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Pelvic Pain Support Network

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XsparkleX profile image
11 Replies

Hi everyone I’m looking for help and advice. I’m struggling with chronic pain that started when a surgery went wrong 3 years ago. I left the hospital on morphine and have been onit ever since. It’s helping less and less and I don’t know where to go from here. Anyway this is just a hi. I hope to get to know some of you soon. Thanks xx

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XsparkleX profile image
XsparkleX
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11 Replies
StevenM profile image
StevenM

The problem here is often that your body gets used to morphine and it becomes less effective. Escalating the dose may give short term help...but the same may happen again. You should have a follow up with your GP to talk about your medication and other ways of managing your pain possibly such as mindfulness meditation and CBT as well as prescribed drugs....but there is very often no easy solution, it is just a case of how best to cope with your condition. I have learned over the years that one's mind has so much influence over the severity of pain. Staying positive is important....it is not easy...but there are techniques to learn.

XsparkleX profile image
XsparkleX in reply to StevenM

Hi Steven. I’ve had lots of other meds with no relief. I try to keep my mind active hobbies etc and sometimes meditation. But the pain is persistent. I’ve had lots of surgeries on my stomache and my bowel. I’m trying to find an alternative. I hate the morphine Maybe Botox would help with my chronic anal pain. I’m here to learn. Thanks for your response xx

StevenM profile image
StevenM in reply to XsparkleX

Have you actually had a diagnosis? Are you under a pain clinic? Regrettably there is often no easy solution...the key is never to give up hope...although that can feel difficult at times.

I have suffered for 15 years and for me things have not got easier. I think I have tried just about every alternative to date (for pudendal neuropathy) except outright surgery. I have carefully weighed up the pro's and con's of surgery and for me, I am not prepared to risk it. I am sure others on this forum will do their best to help you and provide possible solutions.......for me, the mental side of this condition is as bad as the physical side. Good luck!

Konagirl60 profile image
Konagirl60 in reply to StevenM

Hi Steven. I suffered intractable nerve pain for 3.5 years due to my right pudendal nerve and right inferior rectal nerve being pinched by two overused ligaments.

The ligaments had ‘ juxtaposed’ due to my extreme athleticism and doing too much hip-flexion and stooping in my adult life.

The neuropathy was slow forming and the symptoms were slight at first ( rectal tingling ) but eventually I simply could not sit.

A gynaecologist suggested physiotherapy and after four internal pelvic treatments the pain worsened. I could not lie down either and thus I could not sleep. I almost died from lack of proper pain control for the neuralgia and sleep deprivation.

I had the decompression surgery and it worked. The burning pain was gone! It has taken many years for the irritation inflammation to go away.

I have not healed fully because at the same time metal Filshie clips had fallen off my Fallopian tubes and migrated in my pelvis. One was on my rectum for 9 years causing terrible pain and incontinece with stool. It was removed last year.

I just know I will heal when my wonderful gynaecologist removes the second clip from within or behind my bladder.

I could not live with my pain. I am SO GLAD I had surgery. You may want to reconsider. The best surgeons for this are in France.

Faezehdm profile image
Faezehdm in reply to Konagirl60

Hi dear konagirl60 , i am a 25 year old girl and i have pudendal neuralgia for 7 years.i want to get decompression surgery in france.do you know howmuch does it cost?thanks alot.

Konagirl60 profile image
Konagirl60 in reply to Faezehdm

It cost $40,000.00 American for me to have the unilateral right sided nerves ‘released’ in 2011. I have no idea how much the French surgeons charge.

If I am correct, they will operate only if three successive one month apart nerve blocks with anaesthetic and steroid do NOT help the nerves to calm down. If nerve blocks do not work, it is likely one needs surgery. No medication helped me. Instead, I lost cognitive fucntion and nearly went insane from untreated nerve pain.

Faezehdm profile image
Faezehdm in reply to Konagirl60

after surgery can we have sexual intercourse without having pain.it's very important for me to know it.because i'm not married and i don't know can i marry in the future and have sex without pain in the future after surgery?thanks alot

Konagirl60 profile image
Konagirl60 in reply to Faezehdm

Are you able to have sexual relations now? If you have surgery, depending on how long your nerve(s) has/have been left pinched, it could take years before normal enervation occurs again in your groin.

I have not been able to have relations for ten years now. I am not happy about it. I raised a child alone and was hoping to finally meet someone new once my child had grown up. This has made that impossible. Slowly I am starting to feel some desire but very little. Medications make me way too tired.

Faezehdm profile image
Faezehdm in reply to Konagirl60

Well i haven't had vaginal relation in my life and i'm wondering can i marry in the future after surgery and have sexual intercourse or not?i'm so sad about how you felt these years.i hope god bless all of us.

Yummymummy32 profile image
Yummymummy32 in reply to XsparkleX

Our stories a nearly exactly the same. I know how you feel lovely. Hope you can get some relief soon.

stenosis49 profile image
stenosis49

Hi there, I battled with chronic pain after surgery for prolapse back in 2012, it took till sept 2013 to get onto pregabalin and amitriptyline which helps to calm nerve pain. The pain clinic I attended tried the morphine and tramadol but with no effect. I to suffer with anal pain etc due to the prolapse repairs but now since being on these 2 meds I do get relief from the continuous pain that was. was told by a top consultant in London on the nhs of course that I was totally on the wrong meds , slow relief morphine and tramadol do not help with chronic pain. hope this helps, we all strive for relief from this torture this kind of pain brings

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