Anyone out there diagnosed with Pudendal Neuralgia?

Posted by LeighO57 @leigho55, Jun 5, 2018

I have not been on connect for quite a while since I have only recently received a diagnosis (one of many probably to come) I am looking for someone/anyone who has the pain from a surgical injury of sorts to this nerve to talk to. Is there anyone out there with Pudendal Neuralgia on connect? Thank you!

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Colleen Young, Connect Director | @colleenyoung | Aug 25, 2023

In reply to @hennykatz "Any suggestions what to wear under skirts when it gets cold? Leggings seems impossible!" + (show)

Hi @hennykatz, I moved your question to this existing discussion on pudendal neuralgia here:
- Anyone out there diagnosed with Pudendal Neuralgia?: https://connect.mayoclinic.org/discussion/anyone-out-there-diagnosed-with-pudendal-neuralgia/

Wearing tight clothing like leggings does seem impossible. Have you had to give up wearing skirts?

hennykatz | @hennykatz | Aug 25, 2023

I started to have problems in 2019. Slowly it went worse, not only pain when sitting, but also after urinating at night. I wake up frequently due to pain. ice, ice and ice. Finally, after excluding anything gynecology, I went to Mayo pain department. Already had an appointment due to a failed back surgery in 2013 and wanted to talk about a spinal stimulator. Was referred to gynecology?? Got a nerve block - did not work. Then physiotherapy and was advised to see another doc. Did so, she gave me another block, horrible pain for 2 weeks (4 months ago) and unfortunately now worse pain than before block.
This (very nice) doc decided that there were no other options for me.
Life has been hard to deal with, dealing with pain, isolation, etc.
Wardrobe problems, easier in summer. No idea what I can do this winter. Tights?? Don’t think so. Anything else than Gabapentin or Lyrica that can work?
Any suggestions are very welcome.

Askleu

hennykatz | @hennykatz | Aug 26, 2023

In reply to @mikaylar "This is a monster. I sat on a donut for 14 years. The only thing that..." + (show)

What was the anti-seizure medicine? Desperate here!

hennykatz | @hennykatz | Aug 26, 2023

I am dealing with Pudendal Neuralgia. It is an absolute nightmare.
Had a failed back surgery L3/4 in 2013. Years on Lyrica, stopped due to side effects and not helping that much anyway. Now of course back deteriorated since 2013, L 3/5 also not good. Think that’s what caused the pudendal neuralgia. Pain doctor at Mayo suspects that as well. Had 2 nerve blocks - only made things worse. Can’t wear pants, underwear hurts as well, even a sheet touching the area. Walk around in a nightgown when at home.
I realize that I need to socialize with others. Trying to figure out what to wear in fall and winter. Bought some skirts, which is ok for now, but when it gets colder? Don’t think tights or even pantyhose will work out.

hennykatz | @hennykatz | Aug 26, 2023

In reply to @dmburns54 "Hello, I crushed the left branch of the Pudendal N. in 1995. It took 3 years..." + (show)

MRI shows pudendal nerve is not damaged. Doctor at pain clinic here at Mayo Jacksonville diagnosed it as PN.
Pain block did not work - as a matter of fact pain is somewhat worse now. Nothing else she can do. Take Gabapentin and Valium and of course PT.
The whole thing is a nightmare. What to wear when going somewhere? Even driving car is hurting. Sitting on towels under my thighs. Does not help much.

mikaylar | @mikaylar | Aug 26, 2023

In reply to @hennykatz "What was the anti-seizure medicine? Desperate here!" + (show)

I think it was Topamax

healthytoday | @healthytoday | Aug 27, 2023

In reply to @hennykatz "What was the anti-seizure medicine? Desperate here!" + (show)

pot

hennykatz | @hennykatz | Aug 28, 2023

In reply to @healthytoday "pot" + (show)

Tried twice and must have been recommended something too strong. Now afraid to try again.

dorcee | @dorcee | Aug 28, 2023

In reply to @colleenyoung "Hi @hennykatz, I moved your question to this existing discussion on pudendal neuralgia here: - Anyone..." + (show)

what finally worked for me was lyrica in combination with cymbalta. I take 100 lyrica am and pm; and 60mg cymbalta pm.

gila | @gila | Aug 28, 2023

A pure Indica THC tincture under my tongue has helped greatly with my pudendal pain, also helped with my swollen and painful knees. Greatly improved my sleep. My pain dropped over 1-3 months from an 8 to a 2. I use 4 drops at bedtime and 2–3 drops during the day if needed. I don’t feel anything like a euphoria, head rush, or anxiety.