver and not that active when not at work. She could feel the small pea like muscle knots and a fair few of them I think, she said it felt gritty. His treatment, mainly myofascial release, did work.
Like wise my nephew had piriformis syndrome for a while, his the opposite end of the problem, as he is very athletic and due to over action. He had sciatica with his too but normal piriformis stretches with a sport abstinence, worked for him. His was a much quicker fix too thankfully.
I don't work now, as you say not being able to sit without pain is very restricting, the sciatica takes care of standing and walking too.
I would say that one of the best things anyone can learn is to pace activities.You have to keep moving in my opinion, use it or lose it .
I recognise the groin pain you mentioned btw. I experience this once the piriformis pain builds, it effects my hips, right in the middle of them and then the groin joins in at this stage.
I can always find a way around going out for a meal however I sit on my better side with my leg sticking out. I have a tablet top up, something nice to drink and do seem to manage although very late nights require a lot of recuperation. Some things are just worth it tho' aren't they!
Haven't tried baclofen, although I have heard it mentioned. I know some people use Diazepam (Valium) and say it helps.
What is the next stage for you? or are you happy enough with your physiotherapy progress?
Take care,
Helen

Georgina wrote:Has any of you tried Baclofen? I was prescribed this medicine because another specialist thought my problem was mainly muscular and not really the nerve itself.

I'm 36 and my life, as many of yours I imagine, has changed a lot since all this came out. Did any of you recover completely? I've heard very few cases where people recovered completely and left medicines, and I also read on this comprehensive website (the information are so well explained!compliments!!!) that we'll need to take care of this nerve for the rest of our life. Fair enough, but can you sit normally?? Do you still go to work? Sit in a restaurat??On a train?

Georgina, during the year after surgery I tried Baclofen but it didn't help much and made me feel weak. We are all different though so you won't really know until you try it.

I have returned to work and I can sit normally for hours but it's best if I can get up and walk around a bit off and on throughout the day. Today I sat almost all day for a training. I do not take medications for PN anymore. Some of my symptoms I'm essentially cured from and I don't think about pain much anymore. There are certain exercises that make me feel like the pain might be creeping back in so I avoid them but I can walk several miles without a problem.

Best,

Violet

Oral Baclofen made me want to sleep and did not help my pelvic spasms as much. Vaginal Baclofen (compounded suppositories) have helped. I have a lot of spasms and wish I would have tried this sooner. I am actually about to try a Baclofen/Valium mix suppository. I hope the medication provides you some relief.

[quote="helenlegs 11"]

I think a good recovery has a lot to do with how the problem started

Hi Helen, it started with sitting office hours on a very rigid chair. Started off with a very mild sacrum/backache, but disappeared after a few weeks. Felt a bruise-like pain on my coccyx after intercourse but again nothing troublesome at all. The pain exploded at the beginning of 2012. I was told the body tried to adjust for 11 months and then it reached its limit. Moving house 3 months earlier (with consequent weight lifting)did not help either!

Where did they target the acupuncture? I have had that too, into my piriformis, followed by acupuncture with feathering

He targeted the coccyx area and the bladder/stomach meridians and it did work!!but with the time half of the effects faded away. Yes, we tried acupuncture with feathering, but no piriformis. Instead on the coccyx area. He tried a couple of time to tackle the piriformis directly but it made it worse or better like a spell but as the result was unpredictable we left it. I'm planning to return next month or so. I'm so sorry to read about all that pain, it certainly was not the right cure for your condition at that stage!and you have the sciatic nerve as well...good god, everyone is so different!

My physio/osteopath told me that the piriformis is "never alone" and in his opinion it needs to be treated as part of a wider system, without concentrating only on this muscle. So he adjusts and releases all the pelvis. The psoas muscles are the opposites of the piriformis and they need great attention in his view.

What is the next stage for you? or are you happy enough with your physiotherapy progress?

1-million dollar question well, the progess with the physio is building fairly good results and since last month they also remain rather then desappearing after a couple of days as before. I'm planning to try Baclofen and see if it helps, though I'm not convinced as weather to start another heavy drug with many side effect. I've just come off Lyrica after 7 months and don't really fancy all back again...but I'll give it a try! thanks!take care!

I have returned to work and I can sit normally for hours but it's best if I can get up and walk around a bit off and on throughout the day. Today I sat almost all day for a training. I do not take medications for PN anymore. Some of my symptoms I'm essentially cured from and I don't think about pain much anymore. There are certain exercises that make me feel like the pain might be creeping back in so I avoid them but I can walk several miles without a problem.

Reading you can sit for so many hours is like a mirage for me now! but I'm so happy for you!and hope I'll get to that point as well!As everyone I want my life back thanks for your reply, it really gives some hope!

What was your path to recovery in brief if you don't mind?
best

Georgina

Meliora wrote:Oral Baclofen made me want to sleep and did not help my pelvic spasms as much. Vaginal Baclofen (compounded suppositories) have helped. I have a lot of spasms and wish I would have tried this sooner. I am actually about to try a Baclofen/Valium mix suppository. I hope the medication provides you some relief.

Thanks for your help!I need to find out if the suppositories are available in my country. Doctor only prescribed pills. Did you recovered completely? What other conditions did you have?

thank again,take care!
Georgina