Pudendal neuralgia

[shilsenrod]

I believe I have been suffering from PN for over a year. I have seen many doctors and have had nerve blocks with a few hours of relief. i also had pulsed radiofrequency nerve ablation with i day of relief. Recently had bottox and seeing a PT. the PT is all bookeed up and I had to make an appointment with another one and they will see me in 3 weeks. In constant pain and tried to commit suicide twice. Under psyc care and don't want to hurt myself but I want the constant poker up my ass to go away. and the burning vagina to stop. Has anyone seen a helpful doctor in NY that takes insurance. At th end of my rope.

[kalecolbe12]

Hello I don't know how long you've had this but I have it and I went through a year and a half of pelvic floor physical therapy and I did muscle relaxers which help both helped and then I do this stretch is breathing complete relaxation techniques and take as much stress out of your life as you can which help so it takes a lot of modalities anyway I still had some burning and I ended up going on a low dose nerve pain med which is also for depression and anxiety which has done the trick and helped a lot .....whether you want to go on meds or not to me it doesn't matter I just was desperate for help and ended up having severe anxiety from it all so after 4 years I am now living a pretty normal life.

[BlueLagoon007 in reply to kalecolbe12]

Hi, I am just just wondering what low dose nerve pain you went on? Many thanks,

[BlueLagoon007]

So sorry to hear you are struggling so much. I have had it for 13 months and still in immense pain and basically just spend each day lying down. Now also have intussusception where the bowel telescopes into another segment of the bowel. So with pudendal neuralgia and intussusception the pain at times is almost unbearable.Stress doesn't help and I know that is part of my problem but it is so hard not to be stressed when you are in so much pain.I am currently in hospital to be seen by a pain management team tmrrw to try and work out a solution. Had one nerve block in January and due for another one in 2 weeks.

There have been a number of times I haven't wanted to not be here too so I understand where you are coming from but we have to have hope that eventually someone will be able to help us.

Sorry I live in Australia so can't help re doctors in NY.

Hang in there and just keep fighting and keep pushing to find the right doctor to help you. You have to be your own advocate but trust me I know how hard that can be.

Try to stay strong.

Thinking of you. Take care

[RobertVerde]

Here are two websites that will help with information:

pudendalhope.info/ - there are lists of PT's and some docs that specialize in PN.

health.usnews.com/health-ne...

I also found a book that helped me as well: “A headache in the Pelvis” which you can find on Amazon.

Good luck!

[Desperateforrelief]

If you can get a script for B&O's (belladonna and opium) they relieve this pain almost 100%. But still need to address the underlying issues as you don't want to live on these. They work for bladder and bowel pain from pudendal neuralgia and take away the pain that oxycodone doesn't touch. Really great for urethra pain. The pudendal nerve affects the bladder, bowel and sexual functions. They were a God send for me. I do not need them anymore. I was in bed for 2 years. I know how much you want to just escape this pain. It is horrible. If you can travel to AL, I highly recommend Dr. Childs who is in Birmingham, AL. I have traveled all over the US to get help. It is finally paying off and I'm returning to my life. I lost 13 years of my life to this. It isn't perfect now, but pretty good. Hang in there, keep researching. Take an advocate with you. It will get better!!

[Konagirl60]

Dr. Mark Conway in Nashua, New Jersey may be the doctor for you.

I had PNE and was brushed off by all the specialists I saw in Vancouver, B.C. including my GP of 21 years. They were certain it was all in my head and I was mentally unstable.

I was misdiagnosed, verbally and emotionally abused, and I was utterly dismissed. My nerve blocks were done incorrectly by my BC Pain specialist.

I sought help in Toronto ( 16 months after I couldn’t sit or sleep ) and I was referred to a specialist in Minnesota.

I saw the urologist in Minneapolis and after a perfectly done fluoroscopy guided transgluteal pudendal nerve block was done ( using both anaesthetic and 30 mg steroid ) I sat pain free for the first time in 20 months for 12 hours. This block confirmed I had pudendal neuropathy.

I came home to BC and I stood up all day for a month ( as per urologist’s suggestion ). I saw my GP and she was furious with me. She did NOT believe the Minnesota specialist AND she told me my pain specialist had dropped me as a patient. Why?

After four years of utter agony and tortuous burning rectal pain ( I was losing whole bowel movements and not feeling it happen…24/7 incontinence ) I hired a registered nurse consultant. She procured my decompression surgery. The doctors where I live left me to become disabled and to die from uncontrolled pain and severe sleep deprivation.

I’ve had the three surgeries I needed and I’m slowly healing. I sit on a sponge toilet seat and I wear pain patches if needed. I avoid carrying anything too heavy, I rarely bend over my groin and I avoid hip flexion movements.

I hope you get treated properly. This is a life changing and highly disabling condition.