Where can I get help

[Ksimmons]

Hello I'm in soooooooo much pain and I have been to so many ob doctors no one can seem to figure out where this is coming from.one doctor suggested a hysterectomy and that was for nothing cause the pain is more severe than ever what do I do now

[PPSN_JudyB Pelvic Pain Support Netwo]

How long have you had this and what investigations have you had ?

[Ksimmons in reply to PPSN_JudyB]

I've had a colonoscopy cat scans ultrasounds and other tests performed and no one can help and one doctor said I had endometriosis then the other said that wasn't the case

[Ksimmons in reply to PPSN_JudyB]

Been going thru this for at least 20yrs

[PPSN_JudyB Pelvic Pain Support Netwo in reply to Ksimmons]

Have you had a laparoscopy ?

[Ksimmons in reply to PPSN_JudyB]

Yes

[PPSN_JudyB Pelvic Pain Support Netwo in reply to Ksimmons]

Have you got copies of the surgical reports ? I would have been completely lost without mine !

[Hidden]

if you had researched hysterectomies you would have found that some can cause pudendal neuralgia.

obgyns are idiots, go see a PAIN CONSULTANT

[2cv1964 in reply to Hidden]

hi maryjane89 - mine has definately been caused by having had a hysterectomy. I agree go and see a Pain consultant to get the ball rolling.

[paulyne in reply to Hidden]

I was ok after a hysterectomy for a prolapse but then 8 years later I had another prolapse but suffered pudendal nerve damage during surgery. It took years to get a diagnosis and only then when I tried to take my own life. I've had nerve blocks, been on a pain management course but nearly 6 years on the pain is the same and my quality of life as anyone with this knows, is really affected. I can't lean forward for long, so can't go out for meals. I can't sit or stand for long, the only comfortable thing is laying down. I was told it was due to a careless surgeon. However rarely this occurs, it's too often. I really wish there was more awareness for surgeons causing this problem. It's sad for my husband and family, they're all affected.

[Woodland16]

Make sure you go to a OBGYN that specializes in pelvic pain. It is a very specific and there aren't many around.

[paulyne in reply to Woodland16]

What is a OBGYN please?

[Ksimmons]

Ok thank you I will do my research

[trishj46 in reply to Ksimmons]

I have been going thru hell! I have to dis-impact from neurogenic bowel. At the same time I have PN with rectal-anal entrapped nerve! Any idea how it feels to keep setting nerve off 24/7?

I have been every where and had every meds a lot like the rest of you! I cannot sit without donut pillow and ice pack with little help. Reactions to so many meds! I feel like pretty soon I am going to lose my sanity! The thought of living the rest of my life like this cannot be tolerated.

I also have spinal cord injury, but not paralysis. There does not seem to be help anywhere! Each Doctor disagree's with the other! Had all injections and epidurals. Feel like I am living in my own little hell! Ask for prayer! Bless all of you!!!

trishj46

[2cv1964]

Trishj 46, yes I shall pray for you. But also Have you actually seen a medical team who definately deals with the Pudendal nerve entrapment? . There is a team in Bristol . have you tried them?!!- (I am in France so do not know the names of any proffessors in the UK). Have you got a Gynacologist who can refer you to a Pain consultant and Nurosurgeon who deals specifically with the PN rectal-anal entrapped nerve? There surely is someone who can help you.! There must be someone who can help! I am on a medication called Rivotril which has helped enormously. However I am thinking of surgery as I have been in pain for nearly 10 years. I sympathise with you enormously - does your Doctor understand all the symptoms properly? He cannot let you not be seen by a Specialist medical team - can you mention Bristol to him or even someone in France. All I know is we all have to push the medics to see us and to listen to us.

God bless you

2cv1964

[trishj46 in reply to 2cv1964]

I live in USA---little is know about PN or Doctors who can diagnose or treat!

trishj46

[pauline19]

There is Dr. Lee Dellon in Towson Maryland, and Dr. Michael Hibner in Phoenix, AZ. But start with a pelvic pain gynecologist. It's a subspecialty. The two guys I mentioned are Surgeons. They're the last stop. I've had the CT guided injections, but they didn't help. Dr. Dellon is only 100 miles from me, but he doesn't take insurance. Dr. Hibner (across the country) does take insurance.....

[Hidden]

anyone tried magnesium along the pain meds ?

Magnesium controls my nerve buzzing feeling...it cures it basically

I'm trying to understand how some can be unresponsive to lyrica and amitriptyline