Health Organization for Pudendal Education

Hi everybody,

I have a bit of a dilemma.

I have finally decided enough is enough with the NHS and i am in the process of trying to apply for PCT funding for treatment somewhere else in Europe.

I spoke to my local MP today and arranged a meeting with her. I explained my long history with all the NHS doctors and the problems i have and am still encountering. She was extremely empathetic about my pain and history and agreed to help me try to get PCT funding. My GP is also backing me up.

They have asked me to bring all the information with me including my choice of Doctor??

My dilemma is choosing which doctor to choose. I can find three good choices:

1) Prof Robert, Nantes

2) Dr Bautrant, Aix En Provence

3) Dr Beco, Belgium.

I am swaying to France to be honest. I know both Prof Robert and Dr Bautrant use different techniques in surgery. I think i am correct in saying Prof Robert uses the TG technique which involves cutting the Ligaments, however, Dr Bautrant uses a revised technique which spares these Ligaments.

To be honest i have concerns with both approaches for different reasons.

My concerns with Prof Roberts TG approach, cutting the Ligaments is that i already have a lot of pelvic pain and am worried that cutting these Ligaments may cause more pelvic instability and pain.

My concerns with Dr Bautrants approach is that i am worried that this option has restricted access and observation and my Ligaments may in fact be causing the entrapment.

I am really plucking at straws here, because i do not have enough knowledge on either of thses approaches. This is a huge and important decision and i would really appreciate any feedback and advice.

I can totally understand your dilemma. I think once you have researched this problem other difficulties present themselves as it is so complex.
As for those pesky ligaments. . . . . Dr Dellon does answer the question in some depth in his book http://dellon.com/ps/chapter12.pdf from page 357
You may have read it. He is coming from the angle that severing the ligament isn't a problem but he does explain why. It's a tough one and only you can make that call. I think that if you are not hypermobile (but how hyper is HYPER????) things should be ok,judging from Dr Dellons information and research.
I am fairly hypermobile (used to be able to do a back bend from standing and go into a 'crab' position (my party trick) I would fall on my head now trying it ) so it is a question that does need research. Maybe a physio session could establish SI joint issues and degree of hypermobility unless you already know. In my case I have had my SI joint problems 'physioed away'. .. . not! (been told I have a rotated and lifted pelvis with one joint is 'stuck' and has no bounce) but while the physio doesn't hurt nothing improves either and I still have the same problems when I go to see another recommended physio. My thoughts would be that surgery may be needed before my SI joint problems can be addressed.
You need to bear in mind your possible piriformis problems too. If you do have nerve compression problems at that level (as I do) who can help with that ? I have heard (second hand) that Prof Robert takes the piriformis into account as does Dr Beco. . . . but that would need checking out properly. It depends on if the P muscle is responding too PN problems OR it it could be the culprit, doesn't it. I would e mail/snail mail the doctors you are considering with your symptoms and see what response you get.
I would find out what the process is when going to France (whichever place) There has GOT to be an initial clinical evaluation and at least with Prof Robert you are seeing the 'master', BUT I have seen many presentations by Dr Beco and have been impressed and of course Violet had success with Dr Bautrant. AAAARGH! I'm not helping am I. . . . maybe some people who have actually had the surgery will comment.

Hi Helen,

Good old faithful Helen always replies and does her best to help. Thank you. I was beginning to wonder if i had done something wrong I have posted two posts in the last week and had no replies??

I am genuinely confused about this debate. I am sure that Dr Robert is a very clever man and have a lot of respect for what he does, but i am still worried about the more invasive approach. I have had 10 years of horrific pelvic pain and am just worried such invasive surgery will cause me problems. However, i know that the other approach has its limitations.

you are right Helen i am wondering if my Piriformis Muscle could be a culprit. It could be my back injury causing problems in my pelvis and with my Piriformis Muscle?

I also wanted to ask does Dr Robert or any of the doctors in Nantes have any experience with lumber spine injury and its affects on the pelvic floor, or are they only focused on Pudendal Nerve.

Oh and sorry Helen,

When you say surgery on you S1 joint what surgery do you mean. I am still convinced i need surgery on my L5/S1 joint which always seem to start all my pains. I get a deep nerve pain from this sacral joint area which seems to radiate into my pelvic floor. But the surgeon just wont have it??

I had a 'large prolapse at S1/L5' and was later told that it was the largest my surgeon had encountered meaning that after the microdiscectomy there was nothing much left of the disc as he cut the protruding bit off. What a fantastic relief that was .
I'd had a 'back problem' for 3 years and moving house 3 times in quick succession and the renovation of this house (STILL NOT FINISHED!) that finally did me in and an op was the only way forward. That was in March 03 but I was fine after that a until a fall in 08 gave me the current pelvic problems. The differences being that there will be a huge queue of neurosurgeons who can usually help you with spinal problems and almost no one with pelvic. I'm sorry that you haven't found help with either.
This could mean that the spinal component of your problem isn't as problematic as your pelvic? But of course, getting someone experienced enough in pelvic problems to identify that problem is difficult to say the least.
Let us know what you decide to do.
Maybe this thread should be moved out of the Welcome Centre as they don't show up under 'active topics' and possibly don't get so many views. Maybe you should post it again stratts?

Edited as I maybe misread question (DUH!) I would consider piriformis surgery as in pelvic nerve decompression but if I still had sacroilliac joint (SI) joint issues I would not consider surgery for that. Sorry to mislead.

Edited again. . . .and less of the 'old'
Take care,
Helen

Hi Stratts,

I went back and read your original post -- was just curious if you were ever able to get that evaluation by a PT and if so did they say you are hypermobile?

Just a little brainstorming here --- I haven't heard of too many guys who got better after Bautrant's surgery. Not saying that it doesn't happen -- I just haven't heard of them. The people I know who got better were women. When I made the decision to have surgery from Bautrant due to pelvic hypermobility I figured I could always go back and have the TG approach later if it turned out the ST ligament needed to be cut to free the nerve. Thankfully, I did not have to go for a 2nd surgery though but just brought that up because the TIR surgery does not deal with nerves entrapped within the ST ligament. I don't know what would be best for you. Just throwing out a little information and hopefully it won't confuse you even further.

Violet

Hi violet,

Thanks for your reply.

I have decided to go straight to prof Robert now. I spoke to July on pelvic pain.org and she informed me that I cannot get pct funding for dr bout rants. At least that is what I made out from what she said.

I am going to try and push to see Prof Robert now. He has a wealth of experience and think he is my best shot at an accurate diagnosis.

When you say hyper mobile what do you mean. No Physio has said that to me. Only a massage therapist said my buttock muscles were the tightest he had ever seen!! I did get a little relief with muscle pain when I had regular massages, however, it costs 30 pound per session. Now I have lost my job due to horrific pain I cannot afford to go and the Physios on the NHS are absolutely useless and will not even touch you. They get paid for nothing. the good Physios are not few and far between and not local to me and are private. bit of a vicious circle!!

Stratts.

Well done you!
I definitely think that you are making the right choice here, as you say the NHS are absolutely useless and the cost of private here is far more and then without the expertise offered in France. It will be interesting to follow how things go with you, how long it takes etc. Please keep us informed.
Helen

Good luck Stratts. You may be able to schedule an evaluation by a PT while you are in France seeing Prof. Robert. Keep us posted.

Thank you Helen and violet for your replies and support.

Of course I will keep you updated. I know it is not going to be a quick fix. I have prepared myself mentally for this. But you have got to keep pushing.