Pudendal nerve pain - surgical intervention

[Radovic]

Hello to everyone.

My name is Vladimir. My mother is a 71 year old woman, who suffers from pudendal nerve pain. No blocks, no medicine helped her. Now she has become depressed, eats poorly, mostly sleeps, has lost a lot of energy and strength to fight. And that's why I, as her son, decided to fight for her.

I have seen some of the topics about pudendal nerve and as I can see it's very difficult to solve the problem.

Some people here and on other forums, recommend the Nantes. Is that some clinic or hospital?

Does anyone know what the e-mail address is, phone number and who I should contact? If it's possible, I want to do everything in my power to help my mother.

I'm desperate and don't know what else to do. 😢

Thank you very much in advance.

[PainNoPain]

Nantes is the heart of pudendal neuralgia - if you go on pudendal hope website I think the details are on there….theres a lot of people on here who are suffering with same or similar condition. Medication takes time and there a lot of trail and error…I hope she gets well soon

[Aprilbaby24 in reply to PainNoPain]

There is also a clinic in London called the Whitely clinic, if you Google it, there’s a simple form to fill in.£980 for first consultation!! Good luck

[Normie-Orms]

hi there. I'm sorry to hear that your mum is suffering . I'm in the same boat. They say mine is all in my mind as they can find no physical sign of anything. They call mine complex PTSD and fight or flight syndrome. 2 things that relieve the pain. 1. Smoking a vape with HTC cannabis oil in it. Or swimming in the ocean. Oh the other one is sleep when I become unconscious. I have sexual abuse in my childhood history so that could be playing a part. I also have osteo arthritis in my hips and lower back which I will be getting checked out with an orthopaedic surgeon. Hope any of this helps. I've had mine for 4 years. Kind regards Norma

[Aprilbaby24 in reply to Normie-Orms]

How interesting! I have sexual abuse in my past too!! They do blame it on trauma!! Just had my first caudall epidural 2 days ago, too early to feel and difference! Altho I have developed a pile🙄

[Normie-Orms in reply to Aprilbaby24]

Hi there. What is a caudall epidural and how did they come to that decision? My son is a remedial massage therapist and he says the L1 spine joint affects the pelvis and thighs and feet. So I'm looking into that. Norma

[Aprilbaby24 in reply to Normie-Orms]

Hi, the epidural is a steroid injected into the spine, apparently to open up the veins and therefore create space. Had mine a week ago today and been in severe pain since!!! I’ve travelled down the country to stay with my mum, for company and a different view out the window. Rang the pain clinic who is in charge of me now but they didn’t pick up!!!!

[BlueLagoon007]

Hi Vladimir,I am so sorry to hear about your Mother. I am also 71 years old and have been suffering from pudendal neuralgia for 2 yrs and 4 months.

I have had 3 nerve blocks, Ganglion Impar Block, Botox into 2 pelvic floor muscles and anal sphincter. I am on a low dose of Pregabalin which I hate but if I don't take it daily I do notice the difference.

Has your Mother seen a pelvic floor physio as I have found that to be very beneficial but it takes awhile. I also regularly see an osteopath.

Recently had bowel issues with it as I have a rectocele and intussusception. I was getting alot of bowel spasming so hence the botox into the anal sphincter.

A good pudendal cushion is also a must as it helps with sitting down.

Has your Mother seen a good gynaecologist who knows alot about pudendal neuralgia as a lot of medical practitioners don't unfortunately.

If your Mum is depressed would it help if she saw a psychologist to help her through this awful health condition.

It is a very difficult chronic condition to have to deal with and I feel very much for your Mum as I understand completely how she feels.

Tell her not to give up hope though. She is very lucky to have you to help her through this as that is so important.

Keep advocating for her, she needs your support.

All the best and I do hope your Mum can get some help and relief which she so deserves.

Take care

[Rosielover]

Hi Radovic, so sorry to hear your mother suffers from Pudendal nueralgia .

The email for the private hospital in Nantes is [e-mail]

The doctors name is Docteur Thibault RIANT at the Confluent hospital prive in Nantes. The previous doctor at the hospital mentioned in several post on here was Dr Robert ? he has retired. My sister and I visited the hospital where we met Dr Riant and he is the doctor that carries out the tests to confirm Pudendal Neuralagia. He also does nerve blocks. He does ask you to fill out a long questionnaire before the appointment as he does recommend several drugs to take. I don’t know if he could see your mother via virtual appointment. My sister is scheduled for surgery in September.

They are not very quick to reply to emails as they have 3 secretaries covering all emails so you never get to hear from the same person twice. Some replied to us either in Italian or French. We do not speak French so used Google translate. Also not sure where you are but another Doctor Gareth Greenslade works out of the Spire Bristol Hospital in Bristol England and often referred patients for surgery to Nantes. Tel [phone]. He also prescribes drugs and offers nerve blocks.

Hope this helps. Keep on trying for your poor mother.

[sungirl55]

Vladimir, I've been offering prayers for your mom. Maybe she doesn't need doctors at all. I have a tight pelvis and I wonder if that's what your mom has too. In my case, just learning to relax my mind and not to panic and feel in a constant state of anxiety has helped a lot. Check out Pain Free You on you tube. The man's name is Dan Buglio and he talks about chronic pain and how our thinking keeps it going. He has several success stories of ladies with tight pelvic muscles and one man with pudendal neuralgia, which can be the same thing as just a tight pelvic floor. If you have an anxious nature, your pelvic floor muscles can tighten and cause terrible pain in the genital region. There's also an app called Curable. You might look into that. I've tried medical procedures and medicines and nothing has worked. Changing my thinking has worked best so far. I was once like your mom and didn't want to eat or live at all. I do see a pelvic floor physical therapist once a week. She stretches my pelvic floor muscles (internal work). If you're in the US, I can call your mom and chat with her to lift her spirit. I know how hard it can be to cope with the pain.

[Julieamb]

Sorry to hear this. It is a very painful condition! I am in the states and have a wonderful pain management doctor who does pudendal nerve ablations on me. I also did a-lot of pelvic floor physical therapy. The ablations have been a miracle and I no longer need them. It took several times and each time it got longer in between needing them. I hope she finds some relief and she's lucky to have you helping.

[iatrogenic-sausage in reply to Julieamb]

Hi, can you please tell me who the MD is who does ablations? I’m also in the states. I know one might have to travel. They seem few and far between.

[Julieamb in reply to iatrogenic-sausage]

DR. Abdelmalak at the Cleveland Clinic, he's amazing.