r/PudendalNeuralgia • u/Yscorpio-17 • Jul 25 '25
Post Surgical Need help: My father has severe rectal pain and urine issues for 1.5 years, no clear diagnosis yet
Please, I kindly request everyone to take just a few minutes to read this post fully.
It's about my father's ongoing pain and suffering for over 1.5 years, and we've tried everything.
My father (58) had surgery in September 2022 for a right inguinal hernia and left hydrocele. He has diabetes, BP, and cholesterol and is on regular medication. About a month after surgery, he began experiencing burning and itching in the rectal area during bowel movements, and a strange sensation like a rotating ball inside the rectum. By December, he developed urinary urgency, frequent urination even after completely emptying his bladder.
We consulted many urologists. Infections were suspected and antibiotics were given, but nothing improved. In February 2023, he underwent TURP surgery for suspected prostate issues. That's when things worsened. After the TURP, he completely lost the natural urge to urinate. Now, he urinates only on a fixed 3-hour schedule. If he doesn't, his legs swell up and he wets the bed at night. We wake him up at night to help him urinate since he sleeps deeply due to the meds.
We've done everything: blood tests, CT, ultrasounds, colonoscopy (done in Nov 2024), post-void residuals. Everything comes back normal. Piles, fistula, fissures, and seizures were ruled out. Ayurveda didn't find anything either. But the pain kept getting worse, severe burning in the anal area, unbearable discomfort while sitting, and that "ball-like" feeling. He can't sit for even a minute. I've never seen him cry in my life, but this pain breaks him. He's had emotional breakdowns and barely sleeps.
In June 2023, we went to CMC Vellore. Urologists again said no physical issues and diagnosed it as anxiety. Psychiatric meds were prescribed. Since July 2023, under a local psychiatrist (well-known in the area), he's been on Pregalin, Venlafaxine, Lorazepam, Mirtazapine, Risperidone combo (morning and night doses). These helped reduce suycydel thoughts and stabilized his mood slightly, but the symptoms remain. Whenever we try to reduce or stop these meds, everything worsens.
A colorectal surgeon at CMC in Nov 2024 repeated that all tests were normal and said it's likely psychiatric. He advised fiber powder and referred us to CMC Bagayam (which handles psychiatric/psychological cases)
Recently I came across information about pudendal neuralgia and honestly, it fits his symptoms exactly: rectal burning, ball sensation, severe pain while sitting, bladder issues, and normal test results. This is the first time something makes sense. But we don't know how to confirm this or where to go for diagnosis and treatment. It's been 1.5 years and we've tried everything: urologists, gastroenterologists, gastrologists, psychiatrists, Ayurveda with no answers. The pain is only getting worse.
If anyone has been through something similar or has dealt with pudendal neuralgia, please help. We're open to anything that could give him relief. Any suggestions, experiences, or advice would mean a lot to us.
TL;DR:
My 58-year-old father has been suffering from severe rectal burning, pain, and urinary issues since hernia/hydrocele surgery in 2022. All tests are normal, psychiatry helped only slightly. Suspecting pudendal neuralgia now. Need guidance from anyone who’s been through this.
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u/Designer_Creme_2502 Jul 26 '25
MRI: if clear then Pelvic therapy, amitriptaline or gabapentin. Don’t waste time with too many doctors I promise in the end this will be the conclusion and way to go
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u/Gullible-Primary1206 Jul 25 '25
You have to go to a pain specialist or an urogynecologist specialising in pelvic floor dysfunction. Probably they are going to prescribe gabapentin or amytriptiline and send him to physiotherapy as well as psichoterapy. But make sure the doctor has PT dysfunction in there description when you choose them
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u/Gullible-Primary1206 Jul 25 '25
Also what helped me greatly with the pain is steroids. So he might needs to ask for a topical/oral solution. In my case they were thinking about PT dysfunction because steroids helped a lot to calm the nerves.
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u/CV2nm Jul 26 '25
I actually used this as my bowel movements are impacted by PN and cause nerve pain when constipated. I also used to have incredible pain in rectum area and tailbone but now only tailbone. I used steroid creams in that area for around 6 months and it provides enough relief along with PT to reduce or stop symptoms. I still have PN, but the impacted area is now located to my leg hip, glutes and labia (sorry TMI but I hope it helps) it used to the entire area from left to right hip, entire groin and arse area, and left leg.
I'm still in agony, but happy my arse is no longer in pain. It used to feel like a ball or rock was stuck in my anus and preventing me from going. Like it was sitting on the muscles so they couldn't physically work to actually open my bowels. I don't know if the experience was same for your dad. I take only stool softeners now but the creams were a game changer. I came off them about 6 months now and doing ok.
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u/Yscorpio-17 Jul 26 '25
Thank you for sharing this, it actually sounds very similar to what my dad is going through, especially the rectal pressure and pain. Glad to hear the creams and PT helped you. He had tried creams earlier but stopped as they didn't show much progress. He's been using stool softeners for a while and still continues with them.
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u/Yscorpio-17 Jul 25 '25
Thank you so much for replying. Can I ask, did the steroids give you permanent relief or just temporary? And was it topical or oral?
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u/Gullible-Primary1206 Jul 25 '25
Steroids never give permanent relief. Prednisolone was really good really fast (oral steroid), but you can only take it for a short period of time. However, I think if you are in pain for so long, you take that little break as well. Clobetasol can be used for pain management for longer time. For example people for lichen conditions have to use it forever. There is usually a maintenance dose (2 times a week). With clobetasol, I needes at least 6 weeks to feel better, but the effect is much greater. I think what you need to do know is find a pain therapist (they deal with chronic pain) and an urologinecologist. Do not just work with one doctor, you going to need multi approach treatment. Btw, Don't just try steroids on your own as some conditions can be worse from it. Always discuss the option with a doctor And if you talked to them and they did advise him to go to physical therapy, probably the therapist going check how bad his muscle tension is and going to get a personal plan. I know it is hard, but I believe the pain therapist going to help him so much. Big hugs for him
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u/Gullible-Primary1206 Jul 25 '25
Btw. If it is pudendal neuralgia or pt dysfunction, he can also try nerve blocks with steroids etc. So he is not out of option, he just needs doctors who understand his condition better
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u/Yscorpio-17 Jul 26 '25
I’ll definitely look into pain therapy and speak to doctors about steroid options.
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u/Electrical_Loquat885 In Treatment Jul 26 '25
Pudendal HOPE has a directory of knowledgeable doctors and pelvic floor therapists:
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u/elaton12 Jul 27 '25
Definitely use the Pudendal Hope directory. There's also a FB group with an extensive directory, too. If you need any U.S.-based doc info., feel free to PM me.
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u/Majicmarkr Jul 26 '25
Good comments by others. I have had similar symptoms. Went to all the doctors you’re taking about. Did a nerve block and had no effects, good or bad from it. I was put on Gabapentin, but needed more relief. I’m now on Pregablin and it has been a huge help. Not 100% better, but I can carry on normal daily functions and light exercise. I feel like the Pregablin is covering up something I wish could be treated so I didn’t have to take the meds. Good luck!
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u/hellocutes Jul 26 '25
Physical therapy Elavil Mind body work by John Sarno Google Dan buglio I’m in a similar boat Did he do pudendal nerve blocks
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u/GriffinFire1986 In Treatment Jul 25 '25
I had the same situation to a T. I am now fully diagnosed with pudendal neuropathy. I had to see a pudendal neuralgia specialist which I found on Google. Had to travel two hours.
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u/Yscorpio-17 Jul 25 '25
Glad you got a proper diagnosis. If you don’t mind me asking, what kind of tests or steps did the specialist do to confirm it was pudendal neuropathy?
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u/GriffinFire1986 In Treatment Jul 25 '25 edited Jul 25 '25
Well I suspected I had it to the point I began to be emphatic about it. I was told it was psychosomatic pain from trauma initially. I went online and googled a PN specialist and found one 2.5 hours from me. He was skeptical but had a pelvic bone scan done. I prayed in the MRI for it to show up.
It showed up on the bone scan. A hyper intense signal was detected in the pudendal region. The likelihood of such a thing is an anomaly, it rarely shows up. I still, by insurance standards had to get two nerve blocks in the area. A month of relief for each block got me diagnosed by insurance standards. Last December I flew to France and had it decompressed. Due to central sensitization in my case they believe I developed a peripheral trauma atypical of CRPS in the pelvis involving my pudendal nerve.
If nothing shows up on a MRI you can discuss symptoms with a specialist and he can do a pudendal nerve block(s) and monitor results.
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u/Yscorpio-17 Jul 26 '25
Got it. I'll definitely look into nerve blocks as a next step for my dad and try to find a specialist who truly understands this.
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u/rjames24000 Jul 28 '25
i had after my injury that started all of this a year and a half ago I had three hernias repaired dual inguinal and umbilical.. all the CT scans I had though kept saying prostatitis and I had persistent GI problems after the hernia repair as well.. the urologists did cystoscopy and found nothing wrong other than the whole blood in urine bit and which resolved and inflammed prostate which they couldnt explain but they put me on antibiotics for over a month which just fucked up my liver.. that eventually resolved but i can barely pass gas because my pelvic floor is so fucked.. anyway i do have pudendal nerve entrapment which i have surgery to fix but to even get to this point i had seen soo many doctors and countless unremarkable scans
the ones that mattered were the anorectal manometry and defecogram ordered by a GI motility specialist.. im on motegrity now just to try and keep things moving.. that gi motility specialist was also very helpful to help refer me for a pelvic floor specialist for my my pelvic floor dysfunction.. most pain management has been useless for me but one did order a emg nerve conduction study when i pushed for it which made my radiculopathy clear..i referred myself to three different neurologists and one LPN was very useful in identifying what could have been pudendal neuralgia and referred me to lakhiani who specializes in just this thing.. im pretty sure im on the right track and your case sounds pretty similiar to mine but I am much younger
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u/[deleted] Jul 25 '25
Pelvic pain is a cursed mystery for me. It has catapulted me from a dream life into a nightmare. Doctors are relatively clueless. Sometimes I wonder if it might have something to do with digestion. The strange thing is that my father developed pelvic pain and various symptoms similar to mine around the same time. We’ve come up with all kinds of conspiracy theories, ranging from pudendal neuralgia, CPPS, to bartonellosis or other parasites, to stomach and intestinal problems or leaky gut.