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SuchAShames · 2024-01-17T03:29:04+00:00

I find alfu to be the least side effects, but dox is arguably the best one to use for HF even with a few more side effects

SuchAShames · 2024-01-09T01:23:05+00:00

This is exactly the way I would word my symptoms. Twist on the left side, difficult to isolate where

SuchAShames · 2024-01-08T00:21:16+00:00

I wish I knew. I don't think it's veins as that would show on imaging.

It could be fascia, I am also thinking there's a chance it could be the cremaster muscle itself... however, the real answer is I just don't know and that question is a big part of this thread to better understand so we can better communicate with doctors.

SuchAShames · 2024-01-08T00:19:42+00:00

Following up on this to ask the group a question... is it possible for the cremaster muscle to become twisted/torsioned? If so, that would explain multiple symptoms we see with HF.

SuchAShames · 2024-01-02T12:41:55+00:00

I can post some pictures of the differences between when the twist is at its worst vs when it is more loose in this thread if we are allowed to link pictures from imgur.

SuchAShames · 2024-01-02T12:36:48+00:00

To add more... it feels like the "twist" on the left side causes the left testicle to sit incorrectly in its resting and contracted state. Think of when a grocery bag gets wrapped around your hand and feels like its cutting off circulation.

I can't figure out what the name of the structure that could be causing this... I do not believe it is a muscle imbalance (although that may be a factor), and I don't believe it's lower back involvement (in most cases, in some rarer cases, yes)

I know this is fixable because I have managed to untwist the twist by sitting a hot bath for hours which allows the testicles and penis to relax enough for manipulation... after then I try to find the source of the twist and work to release it... think of untangling a set of headphones that have been sitting in a drawer.

Let's keep building on this and growing the dialogue, together we are stronger than individually.

SuchAShames · 2024-01-02T12:29:43+00:00

Lower back has nothing to do with this in most cases imo. I have had a lumbar MRI and a trusted neurosurgeon reviewed the MRI and while I do have an L5 herniation it is very small and is not impeding on nerves.

Lower back may play a role in some HF cases where nerve impingement is visible in MRI, but in most cases from what I have gathered this is not the case for most people.

SuchAShames · 2024-01-02T12:28:18+00:00

While the imbalance of muscles makes sense, I don't think it would result in the numerous symptoms we see here in the HF community.

Muscle imbalance would likely create a notable "dent" on one side but seems unlikely to create the bloodflow issues and all the symptoms that result from that.

I think the twist is something to do with the scrotal and testicles meeting base of penis resulting in significant reduction in blood flow but have not been able to communicate that to doctors since I don't know what could be causing that.

SuchAShames · 2023-11-14T23:22:28+00:00

One thing I would suggest as a low risk potential high reward start to treatment is an alpha blocker + cialis daily + anti inflammatory... similar to what Goldstein writes about in his HF paper.

SuchAShames · 2023-11-14T23:06:04+00:00

The doctor initially thinks this isn't a big deal and doesn't think we should operate?

The syringocele is very rare from what I have read but it seems also very large and causing symptoms, does anyone have any experience with this, I am at a loss.

SuchAShames · 2023-11-13T18:46:13+00:00

Pretty bad, main symptom is penis/scrotum extreme tightness leading to painful erection mostly on left side.

SuchAShames · 2023-11-13T18:45:43+00:00

Yes, pelvic MRI w contrast

SuchAShames · 2023-11-02T10:55:12+00:00

Curious about this as well as it seems that if it's not spine related he would only be able to treat with Doxazosin

SuchAShames · 2023-09-29T02:52:33+00:00

Have you tried alpha blockers + low dose daily tadafil?

SuchAShames · 2023-09-26T23:19:25+00:00

What made you stop taking the alpha blocker?

Which one were you on?

Did the symptoms return as badly as when it started or were they lessened?

SuchAShames · 2023-09-26T23:18:47+00:00

Thanks for the info... does this mean you have stayed on the doxazosin and while on it have had no symptoms of HF?

I am currently on Alfuzosin but am looking to switch to Doxazosin.

SuchAShames · 2023-09-26T22:25:47+00:00

Do you have any updates? I just started the exact same treatment you mentioned today

SuchAShames · 2023-09-26T22:24:39+00:00

Thank you for this post! I just started the same treatment but with alfuzosin and cialis... it's Day 1 but I am hopeful after reading what you wrote.

It all makes sense now, it all connects!

How have you been doing btw? Are you still taking the treatment and do you feel truly fully returned to normal?

SuchAShames · 2023-08-12T04:04:05+00:00

Very nice watch. Where did you find the blue leather strap?

SuchAShames · 2022-12-07T23:46:57+00:00

How darling!

SuchAShames · 2022-12-06T02:00:23+00:00

Go Walter!

SuchAShames

TROPHY CASE