Joining you all

[Hopingbetterdays]

36M. Not sure what to do anymore, I have not been diagnosed but all roads point towards possible pudendal. Severely depressed as of late as I have tried so many different things.
My main symptom is burning of scrotum when sitting. Sometimes the anus and perineum but most of the time just the scrotum. Pain only when sitting, standing or lying down burning goes away shortly after. I feel perfectly fine in the morning if worse as the day goes on if I can refrain from sitting all day I can have a good day. But I can not never sit again.
I am about a year and a half into this hell, it has taken such a toll on my mental health I actually broke down crying on the floor last night. My 5 year old comforting me saying “dad it’s okay take a deep breath and let it out” literally broke my heart.
I have seen many different specialists from dermatology, multiple urologist, primary, walk in, er etc. many blood tests, koh test, ultrasound of scrotum, ct of pelvis.
I have tried antibiotics for months as one urologist thought prostatis so I was on Bactrim for 6 weeks, doxycycline for two months, have tried oral antifungals, oral steroids, antihistamines etc etc the doctors just don’t know. I am 5 days out of inguinal hernia repair/spermatic cord lipoma. I decided to have the surgery because I am so desperate and though maybe it was causing my sitting problem although I still can’t sit!!! It’s heart breaking no one knows what I am going through I try to be strong for my family but I am fighting this not only mentally but physically. I feel like a lot of the time I am “there” but I am not mentally “present” it’s making me feel like a horrible husband/father when I just want to give them the best lives. I literally don’t know how I can live like this anymore.

Having the surgery and not finding relief was the last nail in the coffin for me. Idk what to do or where to turn it is so depressing. Doxetine/celebrex do provide some relief but sitting is still a no go. I can not find any local doctors knowledgeable on pudendal or any actually willing to help me. Any advice or guidance would be amazing I am so desperate at this point. Located in Connecticut

[aussie_surfer]

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[MazeWolverine]

I feel you! Please join the Pundunal Hope FB group as they have a more updated list of doctors who can diagnose PN. For men it’s not many but Conway can get you started hems in NH and there are some in NYC. Dr Hibner will do a virtual consult for $500.

Can you give us more information? How it started, suddenly etc.

[Hopingbetterdays]

Hi mate, as a similar aged male, I deeply understand about the emotional toll of this condition. It is a condition that impacts upon the most basic of human interaction, that is, the ability to “take a seat”.

Have you had any specialised high strength imaging? Would you be able to see Dr Hollis Potter in NYC for a 3T pudendal nerve MRI?

Have you been evaluated by a good pelvic PT? Or pudendal specialist physician/surgeon?

Am sending healing light.

Thanks brother, I hope we can make it out of this hell. I have fought so many demons over the past year and a half. The only imagine I have had are Doppler ultrasound of scrotum, and ct with contrast of pelvis. I have not seen PT yet but I do have an appointment scheduled, I am not excited about “internal work” actually pretty scared but I am so desperate. I am trying to get a referral to pain management Dr. Barreveld in MA as she is only one somewhat local that I can see has experience with this condition. The trip down to NYC would be brutal for me but I think I will have to look into this hopefully my primary is on board with referral maybe she will know exactly what to look for and find something else. I just feel like any of the doctors I have seen so far dismiss me pretty quick because it is “invisible pain” it is heart breaking.

[Hopingbetterdays]

I feel you! Please join the Pundunal Hope FB group as they have a more updated list of doctors who can diagnose PN. For men it’s not many but Conway can get you started hems in NH and there are some in NYC. Dr Hibner will do a virtual consult for $500.

Can you give us more information? How it started, suddenly etc.

I really wish I knew how it started! Just kind of came on, I have played so many scenarios in my head or tried different things to rule out different issues. That is my main problem is it seems a lot of “pelvis health” is geared towards women. And the specialists I have seen group them it into different generic idiopathic conditions related to their speciality but do not seem interested in helping me find the root cause. Urology-chronic prostatis..dermatology-red scrotum..different urology-pelvis dysfunction. I have seen Dr. Hibner name a lot I am just kind of skeptical of virtual because how can they give me a full exam etc.

[MazeWolverine]

I feel you! Please join the Pundunal Hope FB group as they have a more updated list of doctors who can diagnose PN. For men it’s not many but Conway can get you started hems in NH and there are some in NYC. Dr Hibner will do a virtual consult for $500.

Can you give us more information? How it started, suddenly etc.

I really wish I knew how it started! Just kind of came on, I have played so many scenarios in my head or tried different things to rule out different issues. That is my main problem is it seems a lot of “pelvis health” is geared towards women. And the specialists I have seen group them it into different generic idiopathic conditions related to their speciality but do not seem interested in helping me find the root cause. Urology-chronic prostatis..dermatology-red scrotum..different urology-pelvis dysfunction. I have seen Dr. Hibner name a lot I am just kind of skeptical of virtual because how can they give me a full exam etc.

Having done the consult, this is what he will do

1. Listen to symptoms and explain the nerve
2. Tell you he wants to isolate the muscles and suggests pelvic floor PT and perhaps botox.
3. If not, he suggests stem cells, then will consider surgery I believe if entrapment is thought of. He is a good surgeon.

1. Honestly at your point, I don't think the muscles are irritating the nerves. It seems unlikely but you can consult with a good pelvic PT (Herman and Wallace Website) that treats men to check for tight pelvic floor.
2. You can also consider pelvic MRN in NYC with Dr. Potter and I would look at additional pain medicine - including amitriptyline.
3. It honestly sounds like PN 100%, but you can also get a diagnostic nerve block in NYC most likely. Check the FB group and forms.
4. Also a cushion! Please get U cushion that takes pressure off the middle.
5. Don't loose hope. Know this - Dr. Ken Peters in Michigan is now basically devoting 100% of his time to developing new implanted PN stimulators. The tech is moving fast. There will be help in the future, it is coming. Be happy you got married and had a kid before this started. I'm a single 28M and not sure what I'm gonna be doing here.

[Violet M]

Hello Hoping for Better Days,

Sorry you are having such a rough time. You might want to check with Peter Phillip (listed here: https://www.pudendalhope.info/usa-physi ... onnecticut)
to see if he knows of any doctors not too far away who can do pudendal nerve blocks and maybe you could try a pudendal nerve block for diagnostic purposes. He might be able to give you additional advice.
https://www.philipphysicaltherapy.com/about
https://hermanwallace.com/blog/pelvic-p ... ter-Philip

You are an awesome dad to have raised a son who can empathize with you like that. Stay strong -- you will figure this out and there is a good chance with the right treatments you will get better.

Violet

[stephanies]

I am so sorry you are going through this. Many years ago I developed PN when my son was 3 years old and I can appreciate how difficult it is to be a present parent while managing pain. I always think with pelvic pain it is important to request both lumbar and pelvic MRIs from a doctor. They can rule in or out spine issues that could be contributing to the pain. A pelvic MRI can look for Tarlov Cysts, pelvic congestion, and hip problems.

Stephanies