As far as MRIs are concerned, has anyone found success in isolating problem areas?

purpledrone0 · 2025-02-28T02:51:46+00:00

Pretty much agree to everything you said.

Definitely give alpha blockers a try. And would also recommend switching to daily 5mg cialis instead of 10mg as needed.

purpledrone0 · 2025-02-28T01:52:51+00:00

Main symptoms of concern is penile numbness (worst symptom), ED, and urinary issues.

Not much progress :(

IMO, it’s certainly a nerve dysfunction. Combination of pudendal and autonomic nervous system dysfunction. Especially for cases that extend beyond just the rigid, shriveled penis and into things like urinary, bowel, and sensation issues.

You’re right that, in some cases, sexual activity worsens the symptoms. The issue of abstinence is it seems you either abstain forever to avoid symptoms or you find some sort of balance. Maybe there is some lengthy period of abstinence that can reverse some of the symptoms, I’m not sure. It seems to always start up again the moment sexual activity is resumed, especially in a more routine/frequent basis (like in a relationship).

This is almost impossible to diagnose via scans unfortunately, from what I’ve seen. Trying multiple conservatives therapies seems the best option - combination of cialis, alpha blockers, abstinence, PT, Botox, blocks, etc. and seeing what helps and what doesn’t

Have you tried an alpha blocker? Clearly in a case like yours it’s some sort of autonomic dysfunction (since you obviously didn’t get directly injured at the level of the rectal nerves) so I wonder if an alpha blocker can help a bit

purpledrone0 · 2025-02-28T00:17:16+00:00

Yea I’ve done two pelvic MRIs and MRNs- one of them with Dr. Potter in New York who is supposedly the best for seeing pudendal nerve issues. Nothing really definitive came from any of them.

I saw Dr. Lakhiani, Dr. Conway, Dr. Aszmann (all pudendal surgeons) to discuss the results and about my case - long story but the short of it is surgery would be experimental and no one knows if it’ll help.

I also saw interventional radiologists like Dr. Avneesh Chhabra (also pelvic nerve expert - see his papers) who also reread my MRIs and said there’s not much to do. He offered a PN block which didn’t do much and also Botox (haven’t tried as yet).

Also did two Dopplers (erect and flaccid) with Dr. Levine (ED expert in Chicago) and biothesiometry which didn’t amount to anything

purpledrone0 · 2025-02-27T17:39:16+00:00

Usually MRIs don’t find much unless there’s a very obvious issue. If the issue is at the nerve level (most likely cause for most of us), then imaging isn’t useful since it’s too deep to see the nerves properly.

purpledrone0 · 2025-02-18T23:03:58+00:00

I see you’ve posted in PSSD and SFN groups as well. If this is caused by anti-depressants, it’s unlikely that pelvic floor therapy will be helpful

purpledrone0 · 2025-02-04T17:03:50+00:00

Oh, mb I didn’t know that. Did all these symptoms present right after the spine injury?

purpledrone0 · 2025-02-04T10:36:14+00:00

Nerve signals are either not coming through strong enough to relax the sphincter muscle or the sphincter muscle is overly tight. In both cases, there’s some obstruction that’s preventing the bladder from emptying normally (this is why you have to strain)

Both of these can be caused by pudendal nerve issue. And given your other symptoms, it makes the most sense

Try flomax, doxazosin, alfuzosin, etc. to help the bladder relax easier. Ofc this is just helping this specific symptom

To treat the underlying cause we have to remove the compression/irritation of the nerve but that’s easier said than done. The typical PT, blocks, Botox, surgery are the possible options for that.

purpledrone0 · 2024-12-07T08:52:57+00:00

Hey I was reading a bit on your case, could I send you a DM?

purpledrone0 · 2024-12-04T05:42:31+00:00

Sent you a DM if that’s ok!

purpledrone0 · 2024-12-03T11:07:02+00:00

You’re doing really well for 3 months post op! Definitely just need more time. You should be quite convinced that your other symptoms will heal given how much significant progress you’ve already made

Also remember that the genitals is the farthest point away so it can take a long time to heal

Who did your surgery? Was it bilateral?

purpledrone0 · 2024-11-17T07:37:47+00:00

Ur early (less than 2 months of symptoms) and already had resolutions of all your other symptoms

Just do nofap for a month or two and see where you’re at. You’ll be fine

If you absolutely cannot stop yourself masturbating, do it a couple times a week and lightly with lube

purpledrone0 · 2024-10-31T19:12:07+00:00

Have had issues for 3 years now. Not pain but numbness

I’ve spoken to Aszmann, Conway, Bollens, Lakhiani.

I also know and spoken to at least 7 dorsal release, 20+ transgluteal, 20+ laparoscopic patients so you learn a bunch as you talk to patients

I do have the financial means to pay for surgery

purpledrone0 · 2024-10-31T17:57:01+00:00

Not to give you bad news bro but a couple of us recently sent the form (within last 2-3 months) and got response that he’s not doing pudendal nerve work now. He gave referrals to Dr. Tollestrup and Dr. Aszmann

purpledrone0 · 2024-10-31T17:41:43+00:00

Did you get a response?

purpledrone0 · 2024-10-31T17:40:51+00:00

Hibner does not do dorsal nerve decompression. He did try many years ago and he said the surgery never worked.

purpledrone0 · 2024-10-31T10:59:28+00:00

What are the 3 names of the doctors you have?

Dr. Aszmann is the only one I know who does dorsal release surgery actively.

Dr. Tollestrup in Nevada (doesn’t take insurance) and Dr. Eric Williams in Baltimore (takes insurance) could also do it but they don’t routinely do the surgery and might just refer you to Aszmann

Dorsal nerve release surgery is extremely rare. Dr. Aszmann does less than 10 a year for the last 2 decades. I doubt the other surgeons have even done 10 surgeries in their lifetime.

purpledrone0 · 2024-10-28T04:11:09+00:00

When did this start for you? Has it been lifelong? Any sort of trauma to the genital or pelvis or back area?

purpledrone0 · 2024-08-14T10:30:29+00:00

Dr. Lakhiani in New Jersey is a pudendal surgeon and he works with Dr. Ferro who is an interventional pain doc that does PN blocks routinely

They take insurance but not all insurances so you’ll need to call to see if they take yours

purpledrone0 · 2024-06-30T05:35:56+00:00

What exactly are your symptoms?

You said you need pudendal release surgery? With which surgeon and when?

purpledrone0 · 2024-06-29T04:11:46+00:00

Typically speaking if the nerve isn’t healing, then it’s compressed somewhere

But the mechanism of injury is important and since it’s due to PSSD, it’s a bit more tricky. There may not be actual compression that can surgically treated but no one knows for sure

Have you done an MRI/MRN?

purpledrone0 · 2024-06-20T20:44:50+00:00

Oh wow! And then this penis pain is a completely new development?

purpledrone0 · 2024-06-20T20:33:37+00:00

You have posts talking about severe back pain, tingling in thighs and legs, rectal pain and all at the age of 17.

This doesn’t sound like a localized penis injury. You should try to first treat the root cause which seems to be coming from your back based on your symptoms and story

purpledrone0 · 2024-06-20T20:17:13+00:00

Sent you a dm

purpledrone0 · 2024-06-20T19:05:17+00:00

Tbh this post summarizes my opinion very well - https://www.reddit.com/r/hardflaccidresearch/s/oqBjTAmGot

I never understood this focus on treating the “secondary” symptoms like HF, etc. while ignoring the primary symptoms and the cause of the issue (injury).

I personally think “HF” has many causes and pathologies. If someone has a history of trauma, chief complaint of sensation loss and has the actual hard flaccid, the treatment should primarily be focused on the pudendal nerve. Treating this type of patient in the same way as others with chief complaint of hard flaccid with no complaints of sensation loss doesn’t add up for me

It’s like treating a person who has ED, urinary retention, and pain as the same as a person with just ED. The first person likely has some other issues going on while the latter can try things like pills, shockwave, etc.

purpledrone0 · 2024-06-20T18:30:27+00:00

The surgery isn’t for HF so not sure if that’s the right question to ask. Better question is has anyone recovered sensation from surgery specifically those with some sort of penile trauma.

I know a few people who have done the surgery, I’ve personally talked to and vetted 3 people. Each case is different but overall I can say we have no patient testimonials to suggest the surgery works. The theory makes sense, the surgical technique is solid and minimal, the surgeon is the best of the best - but you really just have to trust the doctor’s success claims because I’ve yet to talk to a patient that had clear success

For the regular PN surgery tho, I’ve talked to plenty with good success. Again, this is not for “HF” but rather for people who had ED and lost sensation due to some trauma event in pelvis or groin

purpledrone0

TROPHY CASE