Pundendal pain

[Rodge1234]

I got diagnosed to have pundendal neuralgia 11 years ago after getting chylamidia, I’ve tried different medications, I had sacral mapping once and had 4 steroid blocks and 2 pulse radio frequency treatments. They don’t help anymore I’m suffering with strong urgency , and wet sticky burning anus /scrotum can anyone help it’s really depressing. Is there anything that has worked? Many thanks

[Antinomy]

It may not assist further but my pudendal neuralgia has been made tolerable at night enabling sleep with Pregabalin capsules (200mg) taken 3x during the night.

[Rodge1234 in reply to Antinomy]

thanks for reply, how do u find taking pregablin? Do u get bad side effects? Does it help stop urgency, and hot burning around genital area ?

[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 at the Cleveland Clinic 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.

Here are two websites that will help with information:

pudendalhope.info/

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!

[RobertVerde in reply to RobertVerde]

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

[Rodge1234 in reply to RobertVerde]

thanks for reply did u get pundendal neuralgia from chylamidia. It has ruined a lot of my younger life, I’m now 37 and running out of ideas. Regards to physical therapy is there a certain specialist who’s main work is pelvic pain I live in uk. Also do u think pregabalin is a good drug to help?do u get bad side effects?? Thanks

[RobertVerde in reply to Rodge1234]

I'm not sure what caused it - I had a miserable 6 or 7 years and finally figured out what I had and even better found someone to help. For me the benefits of Pregabalin outweighed the side effects. I live a pretty normal life now. If you look at the site I sent it shows PT's in the UK: pudendalhope.info/node/60#U...

[Rodge1234]

ok thanks, did u have similar symptoms to wat I have? The urgency for toilet all time, hot burning sticky sensation around anus and scrotum. Massive flares

[Antinomy]

Hi Rodge, as indicated I take three x 200mg Pregabalin capsules at night, one when I go to bed, another two at different times during the night. This negates pudendal neuralgia pain and lets me sleep. Thank you Pregabalin! I don't take any during the daytime as 600mg is a maximum 24hr intake. The only side effect is a slight dizziness, so I have to be careful turning round! Hope this helps.

[pebbless]

Hi

I feel your pain just reading bless you. Are you on any medication. I was on nortriptyline 70mg per day but now im in PREGABALIN And they work.

Im al on 20mg of antidepressant citalpram and that has litterly changed and saved my life

Warm bath

Ice pack and night

Pelvic floor excersises

Good luck