Health Organization for Pudendal Education

Hi Jeff,

Thirty years is a long time -- I'm sorry you have suffered for so long.

Overalls sounds like a very clever idea for people with PNE as I know many have difficulty with any type of tight clothing in the pelvic area. Typically leg bands are a problem but I can see waistbands becoming a problem too if you have developed any type of central sensitization from so many years of pain.

I hope your procedure goes well this week and that you will have a significant amount of pain relief with the neurostimulator.

Best,

Violet

Hi Violet and all
I am considering neruostimulation but am praying I have other options before I try this one..
Many things have failed but I still have to keep the faith that I will get better.
Anyway, my doc and I are going to discuss this device soon.. We are working on a new med (and there are many ) but hopefully will fnd one for my anal pain which seems to be worsening.
My bladder has trouble emtyint from meds and that has been a problem for me in finding a pain meds. My docns and PT want me to be up and about and living my life but with this anal pain it is very hard.
I will continue reading about this device before I go this route.
Thsx for all the info.

Quick question may be for a different section, but someone mentioned they had trouble with waisbands.
I have some minor sensitivity to tight clothes and elastic around wast but had this years before my Ic symptoms or PN symptoms startedl. Basicially tight waistbald like elastic or tighness around my abdomen area eventually lead to stomach cramps/ and stomach distress..only with very tight things tho.
Just thought it was a quirk of mine but some one suggested this might indicate central sensitization?
wondered about that as I felt this annoyance with tight clothes as mentioned long before anything else was wrong with me.
Thanks for any info... I has minor IBS symptms back then which went away, but know someone else with IBS who can't wear
any waistband not the case for me..
thx again
Kahty

kathyd

What stage are you at regarding the stimulator?
For many people the sensitivity of clothing is normal, as violet has said particularly around the pelvic region; like you I have always had a sensitivity around my tummy and legs as well, in my case it has been diagnoses as CRPS so now I just avoid any harsh fabrics completely.
With regards to the Stimulator, it is not good to have tight waistbands as they tend to stick into the actual implant and its not very comfy.
Hope this helps.

If you live close to Detroit doctor Peters from Women Urology Center does it for many years. He trusts stimulators more than decompression and offered this procedure for me. He has good internal PT who specialises in PN. I do not want it and lean to actual decompression

Helen, from what I've seen, Dr. Peter's publications typically focus on the benefits of neurostimulation for voiding problems such as incontinence but I don't recall any publications on relief of pain for PN. Did he say what success he is having as far as PN pain goes?

Thanks,

Violet

Where did you have the interstim procedure done? Did your insurance cover it? I think this is the road that I am heading down. Any info would be greatly appreciated. I have had 2 bilateral pudendal nerve blocks and a bilateral pudendal nerve radio frequency ablation.

Hi my name is Pat! I have lots of pain from spinal cord surgery. Thru the last three years I developed symptoms of PN.
I do not tolerate any medications! About a year ago my Doctor said he could put in stimulator for pain in upper back.
I asked him if it would stop pain in anal-rectal site radiating to vagina, and I was unable to sit, had feeling of foreign object in rectum.
HE SAID NO!!!!!! I was directed to your site. Could you tell me anything you could about having it placed in you and what symptoms
it relieved???? Would appreciate your input! God Bless! Thank you!!
trishj46
Pat

Amanda,
I have posted before, but am anxious to know if you can tell me if stimulator relieves anal-rectal nerve? My surgeon in the past , who knows nothing about PN told me it would
only relieve upper back pain. I am in a very bad place right now. No appointment for pain management till April 1ST. I cannot tolerate meds. These last two days have been horrific with pain.
Cannot sit down at all. I have no one to help me out with all this. I was lucky yesterday to call primary and get Percocet to take the edge off. Would someone at pain management be able to help with stimulator? Would I be able to sit? I don't know any other recourse, and don't understand why things have gotten worse over last week or so after getting out of hospital.
Also pain radiating to vaginal area. Neuropathy in both feet on fire and pain with swelling. Never had swelling before. I am scared I seem worse. I hesitate to take Percocet for fear of using it up.
Only had one at 5am and then 2pm. I needed more in between. Please help if you can!! Thanks!!!
Pat

Pat,
The pain specialist I see had a stimulator as an option in his list of treatments and hopefully the one you see would also have one. I did not need it so I did not try it but it was available. You could call and ask the office if that is a treatment option. Glad you are getting some relief with percocet. Janet

Amanda

Are part of the symptoms of PN include the excruciating rectal anal pain, but also can it be felt in the abdomen, hips, lower spine. I have spinal cord injury but m confused about what is doing what? Very bad flare up this week that included all these areas. When I felt pain in abdomen kept thinking
I had cancer!! Can this happen with PN??? Thank You!!!!!

trishj46