Chronic, severe pain due to pudendal neurolgia

sapphiregirl,
https://journal.parker.edu/article/78018-pudendal-neuralgia-a-case-for-multimodal-chiropractic-intervention
I wish you weren't having pain. You may have already tried chiropractics.

I don’t know if that would help. I’m thinking of acupuncture. I’m doing physical therapy but sometimes I have to cancel my appointments cos I’m in too much pain

Hi Sapphiregirl,
Yes I have PN 24/7
I suffered for 3 years being misdiagnosed and mistreated. My last nerve block left me bedridden. Maybe we had the same bad doctors? I live in FL.

What other procedures have you done?

Hello. Im a male and I believe I have pudendal neurolgia, but haven't yet got an official diagnosis. Have chronic pain that can be anywhere from my anus all the way up into my genitals. Its been a year and a half of trying different things. I've had 2 nerve blocks that did not work. I am on 150mg of lyrica, 3 times a day. Total of 450mg, the most i am allowed. I am also on 60mg of cymbalta. I dont think the cymbata is helping for pain but still going to take it for other reasons. Im not sure if the lyrica is doing anything but I did try to stop it for a couple of days and my pain seemed to worsen so I went back on it. If the lyrica is working it took a while to help. But I'm still in enough pain and discomfort that it is life altering. Lyrica does help me sleep but it increases my appetite so I am gaining weight now. I dont want to exercise because I dont want to aggravate it.

@dcdusek
I’ve had MRIs, pelvic MRI, ultrasound, scans, the neurologist and other specialists only did tests on my spine. Everything came out negative.

@pklouky
I’ve had 3 nerve blocks. The pudendal block made me worse. I’ve been on gabapentin for 2 years. Up to 2800mg a day. No help. Weaning off it. Also take 30 mg of Cymbalta daily. It is an antidepressant which helped me mentally but not physically. Just started physical therapy. Don’t exercise too much. You could make things worse.

I am responding in the hopes that I may be of help to some of you. I have had chronic pelvic pain/ pudendal neuralgia for more than five years. I chased after doctors and diagnoses during COVID, which was doubly awful- so hard to get in to see anyone. My tests were all negative as well. I do have a history of multiple pelvic and abdominal surgeries and 20+ years of low-grade bladder cancers. ( Many cystoscopies and removals of small tumors). At one point, I “begged” my way into a mental health unit at a local hospital as I was out of my mind with pain. (Not suicidal, but hugely depressed). Fast forward, and here is what I have done: 1. If you are female, find a competent urogynelcologist to do an exam. Other doctors are often totally uneducated in this area. 2. Get a Really Good pelvic floor P.T. If you don’t like the first one, change. My third one was the charm. 3. Try to Move every day. I know this is hard, but your body craves movement. I do my PT stretches and strengthening six days a week, long after I stopped going to sessions with her. 4. Get some Mental Health Support. This is Crucial! This condition is so crippling. Chronic pain changes your brain chemistry. Investigate what central sensitization is- your brain keeps sending out pain signals even when not warranted! Get a referral and find a therapist. I got a pain psychologist for six weeks after I was hospitalized and then another therapist later. 5. Start developing a “toolkit”of things that help you feel better. Start small if need be. I practice daily mindfulness (try free app Insight Timer) and breath practice, keep in touch with friends who care about you and reach out (isolation can make it worse), do light yoga (lots on YouTube plus pelvic floor stuff), listen to soft music with headphones, go outside and listen to nature, try a pelvic wand, get a massage, and try acupuncture. All of these soothe my nervous system. I do take cymbalta (which I don’t love to be truthful) and I have compounded Valium suppositories for the really tough days. Practice self-compassion. You didn’t ask for this. It stinks. My heart goes out to all of you. Been there, felt that. Best wishes.

@sapphiregirl you need an mrn of your pelvic floor. It’s different from an mri. An mrn shows nerves. That’s how I found out.

@dcdusek
Thank you! I will.definitely ask for one.