Pudendal Nerve Damage following hysterectomy

[Whangareinik]

Hi can any ladies relate to my treatment damage whilst in surgery for hysterectomy. I am just curious how other people have ended up with Pudendal Nerve Damage? I am having a battle with a medical insurance company them saying how do I know it's damage whilst in theatre, my surgeon agrees it is...how can I damage my own nerves? I know nothing about this problem only the pain is like constant sun burn down below. Can anyone tell me what caused their pudendal damage...thank you so much for reading, my best wishes and strength is with you all x

[Janebee]

Hi I had my hysterectomy over 30yrs ago and ,my surgeon stitched my urethra tube and I was rushed back into hospital they thought I was going to lose a kidney but managed to save it When I was in my twenty s I had a lot of gyn surgery done and I had adhesions round my bowel that were cut away and I was told they can grow in again I don't know if all this has caused all my problems today.I hope you get on alright and everything goes well for you

[Whangareinik in reply to Janebee]

Thank you for your kind reply sorry for your pain

[Hidden]

I had a posterior vaginal repair for a rectocele (prolapsed rectum). I woke up in pain and it hadn't stopped since! Somehow, nobody can explain/admit how, my pudendal nerve was damaged.

[Janebee in reply to Hidden]

The same happened with my hysterectomy and I went to a lawyer and all my medical records went missing so the hospital say

[Hidden in reply to Janebee]

Nothing went wrong with my surgery, I've seen all the notes. Nobody can explain. I tried to take it further but nerve damage is a risk with any surgery and I signed the consent form. So I just have to let it go and deal with the future not the past. Take care.

[Janebee in reply to Hidden]

It's shocking you go into hospital to be cured and come out worse than you go in hope everything goes alright for you

[Hidden in reply to Janebee]

Thank you. But it is up to us as patients to research and ask lots of questions about the procedure that us recommended. All surgery comes with an element of risk, no matter how good the surgeon. Back when I had that done though, I took the dr at his word and expected to come out of hospital better, now I question and research everything. I hope you are fully recovered from your ordeal. Take care.

[Janebee in reply to Hidden]

This is it we don't we put our trust in the surgeon I will be thinking about you hope all goes well

[Whangareinik]

Thank you for your time.

[peters1]

Combination of over exercise with fibroids for a long time.....vaginal assist hysterectomy and then had to have a prolapse repair and it was after that surgery that the nerve symptoms began.

[marybeex4]

I could not sit without dreadful pain from the day I had my hysterectomy and was sent home to face years of pain and misery. No one would help other than by sending me around the circle of pain clinics. In desperation, I went on a search elsewhere for help and it eventually turned out to be pudendal entrapment and I have since had the nerve released If only they would have listened to me before tho, it would have saved me many years of intense and mind blowing pain plus endless time in pain lectures and appointments and the taking of so many different drugs to try to relieve the pain.. . I am convinced it was because of my hysterectomy op but soon realised there was no point in speaking out.. who would listen? At least I am on the road to less pain now.

I wish you all the best with your own adventure with this very painful condition. Good luck, you will be in my thoughts.

[Whangareinik in reply to marybeex4]

Goodness how terrible, I really do hope you are better now and hoping I won't have it as long as you suffered...14 months, but at least I had it diagnosed (albeit by my partner) then confirmed by Specialists.. thank you for your reassuring kind words. Live happy, I know I will one day x

[Mascaro in reply to marybeex4]

How did you know it was entrapment? What did they do to make that decision. Did you have pain when you slept? Second, did they release the nerve and leave it in? Who did the surgery ? How long was recovery and was it very painful. Are you pain free now? Can you sit for long hours?

[marybeex4 in reply to Mascaro]

I had nerve blocks into the pudendal nerve given under a ct guided scan. The pain stopped for three delicious weeks. this showed it was the nerve causing the problem. They released whatever was entrapping it which hopefully means the nerve will then eventually settle down and be pain free. Its early days yet so I cant claim to be pain free but I am very hopeful. Good luck. I will keep you posted as time goes on.

[Mascaro in reply to marybeex4]

How do you know it is released ? I have had those done but it is suppose to relieve the pain and bring down inflammation. Please give me any details or anything else you have done. It seems mine is all pudendal neuralgia. Sitting is my problem and I don't know what else to do. I am on meds, PT, and dexamethasone. I have burning when I sit and I feel like I am going crazy.

[Debra13 in reply to marybeex4]

Hello,

I go for 2 Pudendal nerve blocks a month and they don't release the nerve damage I have at all. They give me only 2 days of pain free at most at that is it. You are very lucky. I have had so many of them and have lost count at 26. God bless you. Deb

[Debra13 in reply to Debra13]

I guess what what I'm trying to say is what works for some doesn't work for all. I've found that this disease is very unique to each person. Unfortunately. 😿 I pray everyday that they find a cure for all of us. Deb.

[musheey in reply to marybeex4]

Please let me know how you are doing? I am going through this now and having a block done this week. I had my hysterectomy in November and the pain started for me shortly after! I cannot sit without being in secs pain! I am scheduled for 2 MRI’s soon as well . You had the block done but tell me more about it being released. I really would Ike to talk to you !

[Matilda1304 in reply to marybeex4]

Do you mind saying who did your surgery please?

[Whangareinik in reply to Matilda1304]

Hi unless you are about to have surgery and live in or around the Whangarei nz area I wouldn’t say, it’s not relevant. With respect.

[Matilda1304 in reply to Whangareinik]

Thanks so much , I am about to have surgery and am travelling to France so NZ would be relevant. With respect many come to Australia for Surgery from NZ

[Barbara9 in reply to Matilda1304]

are you heading to nantes or Bautrant?ive just been to nantes.

[Whangareinik in reply to Barbara9]

Did you feel the benefit from going to Nantes. What treatment did you receive there and has it helped? I look forward to hearing from you, I have been in agony for two years now. Please let me know I live in New Zealand. Kind regards

[Matilda1304 in reply to Whangareinik]

I live in Australia , do you want to email me? I am hoping to go to France

[Matilda1304 in reply to Barbara9]

Who did you go too? Robert has retired. I was hoping to go to Bautrant!

[Whangareinik]

Good luck! Many go to Australia for treatment, ok. All I can say is how blessed you are going to France. Congratulations I hope you get better treatment than nz

[Barbara9]

I'm happy to email,don't know how to give email confidentially here.i had injections for 1 1/2 years in Nantes then saw prof Robert dec1,he retires now,it will be Ploteau.i think best visualisation this surgery but scared of ligaments being cut as I have so many issues already,no bowel function and mesh from surgery.

[peacockblue]

There are many ways it can happen during a hysterectomy ranging from being positioned incorrectly or trocars being placed incorrectly to a stitch causing pressure on the nerve. You mentioned that your surgeon agrees that it happened during the operation. Has she offered an explanation of how it happened?

[SuzyQ in reply to peacockblue]

I was very interested in your comment on this thread Peacockblue.I had a vaginal hysterectomy in 1996(!).

After several years of appointments I saw a surgeon who believes that my legs were allowed to fall apart too widely whilst I was under general anaesthetic. He believes that my pudendal nerve was trapped as a result of that procedure. I had no joy taking legal action against the hospital because 3 years had gone.

I am still in pain now. I have a neuromodulator stim inserted in my right buttock which gives some relief to my genital area, but not the deep pudendal pain.

It’s shocking how easily we can be damaged during routine surgery and no one is held to account.

Thank you for reading and I hope you are all managing your pain journey. Best wishes 💖