Successful treatment for pudendal neuralgia/neuropathy in the US

Hello everyone 🙂

I am posting this to share my successful outcome, hoping to help anyone currently suffering through what I endured for 14 years. My diagnosis was pudendal neuropathy—specifically, a unilateral injury to the rectal branch of the nerve. The rectal pain started after an old fall onto my tailbone combined with a stomach virus, preceded by years of cycling without a proper saddle. Since then, the pain was most intense after bowel movements and worsened significantly while sitting. Over 14 years, I consulted countless specialists, mostly proctologists, who almost exclusively diagnosed me with levator ani syndrome. Despite my best efforts, there was no real progress. By last fall, the pain became unbearable; I couldn't sit or lie down, leaving me constantly on heavy opioids that offered no relief. I was housebound and bedridden, and suicide felt like my only remaining option.

Since international treatment wasn't an option, I had to exhaust every possibility here in the States. Eventually, I found Professor Duje Kovačević at the Mayo Clinic. He correctly identified my diagnosis and symptoms and proposed surgery as the solution. As difficult as it was to believe a quick fix existed for such a massive problem, I agreed because living in that state was no longer an option. In early February, the damaged rectal branch of my pudendal nerve was removed. After a painful ten-day recovery, the pain began to subside. A month later, I was pain-free, and I remain so today. 🙂

I am sharing this here so that information regarding Professor Dujo Kovačević’s success in treating pudendal neuralgia becomes public and easily searchable via Google. This is especially vital for those enduring these horrific pains and facing misunderstanding from doctors, yet unable to afford expensive treatments abroad in places like Nantes, Belgium, or Arizona. It is now possible to treat this condition in Washington, D.C., covered by Medicare. This saved my life, and it can save others too. That is significant news.

I am not very tech-savvy or active online, so I will leave my phone number for anyone who needs more information or thinks I might be able to help. I would appreciate it if this thread stays active so it isn't forgotten.

Best regards,

frozenraven11

Anyone else here been through this surgery? Please, drop your stories and let me know how it actually went...

Jack Ward12 said:I’d love to hear from any other patients out there who have gone through this surgery...

Hey there.
I've been dealing with this for a year now. I've bounced between specialists and endured endless tests before finally getting diagnosed with pudendal neuralgia. I even tried calling this woman who supposedly had a successful surgery with Dr. Kovacevic, but I couldn't get a hold of her at all. I actually went to see Dr. Kovacevic myself, and honestly? He didn't impress me one bit. After waiting forever in the lobby, he just brushed me off. I was debating whether to pull the trigger on surgery with him, but after reading your post, I'm officially out. I'd really appreciate it if anyone could reach out—we're a small group, but we need to talk. In America, it feels like doctors don't have the expertise or even the interest to deal with our specific issues. Thanks a lot. If you're up for chatting, let me know. Cheers.

Jack Ward12, I am seriously sorry you had to deal with that outcome after surgery. Honestly, I’ve spent way too much time reading stories from people with pudendal neuralgia where the operation just made everything worse—it's pretty scary. Some of them even went to the top-tier medical centers in the US and still ended up in this spot. I guess it feels like we don't really have enough specialized experts here in America who truly get this specific issue. There are doctors who claim they know what they're doing, but—unfortunate as it is—patients like us often end up being their guinea pigs. Good luck with the recovery! I'm really hoping things start looking up for you and that the pain eases off even just a little bit.

redotter95 said:Jack Ward12, I am genuinely sorry things turned out this way after your surgery. Honestly, I’ve read too many horror stories from people with pudendal neuralgia where surgery just made everything worse. Some of them even went to the top-tier medical centers in the world and still ended up in a bad spot. It feels like there aren't enough specialists in America who actually grasp this specific issue. You get doctors claiming they're experts, but we're really just guinea pigs to them. Good luck with the recovery. I truly hope you find some relief soon.

I don't get why you feel that way. Do you have actual experience with that, or are you still dealing with the same symptoms we're talking about? I saw Dr. Astman myself, and the nerve block I got left me feeling way better than before. I'm headed back for another one in a month, and if that doesn't work, then I'll look at surgery. There isn't much choice; you can't live a normal life like this. And yeah, it's true that nobody in America seems to know what they're doing with this. I've been through countless doctors and none of them had a clue about this type of illness. Sadly.

If you're looking for experience treating pudendal neuralgia, Professor Roger Robert’s team in Nantes, France, has probably seen more than anyone else in Europe. At least when I was digging into this a few years back, they had the best track record... Good luck to everyone.

Hey everyone,

Since we're talking about decompression surgery, I figured I’d share my own nightmare experience with this brutal syndrome and the sketchy surgery performed by Prof. Smith. It might save someone else from the mess I'm in.

Look, don't treat this surgery as some "quick fix." Only consider it if your quality of life is literally at zero and you've actually exhausted everything else in this order:

1. Lifestyle changes
(Stop sitting so much—get a damn ergonomic cushion and a standing desk if you can)
2. Physical therapy
3. Medication
3. Nerve blocks
4. Patience. Just pure patience.

After dealing with every single devastating symptom of Neuron neuralgia (I saw about 10 specialists, had 3T pelvic and lumbar MRIs, EMGs, SSEPs, etc.) and reaching the point where I couldn't sit on a special cushion for even a few minutes without intense pain, I decided to go for bilateral transgluteal decompression with Dr. Smith. I was mostly motivated by a post from restlessbadger2 regarding her own procedure...

Fast forward six months post-op: things haven't just failed to improve—they're three times worse. On top of my old symptoms, I've developed new urinary issues and sharp pains in the scrotum area, specifically the bulbospongiosus muscle... not to mention all the original perineal pain and then some.

Post-surgery, Prof. Smith basically ghosted me. He straight-up denied that my new symptoms were linked to the surgery (his first follow-up lasted maybe two minutes), then tried to pawn me off on urologists or suggest "burning" the nerve as the next step—as if those are the only two options on the table for treating PN.
(I later found out from other experts that nerve ablation is super risky because when the nerve regrows, it can form a neuroma that hurts even more, not to mention the risk of incontinence)...
After Dr. Smith ignored my emails for ages while ignoring my new complaints (only mentioning them briefly in his notes), he finally gave me a reluctant, two-word reply admitting he performed the decompression in the Alcock's canal and sacrospinous ligament—something he conveniently left out of my discharge papers. That is incredibly unprofessional and vital info to hide.
My life is completely ruined now. I can't sit at all, and the pain is constant 24/7 despite being on the strongest meds available.
Beforehand, the doctor promised nothing could go wrong. He actually laughed when I was cautious and asked if there were risks. God, I was naive...

If you want to gamble like I did with a surgeon who, in my opinion, is massively overrated (he's probably fine at his specialty, but clearly lacks the specific training and patient experience needed for pudendal decompression)... that's on you. I'm not responsible for your choice.

I'm going to try to reclaim my life by seeking treatment in nearby Europe with Prof. Oscar Aszmann.

My advice:

Get a 3T pelvic MRI done at the Neuron clinic for about $600 and then go see Prof. Aszmann for an initial consultation, which is around 300 bucks. Do that before you jump into decompression or nerve burning with Dr. Smith.

I'm posting this because I took a disastrously wrong turn with my treatment, and I want to make sure nobody else follows my path.

Best,

Stay strong, PN warriors! Don't give up.

P.S.
The Pudendal Info forum and the Facebook group Pudendal Hope are actually great resources.

Laura Young50 said:I’m honestly not sure why you all feel that way. Have you actually dealt with this personally, or are you still struggling with the exact symptoms we're discussing? I also saw Prof. Astman, and he started me on a nerve block, which has made me feel significantly better than before. In a month or so, I'll try a second one, and if that doesn't work, I'll have to go under the knife. There isn't much choice, really—you just can't live a normal life with this condition. And frankly, it feels like nobody in America truly understands what we're dealing with. I've seen countless doctors who haven't the slightest clue about this specific type of illness. It's quite unfortunate.

Lorena, how are you feeling lately? Did those blocks end up helping, or did you eventually have to have surgery?

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Regarding that first post from Lorena, looking back at it now, it almost feels as though Dr. Duje himself wrote it, head and shoulders above the rest. 🙂

He’s highly regarded in his field... specifically regarding surgeries for the small and large intestines in patients dealing with Crohn's disease, ulcerative colitis, and similar conditions. Unfortunately, it seems to me that he overextended himself when he dove headfirst into the messy undertaking of trying to treat PNa using American methods.

So, don't just think about it once or twice—think about it a hundred times before you decide whose hands to put your life in. After all, that single decision will dictate the entire course of your future.

restlessbadger2 said:Laura Young50, how are you holding up? Did those blockers work out, or did you end up going under the knife?

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Looking back at that first post by Lorena, honestly, it reads like it was written by Dr. Smith himself. 🙂

The guy is highly regarded in his field... specifically when it comes to bowel surgeries for people dealing with Crohn's, ulcerative colitis, and similar issues. But it looks like he bit off more than he could chew when he jumped headfirst into trying to fix PNa using these local methods.

So, don't just dive in. Think a hundred times before deciding which surgeon to trust, because that choice dictates the rest of your life.

Please get in touch. I sent my cell number over to you, Laura Young50.

Hi there.

I’m looking to connect with anyone out there currently dealing with PNa...

It’s been tough trying to track down people actually living through this topic... I haven't had much luck reaching folks like Laura Young50 or Jack Ward12...

If you're willing to talk, please just shoot me a private message.

Keith Chavez2 said:Hey.

I'm looking to connect with anyone dealing with PNa.

I can't seem to reach the regulars here... Laura Young50, Jack Ward12, etc.

Shoot me a DM if you're interested.

Are you actually Fiko?

frozenraven11 said:Hey everyone 🙂...

I’m jumping on here because I finally, finally finished my nightmare of a journey, and honestly, I just want to help anyone else out there who’s suffering through the same hell I lived through for 14 whole years... It turns out my diagnosis was pudendal neuropathy—basically a one-sided injury to the rectal branch of the nerve. This whole mess started after some old fall on my tailbone combined with a nasty stomach bug, which was preceded by years of riding my bike without any kind of padded seat protection, you know? Ever since then, the pain would hit hardest right after using the bathroom, and sitting down was just pure torture. For 14 years, I bounced from specialist to specialist, mostly proctologists, but they kept slapping me with "levator ani syndrome" diagnoses... despite everything I did to fix it, nothing worked. By the last stretch, specifically starting last fall, the pain got so unbearable that I couldn't even sit or lie down anymore... I was basically living on heavy-duty opioids that didn't even touch the pain! I was stuck at home, trapped in bed, and honestly, suicide felt like the only way out left...

Can someone leave a number where those of us dealing with the same thing can reach out?

I didn't have the cash to fly overseas for treatment, so I had to exhaust every single option right here in the States. Finally, I ended up seeing Professor Duje Kovačević over at the Mayo Clinic, and he actually recognized my symptoms and the real diagnosis, offering surgery as the solution to the pain. As much as it was hard to believe that such a massive, life-altering problem could have a quick, simple fix, I agreed to the surgery because living like that just wasn't an option anymore... At the beginning of February this year, they removed the damaged rectal branch of my pudendal nerve, and after about ten days of a really rough recovery, the pain started backing off. A month later, I was totally pain-free, and I still am today... 🙂

The reason I'm posting all this here is because I want people to know that Professor Dujo Kovačević successfully treats pudendal neuralgia, and I want that info to be easy to find on Google for anyone suffering through these terrifying pains while doctors just stare blank at them... especially for people who can't afford expensive treatments abroad in places like Nantes, Belgium, or Arizona. Now, this condition can actually be treated right here in Washington, D.C., and covered by Medicare. It literally saved my life, and it could save others too, which is huge news for so many people...

Since I'm not exactly a tech wiz and I'm not online much, I'll leave my cell number here so anyone who wants more info or thinks I might be able to help can get in touch. I’d love to keep this thread active so it doesn't just vanish into thin air...

All the best,

Loredana

Dear Loredana, can you leave a number where we can contact you, those of us with similar or identical problems?