Pudendal neoropathy

[rozamond]

I am new here living on oxicodone and ice treatments due for ganglion impar procedure next week . The pain in rectum has become intolerable I try my best to keep going but it is becoming harder and harder if this treatment does not work Drs want to place a permanent spinal chord simulator for the problem trying to investigate this also

[boboveena28]

Hi I also suffer from rectal pain which is a lot worse during my periods? Is it levator ani that u are suffering from? Did your doctor talk to u about botox? My pain specialist told Me that our rectum has the most sensitive pain receptors. So I can feel what u are going through as I suffer from rectal pain as well daily. Hang in there!

[Rmoretz in reply to boboveena28]

I have levator anti syndrome. Pain 24/7.

Doctors tell be it's a puzzle. No one knows what to do for a cure. Sad.

[mommalynn in reply to boboveena28]

I have the buttock pain and is always so much worse with my period. Guess when everything swells in there it presses on the nerve.

[rozamond in reply to boboveena28]

Have ad Botox injection worthless. Did nothing for rectal pain

[rozamond in reply to boboveena28]

Had Botox injection did nothing

[rozamond in reply to boboveena28]

Had Botox did nothing

[mommalynn]

Wow I just read your post and it's exactly what I've been dealing with for 2 1/2 years. On oxy and gabapentin. I've tried the stim and it did nothing. I've tried everything except surgery and I'm not willing to try that. Haven't tried gangliar block or Botox as was told it wouldn't help. I agree with you as it has taken over my life. I have pain in my buttocks and within the last 6 months when I wake up in the morning my feet and hands are numb and my calves are tight. I will say once I get up that goes away. I never dreamed I would be on any meds like this as I was always one to never take anything including tylenol. I will say when I take them it does calm the pain down to manageable but when it's really flaring I cannot function at all. It feels like it has affected my whole system. I have pain 24/7. Mornings are worst for me until I have more meds in me. I don't want to take them yet can't function without them. Reading all the posts on pudendal neuralgia hope and a few others really doesn't give me hope. Nothing really works for anyone. Don't get me wrong there are a few yet most say they ones with the buttock pain are the hardest to help. Some are trying cryo but the doctors say it won't work for buttock pain. I truly hope something works for you. Some say pt helps. Have you tried pt? There are a few that the stim worked for and if you do try it, I pray it works for you. The most discouraging part for me is most doctors don't treat this and most have never heard of it. Feel like there is nowhere to go. Maybe someday. One can always hope I suppose. Wishing you the best of luck. Hate that we all have it but good to know we aren't alone.

[rozamond in reply to mommalynn]

There is a new Mai called mrn neoropathic it pinpoints exactly where the problem exactly where the entrapped nerve is I am looking in to it today will let u know error above mri called

R up until now mri did nothing

[mommalynn in reply to rozamond]

Is it different than a MRN? Ive tried the MRN and it showed nothing unfortunately.

[rozamond in reply to mommalynn]

Was told. There is a new mrn that pinpoints just where the pudendal nerve is I am looking into it will let u know outcom. Mri does not but this mrn more acurate

[mommalynn in reply to rozamond]

Thank you so much. That would be such a breakthrough. To know exactly where the problem is without having a decompression surgery would be wonderful.

[rozamond in reply to mommalynn]

I am going to try p t the end of December I will let u know if I get any releif

[rozamond]

Thank you for reply I am going to try ganglion impar injection in 2weeks .i am desperate . Will let you know outcome

[ljlmax]

Hi Everyone,

I too suffer as all of you have stated. I have nerve pain in my feet due to a surgery back in 2004 and in 2007 I had a neurostimlator implant to reach my feet which was quite successful yet I had an infection at the incision site that they tried to treat for 6 months. I had to have the hardware removed as i ended up with a staph infection (i was taking antibiotics yet after 2 weeks, incision would open again and back on stronger ones.) Subsequently, pain in my groin started and led to severe pelvic floor pain. After 2 years going to too many docs to mention, I was diagnosed with PNE. I have had 6 pudendal blocks, ganglion par blocks, S1, S2 and S3 blocks, pelvic floor physical therapy for 2 years, botox injections and I just recently had inferior hypogastric plexus blocks on S! -S3. I have not had any successful results.

The neurosurgeon did put the stimulators in my legs, (very unusual) and the leads are attached to my sciatic nerves reacthing the bottom of my feet. (At that time, he wanted to stay away from my spine) I respond very well to the stim which is why i wanted to take that route for my feet. So, I do still take meds, (due to pelvic now)

There is a doctor in Edision NJ who does the hypogastric blocks and he is very familiar with chronic pelvic pain. His injections did not help me; yet he has had success. you can google Doug Spiel. I believe his website is spiedmd.com He is a 'character' for sure, yet knowledgeable. I beieve he did try.

He referred me to Ainsworth Institute for Pain Management in NYC. I am going to have a trial for a DRG stimulator with Dr Corey Hunter on 10/12. He belileves he can help both the pelvic and the feet with the DRG stimulator (not going into spine) it attaches to the ganglion nerve. The DRG is supposed to be good for a specific area of pain and for me it is in rectal and vaginal. He has quite a bit of success with it. He teaches other docs and he said he is the only one in the country that does this now. So i can keep you posted on this for anyone interested. he believes i have an nerve injury due to the infection of the first stimulator and his leads will not be near area where i had a laminectomy to get leads in there the first time.

My injury was so bad that it weakened my rectal muscles. By 2010 I was on hydromorphone and for almost 2 years I kept telling the docs that i was very constipated and concerned. they just kept giving me laxatives. By February of 2012, I cannot describe how horrific the pain was as I could NOT EXPEL a bowel movement. Finally, my neurologist at the time referred me to a colon rectal doc and he did an anal mammontry and i failed it. My muscles about the spfincter weakened and I had no option except to have a colostomy. Since then, the bowel is diverted so i do not have that horrific pressure yet I am left with this horrible nerve pain which makes sitting anyone extremely difficult.

I do know how bad this pain is. I hope you can all find answers. I can keep you all posted as to how I do. I do know someone who does have a stimulator and it is hellping her.

Hugs to everyone suffering....

[Mascaro in reply to ljlmax]

I have pudendal neuralgia. Read your post. What happened with Ainsworth?? Did you do the DRG? Did it work??

[rozamond]

I am so sympathetic to you. I am due for ganglion impar injection for the rectal pain I am very reluctant to go thru with it please keep me posted. And my prayers r with u. 🌞

[ljlmax in reply to rozamond]

And I to you too! I was put under light sedation when I had mine. You can be drowsy afterwards yet you won't feel anything. I hope it helps you !

[boboveena28]

Hey. Any updates on the injection?

[rozamond]

Did not go for injection decided against it. Will try p t the end of December

[joanne2554]

I had botox one time from Doctor Shariati but it didn't help. He referred me to Dr. Fox but there is a 3 month wait for an appointment with Dr. Fox. I chose not to wait and made an appointment with Dr. Vilasuso, one of Dr. Fox's associated at the Tamarac office. Dr. V performed a ganglion impar block. No relief from that procedure. Then I had the radioactive block and that didn't help either. Last month I had a caudal nerve block. I just saw Dr. V this past Tuesday. I told him the caudal block did not help and I am now scheduled for a pudendal nerve block next month. In all honesty, if this next procedure doesn't help, I am going to make an appointment with a urogynocologist at the Cleveland Clinic. That is the same type of specialist as Dr. Shariati. So I guess I will have to be patient and rely on God's good graces. Since we don't live far from each other, I would like to keep sharing our respective progresses.

[rozamond in reply to joanne2554]

If