Health Organization for Pudendal Education

I have notice that the sitting and bowel movements usualy are tricking the pain. Burning sensations I feel almost always. Only time when I feel better is when I have my period and when I dont sit at all, actually when I'm lieing on my bed. I counted that I have 5 types of pain.
Now I'm in touch with prof. Erdogru and I think that I will come to his hospital for tests cause the pain is getting worse and some times I can't stand it.

I wish you all all the best. I hope that noone else has to go through the things that we had too.

Well with your history of problems it may be a good idea to have an evaluation from someone who does know about the pelvic nerves Anita.
If you haven't already done so, take a look at the home pages here (in red above) Take a look at symptoms. The burning you describe could be from all sorts of problems which can usually be ruled in or out with tests and treatment. If the burning is from nerve pain is usually doesn't come with anything to actually see. Although this is not always the case. Insult and damage to tissue and accompanying nerve pain can sometimes result in a Reflex sympathetic dystrophy RSD, or complex regional pain syndrome CRPS. I think RSD explains it better as this problem can occur in a totally separate area to where any initial pain or injury was.
This can manifest as swollen and blotchy, mottled areas, usually limbs, but maybe that is what you had?? or that problems could have been something else alongside the PN. As you say the test has shown PN is very likely in your case, because of this test showed such a positive result.
If you do decide to go to see prof erdogru he may be able to give you the answers you are looking for. I would say that the stabbing pain you describe would have to be nerve related.
There has to be something said for his robotic laparoscopic surgery being less invasive. Although it wouldn't be the size of any scar that would make me decide one way or another, more that there should be less likelihood of scar tissue from this less invasive surgery. Hopefully post op scar tissue and any future problems will be less likely. He does seem to be a very nice, clever and considerate man.
Good luck whatever you decide upon.
take care,
Helen

I have goin the facebook grup and prof Erdogru is a member too. Only this month I think he had surgery on 3 patient and we are following their status on daily basis. For now all 3 patient are ok and feeling better.
But I have also read that inguinal-femoral hernia can cause some of the symptoms I have and can also presure the pudendal nerve and irritate it and damage it. not only pudendal nerve and other nerves in pelvic area. Also i have a frienda that had this femoral hernia and she told me what mess it made it in her pelvis. This types of hernia can't be seen with nacked eye only with ultrsaound performed from hernia specialist cause they can be very small and in women case hidden.

Thanks helen for your advices.

Love
Anita

Anita,
You are correct the faqs on the top of the forum pages we are on just talk about it. To get to the other faqs you need to "go the home page" that is in top banner of the forum pages above the faqs you already found. Then on the home page the faqs link is on the left under information and you can get back to the forum from other links on the left towards the bottom. Sorry for the confusion but it seems you are doing well with getting information from other sources. Good luck.
Janet

Anita, there was a surgeon in california who was doing unnecessary hernia surgeries on women. The surgeon had some disciplinary action against her. You can read the posts about Dr. Metzger -- do a search in the search bar at the top right.

Violet

Update... hello other Newbies and Helen, Calluna and Violet.

Sorry all, for not posting sooner but pregabalin and tramadol controlled my pain, and I got caught up on real life and housework

I believe I told you that I`d found a pelvic floor therapist who wasn`t too far away?
Her findings and diagnosis seemed as though we were on the `same page` of pudendal neuralgia, so I went off for my 1st acupuncture treatment.
She applied the needles in my gluteal muscle - and in fairness, it worked.
However, she became adamant that mine wasn`t a pudendal problem but muscle related instead.

I was pleased as muscle problems seemed easier to treat and cure, but I still asked her to treat the pudendal nerve in case.
It all went downhill after my 2nd visit though, I had acupuncture needles everywhere and thought that surely these must bring `some` pain relief?
She also worked on my lower back and from then on my
original pain came back with a vengeance- my 1st flare up in weeks - and carried on flaring with no relief from tramadol at all.
I`ve had to increase the pregabalin to 450 daily, ice and tramadol and I`m still not back to where I was before the acupuncture.

Meanwhile, my husband needed treatment on his back and saw our usual osteopath ( who`s very good at her job.)
I would have gone to her initially but before the pain relief kicked in, I wouldn`t have been able to bear her touching me.
I sent a list of my symptoms along with him, to ask,if she could help me?
A message came back that she could- and I had my 1st treatment with her yesterday.
After her examination and questions, she told me of another lady she`d treated, who had exactly the same symptoms and she`s worked on her successfully.

During the treatment- she `found` my pudendal nerve and commented that it may be the cause of my pain- up till now I hadn`t mentioned ` actual` pudendal neuralgia to her!!
I came home and slept for 2 hours but noticed that I didn`t need tramadol for the rest of the day.
I`m due to go back next Thursday.

My lovely GP has referred me back to urology- who I`ve already seen twice before with no result.
But because she`s so willing to help, I feel that I must go along with what she suggests- hopefully, she`s thinking that urology will refer me to womans health and the pelvic clinic at the hospital. She did think that I should be getting therapy on the NHS - so maybe urology is the route to it?
I`m to see them on the 16th Oct.

I hope you`re all getting some relief from pain, I`ll go off now and have a good read of the other threads.
Joy

Joy, that's scary when your symptoms get worse after trying a therapy. I hope the osteopath will be able to get you back on track and you will soon be back into life (including the housework! )

Violet

I am going down the urology route now too Joy, (or up the urology tract ) Perhaps I should have tackled it this way on from the beginning. Well ,will soon find out. . . . only 4 1/2 years later of course. (huff)
I hope you get some good results there too, although it seems that the osteopath can help in the mean time, fingers crossed.
At least you do know that unless the pain spirals the medication is having an effect. The fact that you have been able to manage for a spell is really good news once you are able to get things calmed down again.
Let us know how the osteo treatment works out over the longer term.
What was she doing to 'find' the nerve, and at which point did she locate it? Did you jump? I know I can 'find' mine ans sometimes it is 'exquisitely' tender and 'exquisitely' painful. Don't you think they should think of a different word! Exquisite?? well I could certainly think of a few .
take care,
Helen

Hello everyone
Good luck with your urology appt too Helen.
The last time urology saw me, I was in so much pain, that I couldn`t pin point exactly where it was- and I hadn`t heard about PN then either.
Now that my pain`s under control - I can draw them a diagram and show exactly where it hurts.

The osteopath was very gentle ( she`s usually a bone cruncher) and had asked me to lie on my right side with knees bent. She was massaging/working on my left gluteal /bum cheek and she found it under there. I flinched or more like hit the ceiling she commented that it was nasty, but she then left it alone and massaged all around it.
I`ve noticed that since seeing her, I`m getting less pain inside my girlie bits, which in itself is a big plus.

More has happened here: I`ve lost a lot of weight, so promised family I`d go back to the GP to get checked out.
Horror, the nice lady GP isn`t there anymore- so I`m back with the GP who told me the PN would`ve shown on a CT.
He`s sent me for blood tests, looking for cancer markers of my ovaries, and thyroid disfunction because of the weight loss.

I`m a bit nervous of perhaps ovarian cancer- but then its no good hiding my head. I`ll know on Friday when the results come back.
The same with the thyroid test.
I was in hospital 2 months ago and they checked for a thyroid disfunction and I`m also hoping a problem with my ovaries would`ve shown on the CT scan they did?
The GP also did a rectal exam - and oh my word that hurt when he hit the `inside` area of my left side pain.
I explained that BM`s kick start my pain almost every time- he said it would because even his examination hurt. Doh to me!
I`m skinny anyway and the `type` where weight falls off if I`m stressed, for instance- so for now I`m hoping this is the cause of my weight loss.
But a niggly voice keeps telling me that a common side effect of pregabalin is `weight gain!!`

Next the GP said that if the bloods come back as clear- he`s sending me for a coloscopy.
I suppose it`s best to get all these checks out of the way!
Onward and upward ( I hope)

Let me know how your urologly apptment goes Helen please? Is it soon?

take care all
Joy

Not long actually Joy, 23 rd Oct.
The problem being that I don't have any urological pain or problems, although I do have gynae neuro issues with pain and numbness and some BM problems (can't tell if I need to go, apart from pain build up) so my appointment is with a urogynaecologist.
TBH I just wanted a referral to his physio as she is a pelvic physiotherapist. Unfortunately she had not heard of piriformis related nerve problems (more pelvic floor I guess) so I'm not sure what to expect. I'm fairly sure that my total numbness in that area will get him wondering enough to think I am worthy of more treatment, investigation and ultimately some HELP!!.
Helen