I'm trying to contact Eric Beautrant but no reply..

[Angeleyes370165]

I've been trying to contact Beutrant in France by email.... but as yet I've had no reply... can anyone help me?

[kalecolbe12]

Are you wanting to contact him to ask pudendal nerve decompression surgery?I'm surprised no one has answered you on this forum I just wanted to answer you and give you some support because it must be frustrating...I don't know if you want to tell me or not but I was wondering if you have ,pudental neuralgia or what condition you have just to compare notes and then I can tell you what I've done? No worries if not

[Angeleyes370165 in reply to kalecolbe12]

Thank you for you're reply.... I'm in Scotland and I would like to make an appointment to firstly get an appointment even for a diagnosis... I've been suffering from self diagnosed PN since a diagnostic laparoscopy 3 years ago... the pain clinics/doctors are as much help as a chocolate fire guard as I've been told this has been caused by a bad childhood to that of anxiety... I've sent 3 emails to Eric Beautrant and still haven't had an answer.... xx

[kalecolbe12 in reply to Angeleyes370165]

I'm in the USA Arizona but I'm from Newcastle in the UK so not too far from Scotland in fact my grandfather was from Scotland....so this is going to be a long email because I have a lot to say about this but yes I do believe the anxiety can start in childhood and the rest of Life can just add to it ...for me it was high anxiety stress levels and also butt clenching as my pelvic floor physical therapist calls it.....it can cause tight muscles which compress the nerves which create the pain even if you don't butt clench but you just have anxiety it relates all into your nerves and muscles all over your body which can land in your pelvic floor....there are several things you can do that can start calming down your nervous system which have found a really helped me....hopefully you've gotten to a pelvic floor physical therapist and if not you can start doing deep diaphramic breathing just when you think about it in the car on the bus sitting at a desk just start doing 15 minutes of deep breathing everyday which will start calming it down the other thing is go online to the curable app.... you don't have to buy it you can just see what the six lessons are and then they will ask you if you want to buy it but I just read the six lessons and that really helped... you can also get Amy Steine's book heal pelvic pain.... if that's where your pain is... Also I found the book a headache in the pelvis helpful to because all of these things have lessons in them even if all of it doesn't apply to you... then you can do some stretches of your whole body which will start to help too.... Also do some meditation if you have a chance which will also help..... I started having pelvic pain about 15 months ago out of nowhere except it wasn't out of nowhere of course I had been stressed out and butt clenching I think bicyclists and people who sit at desks extended time periods get it too but mine was mainly the inferior rectal nerve branch of the pudendal nerve was compressed from clenching my glute muscles from stress and I found muscle relaxers helped me ...some people use tricyclic antidepressants and some people use gabapentin, Lyrica etc.. I went to two colorectal doctors and my gynecologist...my gynecologist did give me some suppositories from a compounding pharmacy and they were valium and lidocaine and they helped...but you're right they haven't a clue and they're scared of the pelvic floor it's so full of muscles and nerves it freaks doctors out... It worries me that so many people are getting unnecessary procedures when it just takes a lot of time to get back on a more normal path... After all we are reversing years of stress and tension in our bodies which is going to take time.... I hope some of this has helped you.. oh by the way there's another thing called DCT by David McCoid and it's supposed to help people with pelvic pain also ...you might want to look it up...best wishes and stay in touch and let me know what happens

[Hidden in reply to kalecolbe12]

You are absolutely right about stress starting in childhood, butt clenching, abdominal clenching.

It's so hard to relax in this crazy world we live in.

I expect this type of disease is far more prolific in western developed countries like ours.

Pelvic Pain Explained by Stephanie Prendergast seems good to help understand the condition and role of physical therapy.

It's full of good accounts of people both male and female who've made a complete recovery without surgery.

Best wishes to all

[Ailiesonkerr in reply to kalecolbe12]

Hi, I read your reply to Angeleyes370165 (thank you Angeleyes) for your questions and explanation of what you are suffering from... I too am in Scotland and I think I have been diagnosed with Pudenal Neuralgia. I sit at a desk all day and like you say my symptoms totally came out of nowhere. It is such a bizarre thing albeit excrutiatingly painful. At first I thought I had vulvodynia as sometimes pain seems to start around the vulva etc., but eventually it is just a searing burning pain... like someone has poured burning water or like acid burning feeling on my buttock, it is only on my left side. I tried so many things to alleviate it, thought it was my underwear, bought massive size knickers, too tight jeans, bought bigger sizes. I wondered does this feel like either of your pain that you have suffered. It is only brought on by sitting down at my desk. My GP prescribed amitriptyline as said it was definitely nerve pain. This helped initially but then started to come back and I had to keep taking more of the tablets. I have private medical cover so what referred to a pain management specialist, who eventually said he thought it was pudenal nerve entrapment.... ( I was not convinced as he sounded a bit vague about it all). He eventually said I should have a pudenal nerve injection and this would confirm if this is what it was, but I chickened out of going through that.... read mixed stories/outcomes, so said I would just try and continue keeping on top of it with tablets..... but now last few days it has come back with a vengeance and I so unsure what to do now as I do sit down all day at work and by end of the day I am almost in tears...… So sorry to go on about it all to you girls, but wondered if you could say what your symptoms/story is as sometimes I think it must all be in my head and no-one really very sure how it has come on/exactly what it is. Thanks so much x

[kalecolbe12 in reply to Ailiesonkerr]

No it's not all in your head it's a real thing and if you read pudentalhope.com website you'll see... First thing you need to do is buy a cushion specifically for pelvic floor issues like a donut cushion or a thera foam cushion prime Amazon... It's memory foam gel and you must get up frequently at least once an hour and do pelvic floor drops where you just let everything go like you do when you go to the bathroom just feel everything melting down wards and that will release your pelvic floor a little bit...go see a pelvic floor physical therapist usually at a physical therapist office call them and see if they have a PT especially the pelvic floor ...I will write more to you tomorrow I have to go to bed now as I'm in the USA.... Stay in contact with me if you like

[Ailiesonkerr in reply to kalecolbe12]

Thank you, it really helps having someone to share/speak to about it. I will certainly see if I can go down the pelvic floor physical therapist route now and see how I get on. I will certainly keep in touch and let you know how I get on.... x

[lucyp in reply to Ailiesonkerr]

Bill Taylor, is a well recognised pelvic physio in Edinburgh, who works with on patients.

Lucy

[Angeleyes370165 in reply to lucyp]

Have you had any experience with being treated by Bill? Do you think pt makes a difference?

[lucyp in reply to Angeleyes370165]

No as I live near Bristol, but I have heard good reports.

Personally I did a long stint of physio and it made no difference, but again there are a lot of people who do benefit, we are all so different.

Lucy

[Hidden in reply to lucyp]

Have you been to see Dr Greenslade if you're in Bristol?

Korin

[lucyp in reply to Hidden]

Yes I have seen Dr Greenslade and Dr Baraoski in London. I found Dr Greenslade to be very much more empathetic and listening than the London team. I underwent various treatments in Bristol non of which gave me any lasting relief, but at least I thought they were trying. I was finally offered a spinal implant in Bristol but by then I had started doing the monster walk which has helped so much. I also had had decompression surgery in Istanbul, so it's been a long long journey.

Wish you well with whatever you decide.

Lucy

[kalecolbe12 in reply to lucyp]

I was afraid to try the monster walk but you say it really helped you I might try it also have you tried the DCT by David mccoid dynamic contraction training?I hear that's really helpful I wanted to know about the implant they were going to give you if you could give me more information about it I'd appreciate it... Alsoo would you mind telling me what your symptoms were and where they were and I wanted to know if you're feeling 100% yet or about 80% just trying to get more information..,thankyou

[lucyp in reply to kalecolbe12]

Hi,

No I have,nt really done David,s course. When I was seeing David he had developed another technique so this is the one I was following. I had whole bunch of exercises but realised quite quickly it was the lateral hip openers that was helping.

I had previously seen a specialist physio for over two years who always insisted it was my back that needed treatment. During one of my many sessions she identified the obdurator was in permanent spasm and agony, but for some reason never focuses on this to stretch.

The thing with David is he knows what this does to you. He suffered as a young man had three surgeries in the States and many other unsuccessful treatments. The monster walk worked for me and as things have improved my general fitness has improved which I think all helps in a holistic sense.

I don,t know what sort of implant I would have been offered as I declined at meeting the spinal implant team, so I never got that far. To the best of my knowledge America, and Belgium have become the real specialist in this area.

As far as previous symtoms, very grim, continuos rectal ,vaginal perineal pain, large amounts of painkillers, not really effective. Very depressed and suicidal what more can I say.

Now I manage on very low dose of analgesia, still unable to sit very well, but use a doughnut cushion which comes everywhere with me. Still careful about what I do, Don,t lift heavy loads, but live a full active life, with almost no pain unless aggregated.

Monster walk worked fantastically for me just wish it would for everybody.

Lucy

[Hidden in reply to kalecolbe12]

Thank you this is so helpful. I'd never heard of it, but think I may have it.

I can feel your suggestions would help soothe the area.

[Hidden in reply to Angeleyes370165]

Hello to you in Scotland

I'm in the north if England and self diagnosed also the theory being my pelvic floor is so tight it's compromising all the nerves and organs. I saw clinician in Bristol Dr Greenslade who trained under Nantes team. Not worth the visit or money although he did have same opinion re pelvic floor.

Before considering surgery, would it be worth trying to find a Pelvic Physio? That's what I'm doing at moment.

I am still considering surgery at some point and got very desperate about pain etc (only offered Gabapebtin to which reacted really badly)

Physios and osteopaths plus some chiropractors can help.

Please keep in touch re your progress.

Korin

[Konagirl60 in reply to Hidden]

Korin, I’m shocked that Dr. Grerenslade couldn’t help you.

What was his rationale?

[Hidden in reply to Konagirl60]

Dr Greenslade just said tight pelvic floor, I already knew that as it won't budge, and centralised pain syndrome focussed on pelvis. I'm having severe functional rectal/bowel symptoms as well as pain. I'm not imagining it, nor focused on it. Pass out with pain sometimes. This is following overzealous use of legmaster at the end of last year so I'm two months in.

[kalecolbe12 in reply to Hidden]

Yeah I believe I have some of the centralized pain syndrome now after having this rectal pudendal nerve irritation for over a year... I am definitely getting better days now after all my PT home treatment and meds but I'm doing the curable app to try to help the centralized pain syndrome

[Hidden in reply to kalecolbe12]

How are you finding the curable app?

[kalecolbe12 in reply to Hidden]

Very helpful along with everything else I do

[Konagirl60 in reply to Angeleyes370165]

The doctors are saying it’s all in your head. You’re being gaslighted. They don’t believe you.

Can you hire a registered nurse consultant to advocate for you? This might help.

I emailed the French doctor and got no response as well.

I had entrapment and I had to fight for my life. My doctors here in B.C. Canada gaslighted me as well. I got answers in Minnesota but my doctors ignored them.

A registered nurse consultant saved my life. By hiring and paying her, I finally got the life sparing decompression surgery I’d needed for 3.5 years!

[alansommer in reply to Konagirl60]

Who did your surgery? My sister needs it....

[Konagirl60 in reply to alansommer]

It was done in St. Paul, Minnesota by Dr. Stanley Antolak. He has retired.

I saw him for more nerve blocks last January, February and March of 2019.

He recommends Dr. Hibner in Phoenix, Arizona or Dr. Mark Conway in Nashua , New Hampshire if you live in North America.

In Europe he recommends Dr. Jacques Beco in Belgium or Dr. Bruno Roche in Geneva, Switzerland.

[alansommer in reply to Konagirl60]

Thank you so much!

[Konagirl60 in reply to alansommer]

You are so welcome.

Meds won’t control the pain of entrapment. Decompression surgery is a must and the sooner the better.

Good luck.

[Ailiesonkerr in reply to Konagirl60]

Hi can I ask I take it that the pudenal nerve blocks did not work/were not worth doing? Thanks I am unsure as to whether to have a pudenal nerve block.

[Konagirl60 in reply to Ailiesonkerr]

Usually they like to do three successive guided nerve blocks to prove the pudendal nerve is the culprit nerve. You can sit for a short while after a properly done nerve block using both anesthetic and steroid.

If three blocks don’t calm the nerve then decompression surgery is warranted especially if the rectum is burning and electrocuted. Most entrapments ( 77% ) are the rear pudendal nerve branch stuck between the sacrotuberous and sacrosphinous ligaments. The nerve branch gets stuck on the ligaments and fascia. It needs to be released by an expert.

I’d go for it,

[Ailiesonkerr in reply to Konagirl60]

Thank you so much for your reply. Has the decompression surgery cured you totally, you now have no pain?

[Konagirl60 in reply to Ailiesonkerr]

What was 20/10 off the map life threatening pain is now 7/10. I’m lucky to be alive.

[alansommer in reply to Konagirl60]

Is there any contraindication to this surgery? Something that could go wrong and make the person suffer more? What are the chances it will work?

[Konagirl60 in reply to alansommer]

Perhaps failure because surgery done too late OR scar tissue causing issues.

[alansommer in reply to Konagirl60]

Yes, but can a surgery like that lead to incontinency for life, or more pain forever, for example?

[Konagirl60 in reply to alansommer]

There’s always a risk with surgery. Decompression surgery is 70% successful if done in a timely fashion.

It’s damaging to a nerve to be pinched and not have signals flow freely. When and if medicines don’t help or side effects from them are intolerable, if PT makes it worse, chiropractic doesn’t help, resting doesn’t help what choice does a person have?

I almost died from sleep deprivation.

[Konagirl60 in reply to alansommer]

I’m no longer incontinent with stool. Zinc has helped.

[kalecolbe12 in reply to Konagirl60]

When you say most pudendal nerve entrapment are in that certain place are the symptoms usually rectal,vaginal urological or a mixture of all?

[kalecolbe12 in reply to Konagirl60]

Mine was burning and electrocuted feeling...that's such a good explanation for it...I ended up taking cyclobenzaprine for 3 months because my pt said my muscles were so tight that they had severely irritated my nerve so I had to get them relaxed to free up the nerve... I also diligently didn't my stretching and breathing and I'm one heck of a lot better a year later but I still want to go see a neurologist to see if my nerve is entrapped anywhere...however my pelvic floor physical therapist said that she's doesn't think I have entrapment but the neuralgia and I do get pain free weeks now...with a flare up here and there..

It takes a long time to get this better and then we just have to manage it I think

[tigerlily27]

HI, I live in France. Have never used dr beautrant. However, you may need to try calling. They can be terrible with paperwork and doctors usually only reply to emails like that if they already know you, but even then, it's usually only if you have been invited to do it. They can be quite difficult. But maybe give them a call. Hope you get through though and get some help for your condition. I have endometriosis and have had it all dealt with here in France. The hospital system is very good and things move much faster here compared to you uk. X X X

[airls8 in reply to tigerlily27]

Hi Isabella. Thank you for the information...sorry about this very vague question. I have read a bit about this particular hospital in France that helps with pelvic pain? Could you please provide any contact details. Do they treat all pelvic pain conditions? Thank you 💕

[tigerlily27 in reply to airls8]

Hi, I'm not sure if I can really help more than that. I haven't actually been treated in that particular hospital. My comment was only regarding the system in France in general. Hopefully someone else can help you a bit more on your question. I hope you manage to contact them and that you got some good treatment. X X

[kezj]

Hi

I have tried to message Dr Bautrant last year to let him know how I had been after he did my decompression surgery. My email kept bouncing back like they had put a firewall to stop virus emails. It kept asking me all this stuff in French and I give up. I have the address of his clinic and the name of the lady on reception who speaks English. Dr Bautrant spoke fantastic English and just one lady in the office spoke English. Maybe write him a letter with your email on and he will contact you. I have been where everyone on here has in some dark places over this and it's totally life changing and no one in your family or friends understand because they don't know how much it takes it out of you just to sit down.

I live in Manchester uk and I flew out to France because i had injections and physio and loads of tests here but everything just made me worse. The reason being my nerve was entrapped and no amount of injections or anything would have helped.

If you want the name and address just let me know, maybe try physio but someone who does internal physio. I still go once a month even after my operation. Dr Beautrant recommends that you still have internal physio to keep your muscles inside from seizing up.

If you need any advice feel free to message me.

Kez x

[airls8 in reply to kezj]

Hi Kezj. I would love some advice please. How do I get in contact with this team of pelvic pain specialists in France? Thank you 💗

[Milly49 in reply to kezj]

Could you please let me know how long it was after the procedure before you felt any improvement ?

[kezj in reply to Milly49]

Hi

It took at least 3 months but I wasn't in loads of pain. Just had to do quite a bit of physio as well.

Kez

[Milly49 in reply to kezj]

Thankyou for your reply

I have also had surgery two months ago and am still feeling quite sore and also some numbness at the moment I just wondered if this is normal I am about to start my Physio again and hope this will be ok

I understand full recovery can take some time if the procedure is successful and that the physio is needed to help with muscle spasms

Is this what you were told ?

[kalecolbe12 in reply to kezj]

Hi I was just wondering where your pain was before the decompression surgery,? did you have rectal ,vaginal urinary tract pain ? And had you tried everything like

[kezj in reply to kalecolbe12]

Mine was rectal and yes I tried everything. Ganglion block and 2 injections straight into the nerve Physio also.

Kez

[Ailiesonkerr in reply to kezj]

Hi I read your post with interest can I ask how the finally reached your diagnosis that the nerve was trapped? Did you have pudenal nerve block given? I am in Aberdeen and chickened out of having pudenal nerve block as the doc here had never done it before... thanks x

[kezj in reply to Ailiesonkerr]

Hi

I had a test in France called the doppler test and it was painless and it reads the blood flow that is passing through. I had injections and I was advised that after 2 injections there will be a major improvement, which I believed. Omg I think the pain after the injections i was in so much pain and I am not soft one bit. I think it really aggravated my condition. I would think carefully about injections especially if they haven't done it before. I know everyone is different and it might give you relief but I wish I had never had them

Kez x

[kalecolbe12 in reply to kezj]

Can I ask you how they found out that your nerve was compressed and not just irritated? Also when you go once a month for the pelvic PT do they do internal release and external release or what do they do exactly to stop the muscles from seizing up.....I have been going to pelvic floor physical therapy for about 8 months once a week and along with meds that I have to break the pain cycle with 3 months and then stretches and breathing exercises I have reduced my pain significantly however I still have a thought in the back of my mind that I need to get checked to see if the nerve is entrapped but my PT said no she thinks it's just irritated and it takes years to get it in that shape and it takes a long time to get out of it or to manage it... She said if it was entrapped nothing would work and that I would be in pain all the time until I got it decompressed....sometimes I have no pain for a week or two and I'll have a flare-up but I still have to make it work and go earn a living..ugh!! Pelvic floor is a mystery to many specialist I found out also

[Hidden]

I am a patient of Dr. Bautrant. I last saw him one month ago. The booking system has recently changed and is now done online through a dedicated website called Doctolib. I just checked his page (doctolib.fr/gynecologue-obs... but no dates are currently available. You may have better luck calling his secretary on 00+334 42 37 38 07. If you're really lucky, the one who speaks English will answer ! Dr Bautrant performed decompression surgery on me in October 2018. It didn't work for me, possibly because I was under enormous stress at the time. I have now been diagnosed with Central Sensitization Syndrome for which Dr. Bautrant has prescribed neurostimulation and hypnotherapy. He seemed very tired when I last saw him, not at all his usual self, which I put down to the fact that his surgery recently moved to the other side of the road. The usual waiting time for an appointment is 4-5 months so you may want to book a holiday in Provence at the same time. Good luck !

[kalecolbe12 in reply to Hidden]

I've just learned about Central sensitization and I'm starting to understand it... Can you tell me what he said about the neurostim and the hypnotherapy and how well they both work? I keep thinking that there must be so many people with these issues and that so few people really know about them it's just awful

[Hidden in reply to kalecolbe12]

I completely agree with you, central sensitization is most certainly under-diagnosed among pelvic pain sufferers...there are certainly too many people out there wondering why they are not getting better in spite of all their treatments and all their efforts. You may be interested to know that a central sensitization questionnaire was developed a few years back. You can check it out here: css.dewarlorx.com/central-s...

To answer your questions, I haven’t used the neurostimulator yet because I am still to see the nurse who will show me how to use it. Dr Bautrant didn’t explain anything, but I have read (in a French book about pain) that the neurostimulator stimulates (oh, really?) the activity of the big nerve fibres (responsible for carrying light, non-painful sensations) in order to diminish that of the small ones (responsible for carrying the pain messages). This is, I am sure, very simplified. I will keep you (all) posted when I put this neat little theory to the test.

The hypnotist I saw works with Dr Bautrant at his pelvic pain clinic in Aix-en-Provence. She told me that hypnosis, in a context of chronic pain, helps control the intensity of the pain, helps deal with emotions regarding the pain, and helps find the motivation to carry on in spite of it. After half a dozen sessions, sometimes a bit more, you should be able to start performing self-hypnosis. The aim is for you to become fully independent. Unfortunately, it didn’t work for me so I abandoned after 2 sessions. I was very relaxed but nowhere near a state of hypnosis. About 25% of people are not hypnotizable at all.... I’m unfortunately one of them!

...And to add to your Botox survey, I’ve had 2 Botox injections, performed by Dr Bautrant in the levator ani muscle. Since I was also doing PT at the same time, I don’t know which of the two worked for levator ani spasms. It could well be the combination of the two.

kalecolbe12, I would like to take this opportunity to tell you that you are doing a great job starting so many useful threads, sharing your story, giving advice to people, as well as being so supportive to everybody. I really admire your commitment. THANK YOU

[kalecolbe12 in reply to Hidden]

Thank you !!I'm really trying to help people as I help myself.... I am also mind body coach and a life coach certified although I don't really use it in regular everyday life I'm fascinated with the mind body connection and since I started trying the curable app and desensitizing meditation breathing I feel like I've gotten better of course as usual the MRIs and CT scans will clear although I still haven't gotten the colonoscopy for fear of flaring everything up again when I've done so much work to calm it all down...and maybe they'd find something on the colonoscopy but it's doubtful since so many people have told me they still found nothing and it's flare their pain is not too happy with me but oh well I will do a fecal occult test instead and see if that is negative just in case because I am 65 almost 66 but I'm a very young for my age if you know what I mean I live life and sing with a rock band and have fun so this 15 months of pudendal nerve irritation and pelvic floor dysfunction has disrupted quite a bit

[Konagirl60 in reply to Hidden]

What exactly is neurostimulation? What practitioner would do this? Thank you.

[Hidden in reply to Konagirl60]

Hi !

The neurostimulation I am referring to is what is known as TENS (Transcutaneal Electric Nerve Stimulation). It works by delivering small electrical impulses through electrodes attached to your skin with adhesive patches.

A TENS machine is supposed to help block pain messages to your brain. I have read that it could also stimulate your brain to produce more endorphins. Reading your story, your pain could possibly be caused by a wind-up of your central nervous system. If it is the case, neurostimulation might help.

A TENS unit can be used during a physical therapy session or at home. Mine was prescribed by my pelvic pain specialist. They are more commonly prescribed in pain clinics where you can sometimes get one on loan. It very much depends on where you live.

You can buy them without prescription. It is however important that a trained health practitioner shows you where to place the electrodes and which current setting should be used. It very much depends on your condition. The strength of the electric current is up to you. It should be high enough to feel pins and needles but it should never be painful.

My prescription is for a period of 6 months but because of covid-19, my appointment with the nurse who should have shown me how to use the TENS has been cancelled. I probably won’t start using it any time soon.

I do feel for you because my pain is pretty bad when I sit but even worse when I lie down. So I only know too well about sleep deprivation!

Hope this helps. I wish you all the best.

Myriam