Need advice please

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
Post Reply
Sinclair
Posts: 3
Joined: Mon Sep 07, 2015 2:07 am

Need advice please

Post by Sinclair »

New forum member and hoping to get some advice.

I googled "pins and needles feeling in vulva" and found your site. I think that I have pudendal nerve pain. For a couple of years now I have had this feeling. Sometimes it is on both sides, but Usually just the right side. Sometimes it is that whole area: vulva, labia, top inside of right thigh, urethra spasms. Sometimes it feels like creepy crawly sensations. It is most uncomfortable and lately has become painful.

I have had bladder issues including bladder control for 25 years. Medicines work at first but then quit working. 2 urologists have said I almost meet all the requirements of interstitial cystitis. I have bad inflamation inside my bladder. Watching what I eat helps a lot. But still have the burning bladder a lot and leak urine, urge and frequency, and have bad bladder spasms. I've had bladder pain so long I have learned to just tolerate some of the pain.

I have had stomach and bowel problems for months now. Had all the tests done and nothing found. Burning and pain from my stomach down to my bladder. Have small hernia and stomach spasms, acid reflux. Had this 2 years ago and finally got it settled down after 3 months with Nexium and Trazodone for the spasms and eliminating all offending foods. But then it all started up again 4 months ago. Have been really suffering. Quit taking all my arthritis meds, been on very bland diet for months, sleep with elevation of upper body, eat early dinner and don't lay down for 2-3 hours. Tried pantoprozole, lanzoprosole, plus famotidine, then Nexium again, lots of Tums. Nothing has worked and it just keeps getting worse. The pain really increased last week. Last Monday the doctor said he thought it was my upper intestines causing me problems, because the endiscopy showed no problems nor did the colonoscopy but neither of those tests look at the large intestine. He said that old scar, scarring tissues, and adhesions were probably involved. (I have had 2 full c-sections (abdominal cut) , hysterectomy, and removal of fibroids and endometriosis) and told me to start taking Miralax and probiotic which I did. He said to give it two weeks. See below for what else he wanted me to take but did not tell me.

Then it all came to a head this past Friday when my bladder started hurting real bad too. It felt like there was a hot iron stuck to my bladder. I felt like I had a red hot acid poker stuck up my bladder and inside up to my stomach. I was in such pain that I went to the ER on Saturday. My blood pressure was 185/90. Of course they didn't find anything in the tests they ran (blood, urine, and contrast Cat scan). But they did give me some pain meds to get me through until I can see doctors. (Lortab, Lyrica for nerve pain) Of course the doctors are closed today for Labor Day. The pain meds did nothing for my pain, didn't touch it the rest of the day. I have had kidney stones and the pain was almost as bad as that. When my husband picked up the pain meds, there was another prescription waiting for me called Donnatal (sp?). The doctor had called it in but nobody had told me. I could have been taking it for 5 days before I had to go to ER. On Sunday I woke up and felt so much better. Did not need a Lortab until last night. Still in some pain but nothing like before. I don't know if it is the Lyrica or the Donnatal or both that has made the difference. I have only been taking them since Saturday afternoon. Anybody have experience with those 2 meds? Hopefully I can see my regular doctor and urologist tomorrow.

My main question is can pudendal nerve pain cause bladder and intestinal pain? Since I have had the stomach and bowel pain for months I tend to think that must be separate issue. But maybe the bladder pain is being caused by the pudendal nerve issues.... Why did it all come together on Friday and cause me extreme pain?

Thank you for any help you can give me. Thanks for listening/reading.
Sinclair
Posts: 3
Joined: Mon Sep 07, 2015 2:07 am

Re: Need advice please

Post by Sinclair »

Anybody? Please help
solarmom
Posts: 46
Joined: Sun Nov 30, 2014 10:17 pm

Re: Need advice please

Post by solarmom »

Hi
I am not a moderator, just a member, but so sorry you are in such pain.
I take gabapentin ( similar to lyrica) and can confirm that it took about a week to
take effect and relieve some of my rectal pain.
you may want to search for info on IC and pudendal issues in the search bar.
Sinclair
Posts: 3
Joined: Mon Sep 07, 2015 2:07 am

Re: Need advice please

Post by Sinclair »

Thank you I'll do that
nyt
Posts: 1165
Joined: Sun Oct 31, 2010 3:24 am

Re: Need advice please

Post by nyt »

You might want to ask for a referral to a pelvic floor PT and see if part of the problem is a tight pelvic floor. They can also work with you on bladder training and see if that helps. What did your urologist think? Do you have a diagnosis of IC?

Hernias can cause all kinds of problems. It was a while back but there was an individual on the forum who had PN symptoms but they had a hernia and when the hernia was repaired they were fine.

As you mentioned all your abdominal surgeries there is always the possibility of adhesions playing a role in some of your pain but one can never know for sure.

Lyrica usually takes a few days to start working. Donnatal is an anticholinergic and is usually used for irritable bowel but because it is an anticholinergic they might have used it for your bladder as many patients find anticholinergics helpful for bladder pain and spasms.

Hopefully, you are feeling much more yourself and the pain is under control. Keep us posted.
2/07 LAVH and TOT 7/07 TOT right side removed 9/07 IL, IH and GN neuropathy 11/07 PN - Dr. Howard
6/08 Obturator neuralgia - Dr. Conway 11/08 Disability, piriformis syndrome - Dr. Howard
4/09 Bilateral obturator decompression surgery, BLL RSD - Dr. Howard
9/10 Removed left side TOT, botox, re-evaluate obturator nerve - Dr. Hibner
2/11 LFCN and saphenous neuralgia - Dr. Dellon 2/11 MRI with Dr. Potter - confirmed entrapment
5/11 Right side TG - Dr. Hibner 2012 Left side TG - Dr. Hibner
User avatar
Violet M
Posts: 6679
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Need advice please

Post by Violet M »

Sinclair, just wanted to add a couple things to what the other gals said. The pudendal nerve innervates the urinary sphincter and irritation of this branch of the nerve can be associated with urinary frequency or burning. Many PN patients have complained of irritable bowel syndrome (IBS) symptoms but I don't know if there is any clear association between PN and IBS.

Have you had an MRI to rule out any pathology that might show up on imaging? I don't know if the imaging would give you any definitive information on whether adhesions or scar tissue from previous surgeries are a culprit in causing your symptoms. One of our previous forum members, Hermajesty, had a lot of bladder symptoms that were associated with tarlov cysts. She also had some pelvic misalignment issues. You may want to see a manual therapist to check if there are any musculoskeletal issues that could be contributing to your pain.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Post Reply

Return to “WELCOME CENTER”