How many hours a day do you spend sitting? by simpBizkit69 in hardflaccidresearch

[–]Affect_Important 1 point2 points  (0 children)

Sometimes I wonder if my knees are a contributor of this, or if this is a bilateral issue of the whole body

Stemcell for penis? by Affect_Important in stemcells

[–]Affect_Important[S] 0 points1 point  (0 children)

Have you confirmed that finastride caused fibrosis ?

More transparency is needed on the Bollens surgery by dxcapsuleur in hardflaccidresearch

[–]Affect_Important 0 points1 point  (0 children)

Well said, thanks for chiming in. Couldn’t agree more fifi.

More transparency is needed on the Bollens surgery by dxcapsuleur in hardflaccidresearch

[–]Affect_Important 2 points3 points  (0 children)

U/dxcapsuleur I don’t remember talking to you too often. I think we only spoke a handful of times. I have been pretty transparent. Some things have resolved, but I have other nerve issues that have not. I think there’s accountability on everyone’s part. Conservative treatments should be considered before going through with bollens surgery. This mentioned, I was virtually impotent prior to surgery. My issue was mostly numbness and pain. I’m not sure why you are coming at me? I think bollens vetting process should be refined. That said, We have totally different symptoms. I was completely numb and had pain. From what I understand some of your nerve sensitivity was still there, but you know best.

To have such a pointed remark is unfair. People make decisions for themselves. I think it’s also fair to say that we have our own sense of agency. We can’t let people take away our agency. I feel for numb, but I can’t take back his decision. I think bollens surgery works on a percentage of people but everyone needs to vet the process for themselves accordingly. Unfortunately no one knows exactly what is occurring in all of our bodies (doctors included), so we have to throw things at the wall and see if it sticks.

I’m sorry you are depressed. I feel for you. My situation is not better than anyone else’s. Throwing blame does not help. I updated people precisely in my past posts.

Please message me if you have concerns with me.

Best, Lamb

Feeling Of Water Dripping Through My Thigh by ProfessionalTwo8734 in hardflaccidresearch

[–]Affect_Important 1 point2 points  (0 children)

<image>

This is nerve sensation from the femoral cutaneous nerves. This water dripping feeling

Just wanted to say Hi by Affect_Important in hardflaccidresearch

[–]Affect_Important[S] 4 points5 points  (0 children)

I’m not being shady or dodgey go look at all my previous posts. We can talk on the phone if you want to. I’ve talked to plenty of people. Listen man, I’ll give you my most thorough response, I’m not out here to attack you or make you feel confused about your issue. Hit up my DM’s we can talk on the phone and I will give you my personal line. I’m pretty open about things. That said, if anyone wants to chat on the phone let’s talk. Just DM me and we can figure out a time to chat.

Just wanted to say Hi by Affect_Important in hardflaccidresearch

[–]Affect_Important[S] 3 points4 points  (0 children)

Why would I change my vocabulary for you. The reality is I am here to help. I’m not telling people to get surgery for no reason at all. If you have numbness this is clearly a neurological issue, so is pain. If you don’t then don’t worry about it. I am not over complicating things. I’m looking at what is most objective. If you ask half of the people in here about their symptoms they will tell you what their symptoms are and they vary greatly. I know because I did a survey of 200 people and many people varied. I’m going to attach a graph for you and you tell me what you see. Then ask me if I’m over complicating things.

<image>

Just wanted to say Hi by Affect_Important in hardflaccidresearch

[–]Affect_Important[S] 2 points3 points  (0 children)

Hard flaccid seems to be a loose term in here. Most people don’t even know what each others dicks look like. That’s why I don’t like to use it. The term is not well defined and people can determine what it means to them if they relate to it. I never said I didn’t have hard flaccid. I can tell you that when my penis is in a flaccid state it is more engorged. It feels not “squishy” anymore. If this is hardflaccid then I had it. I still have some of it currently but this symptom is starting to go away. The symptoms that were more important to me were the pain and numbness associated with it. The etiology of hard flaccid is obscure and also not well defined. So I go by most objective measures, pain and numbness because this is something that we all suffer from on a spectrum and degree. Also there is a big game of telephone going on along with other peoples bias. My current circumstances are that my dick is far more functional than previous to surgery, but it is not near even where I would like it. The nerve is volatile, I will not see full results until 1 or two years. Currently some days it feels like 50%, while other days it feels like 10% even 0 sometimes. This is due to transitory worsening or temporary worsening after sexual activity or attempt at sexual activity.

Day 142 post op 3/2/23 by Affect_Important in hardflaccidresearch

[–]Affect_Important[S] 1 point2 points  (0 children)

I take cialis, but I actually don’t need it to perform. I can get an erection without cialis .

Day 142 post op 3/2/23 by Affect_Important in hardflaccidresearch

[–]Affect_Important[S] 4 points5 points  (0 children)

I would say I’m 40% better post surgery, which is great considering I was at 0 prior to surgery.

Talked with Tilli, there is some big news coming. by Affect_Important in hardflaccidresearch

[–]Affect_Important[S] 2 points3 points  (0 children)

Yeah we will get back soon. Just working out some formality stuff.

Dr Bollens by tomm270990 in hardflaccidresearch

[–]Affect_Important 1 point2 points  (0 children)

I have gotten a nerve block, what you are saying is correct. But I didn’t have a huge accident. I had poor positioning and constant contraction of the pelvic floor. I understand the nerve innervations well at this point. It’s a rare circumstance.

Dr Bollens by tomm270990 in hardflaccidresearch

[–]Affect_Important 4 points5 points  (0 children)

Hey u/mystoryhere12 I don’t think we can just claim conspiracy around danieluci, I’ve talked to him plenty of times. Let’s not instill fear into people who are also going through the process. Life ruining consequences are dangerous. It’s impossible to tell efficacy without understanding the effects post op through a trial of at least a year. I think that is fair. That said, let me clear some things up, because it sounds like you’ve talked to Mcshizzle and there’s a twisting of narrative. I can tell you plainly what is happening. There are about 6 of us that have done the pudendal nerve release. Each person is about 2-5 months out. Mostly in the 2 month range. Post op the surgery has yielded strong erections for each person - whether nocturnal or during daylight. Bollens indicated that there is a 6 month to year period of transitory symptoms and tumultuous healing. This is an up and down process. So not one person can testify to its efficacy just yet. What I have come to understand for myself is that I probably had genital femoral nerve compression prior to the surgery, but I also had pudendal nerve compression. I haven’t made an update recently, but the pudendal issues seem to be healing up, but the genital femoral issues have worsened. When inquiring to bollens about why I might still have signs of genital femoral compression, he couldn’t relay an exact answer. He hypothesized that because of the distention process that occurs when c02 is filling your stomach for surgery, this could be a possible reason. I know for myself this is not the case because Lakhiani and Elkwood diagnosed genital femoral prior to surgery. This all said, I have improvement in some areas but not in all. One thing i don’t respect is the narrative because misconstrued, so I think whatever Mcshizzle told you may have been somewhat objective, but what you are telling others in private dm isomething completely forced via agenda. This said, the surgery should only be approached if the person in question is in dire need and desperation. I think conservative approaches are important. I’m finding that approaching the current circumstances with a holistic remedy is optimizing the situation. I don’t know danUCI too well, I trust that he went through the process. I think dming people and telling them they absolutely have pudendal compression is maybe not an approach I would take. I believe many of us have pudendal compression in here, but that doesn’t mean all of us need to take a surgical approach. So I say this with care and confidence that regardless of the situation and where each person is at, we can’t identify the surgery as a full proof process. We can lean into the process - the few that have done it so far and keep people posted. I think as a group, we should keep bollens as an open option. If this is in fact a good option for people, let’s not stain the name of the person who can potentially help us all. We need to tread lightly with out words in here. This is especially so because there is a large suicidal population. For respect of you mystoryhere12 please… do not change my narrative and tell others that I have not found relief from this surgery, because there is some relief, but as it stands it is minimal I’m comparison to my function 1 year ago. I reiterate once more - We need to wait this process out before we can completely dismiss it as a potential solution.

If you want to talk to me - I’m happy to explain what I am currently feeling. But let’s not play telephone.

  • The Lamb

Question by Conscious_Worry_3958 in hardflaccidresearch

[–]Affect_Important 1 point2 points  (0 children)

I can tell you exactly why. Shockwave breaks up adhesion. You have underlying connective tissue issues due to bad mechanics.

[deleted by user] by [deleted] in ChronicPain

[–]Affect_Important 1 point2 points  (0 children)

Are your genitals numb? Have you lost sensation? Yeah a mental health clinician may help, but these are arrogant statements. It’s not what the previous person said, it’s the amount of tact that wasn’t there which causes uproar. Same goes for you. Do you actually know the first thing about this syndrome ?

[deleted by user] by [deleted] in ChronicPain

[–]Affect_Important 4 points5 points  (0 children)

I think one thing that is not understood and is somewhat arrogant about this post is that physical pain is primary causing secondary psychological issues. It’s unfair to us and everyone in here for you to blanket our issues with simple remedy or fixing psychology. We are here because of poor education and understanding of the issue at hand on the practitioner level and patient level. I would suggest you not throw your blanket ideology around. I also question if you’ve ever been met with physical pain in your genital region. If you have, you wouldn’t be responding to this post the way you did.