Health Organization for Pudendal Education

Hi all.

I haven't posted in quite some time. I found this site by "accident" one day, mentioned the possibility of pudendal neuralgia and/or entrapment to my gynecologist, he quickly copied an article on the topic, suggested I see a neurologist who specializes in women's issues. I then had countless MRIs, an EMG, and was placed on Lyrica. Meanwhile I had numerous other specialist visits with countless procedures; one specialist, my oncologist, ran countless blood tests as I also had an unintentional 50 pound weight loss after abruptly stopping (not smart - I know) Wellbutrin that I had been on for 10 years; we have no idea what is and has caused the weight loss. Additionally however, I rarely have an appetite - who on earth would be hungry when you're in constant pain? No one is really able to come up with any real answers for anything that I'm experiencing; pain or otherwise. BTW - I now appear anorexic. On the latter: I'm in constant pain, I have a job which forces me to sit for many hours, the job itself is extremely stressful to begin with (understatement), I'm stressed out due to the constant pain and the mere thought of having work under these conditions is mind-bending, anxiety and depression are in the picture - vicious cycle. I have ZERO life. Here's my question: Does anyone here have burning and/or icy sensations in the perineal area, low back pain, waking up in the morning feeling the contents of your lower intestine peristalsing and burning at the same time, wretching, constant pressure on your bladder and lower pelvic area? I also have shooting pain in my right hip. If anyone can relate and/or have suggestions I would be most appreciative. I'm so sick (literally) of not being able to function at the very least without loading up on pain meds (one of which is a fentanyl patch 25 mcg which I've been on for years and I now no longer feel its doing its job and I worried that my PCP won't increase the dose), muscle relaxers, anti-nausea meds, et cetera. If it weren't for my husband taking on so much I think I would be somewhere that I'd rather not mention here. I apologize for rambling and know that much of this is redundant. Again, I'm at the end of my rope; I no longer feel I have anything to keep me going.....

Hang in there.

Dear Jat, Please dont feel depressed, I have all your symptoms and more.I am also struggling with my pain everyday and I know how it feels. Though I have accepted my pain and I am trying to live with it, most of the time the pain is controlling me .Take enough medications, have found a lot of relief with lyrica, be as comfortable as possible, dont do any job that will aggrevate your condition and thank God for everyday. Eat healthy, I know it is hard somedays, but I try my best to maintain a positive attitude, dont ever feel alone we are all there for you. Seek medical help and look for doctors who specialise in PN. My prayers for you.

JAT, I can relate to the burning, icy sensations in the perineum. I had some loss of appetite, weight loss, and intestinal symptoms but never wretching. How long has it been since you went off the wellbutrin? I've read that it can be pretty brutal to go off an antidepressant suddenly.

Have you seen Cora's posts on suboxone and chronic opiod withdrawal?

What about the tarlov cyst -- is it large enough to possibly be causing some of your symptoms? Hermajesty posted on this subject and was in the process of seeing a surgeon who specializes in tarlov cysts.

You still have some options -- it's just a matter of figuring out which one is right for you. Hang in there and keep fighting until you figure out the right diagnosis and what will work for you.

hi
Just wanted to offer you support and echo what everyone said.. I am in a similar situation, differnet pain issues but high levels of unresolved pain like you..
I wanted to agree with what Violet said about Tarlov Cyst...might be something to look into further. Dr Frank feigenbaum is from what I know the only Us surgeon currently dealing with these..I have one or 2 or these as well per my MRIs. I have joined the Tarlov cyst Survivors Group...where you''ll be able to get more info.. There is also the Tarlov Cyst association and a gal you can call there who will speak with you in detailabout it. (Im blanking on her name right now but I will post it when I remember it!). she is very passionate about this issue, so you have to keep in mind that the best way to know if could be your pain issue is to get a full sacral MRI...You can speak with Debbie West (Dr F's surgical nurse, she is kind and helpful and gets back to you quickly via email or phone, and they will call in the MRI rx to your MRI center if you decide to do it...
I am going to get a new MRI soon,as Dr F wants currents MRI pics before he will do a phone session with you. I am in too much anal pain to lie on the MRI table so we are working on my meds ..to get better relief first.
Its a possibility to investigate.
I echo the advice of the other folks whose courage I admire..I too have a husband who has been great and believes we will get thru this and we WILL get our lives back ...and great kids so Im trying to be strong.I come on here to learn from these great folks..I struggle daily to keep my hopes up.
I have mainly severe pain in anal area, so I can't sit at all,, and following a peripheral nerve surgery which was so wrong for me, now cannot stand or walk without this new anal pain..I also have IC bladder issues (where this all began for me 5yrs back).
My heart goes out to you.. hope this info is helpful
Warm regards,
Kathy

Kathy-

Your story is heartbreaking! What nerve was operated on that made you have such severe rectal pain?

Prayers for you ---- hugs and HOPE too-

A's Mommy

Hi A's mommy
Thx for your kind words. It was on the inferior cluneal nerve and PCFN --a resection on the right side...done to remedy the sitting pain..Unfortunatey it made sitting worse and caused the issues I mentioned above..
I'm guessing as we had discussed , due to new scar tissue in the surgical area.. (this area in under the buttock is not right by the anus,, but I guess the tissue prouts out.. and grows into surrounding area.
I always wonder what truly constitutes a postive nerve block? I had decent relief for only about 3 hours, I could sit, but I wasn't numb... (pain was way in backround tho) So the surgeon considered it a postive block and the surgery was based on it
I am interested in all the new info about the Cornwall guys and have spoken to Glenn, who was very kind and informatve and explained a lot of things esp the scar tissue issue.. Tho I am wary, all he said made sense!
I will follow closely the reports from the folks who went there. I asked Glenn about my issues including my worry about doing painful treatment (after all the CNS windup) I have incurred with the many treatments etc..
His answer was quite re-assuring, and hubby and I will continue to research these treatment..
Something to think about for all of us looking to get out of pain.
But of course like most folks afte all that has happened I am very wary of ANY kind of treatment..
Glenn asked that anyone who haswork done with them at Corwall post as soon as possible to help others learn aboutit... Im grateful to those who have posted.
how are you doing ... i hope that your pain levels are well contolled and that you're functioning well
Thanks again!
Warm wishes
Kathy