Pundendel pain

[joanne8john]

Hi I have suffered for around ten years chronic pain .I have pundendel nuorthopy.

I have been to see many Consultants.

I take many pain relief tablets . Patches control drug

I have tried many cushions .

I have recently been given a injection type pain relief that you use at night this goes into the vagina and burns at first then settles down

I am waiting to see how often I can use this type of nightly pain relief.

It's a awful pain especially flare ups

Anyone out there who has any pain relief that's working .

[Desperateforrelief]

I have also been diagnosed with pudendal neuralgia. I was on a mixture of pain meds, etc. for a decade. I tried a pudendal interstim, it did help and reduced my pain by at least 50 %. I have since had the interstims removed (both nerves were injured). And have been receiving pulsed radiofrequency ablation of the pudendal nerve every 6 months. This has greatly reduced my pain, almost 100%. At times it is 0. I still have to be somewhat careful, but I have gotten my life back. This summer I was able to garden like I did before PN, after 15 years! Hang in there, there is hope and help.

[Nicky2015 in reply to Desperateforrelief]

Are you in the UK? Where do you get the ablations?

[Desperateforrelief in reply to Nicky2015]

No, sorry. I'm in the US, I am treated in Birmingham, AL.

[Konagirl60]

Ten years with this neuropathy is a very long time. Have you had a guided nerve block? How were you diagnosed with this?

I sit on a medium firm sponge toilet seat. I have for over 7 years. Have you tried that?

What meds have you tried? Amytriptyline ? Nortriptyline?

There are pain patches one can use but not if the pain is mostly vaginal. Can you access Compounded Lidocaine, Baclofen vaginal suppositories?

[Perry1270 in reply to Konagirl60]

I have been on the vaginal suppository for a few years. It certainly has helped a lot.

[69yearoldmale]

You have most likely done this but I was cured by going to a physical therapist that specializes in pelvic floor issues.

[Normie-Orms]

Hi mines only Bern going for 4 years but the only thing that works for me is swimming in the sea (pain disappears) at night I tae cannabis oil 2ml and a antihistamine to make me drowsy. When all this fails i pop a valium sleeping pill and off I go. Not the beat but needs must. I'm seeing a Reiki master who is also is a homeopath and I'm taking her drops. After that I'm going to an acupuncturist as she said the throbbing in my thighs and feet i

s liver and bladder problems. Norm

[RobertVerde]

I have also suffered from Pudendal Neuralgia for many years. I had seen many urologists for this and none had any idea what was wrong with me. Most performed cystoscopy procedures / prescribed Cipro and then told me it was in my “head”.

I finally found a doctor that knew what the problem was the instant I met him. He suggested I see a Physical Therapist that specialized in treating this type of medical issue. Note: this doc has since retired.

I was lucky to find a PT that was located close to me that literally saved my life. I am pretty much pain free for 95% of the time and she taught me how to self-treat when I have flare ups. I go once a month for a tune up to be sure I am OK.

Daily Meds: I take 600 MG of Alpha Lipoic Acid twice a day & 150 MG of Pregabalin in the evenings.

Here are two websites that will help with information:

pudendalhope.info/ - this one also has listings of PT's around the world.

health.usnews.com/health-ne...

I also found a book that helped me as well: “A headache in the Pelvis” which you can find on Amazon.

Good Luck!

[PN21 in reply to RobertVerde]

Glad that you have found the right way. Could you please share the name of the physiotherapist? Does he/she provides online sessions?

I do appreciate it!

[RobertVerde]

Sorry it took so long to get back to you. I have been out of town. here is the list of PT's that work in this area: pudendalhope.info/list-of-p... - where are you located? BG