Author Topic: San Diego Sexual Medicine's POIS Research / Kit's Case  (Read 4425 times)

Kit

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Re: San Diego Sexual Medicine's POIS Research / Kit' Case
« Reply #20 on: July 16, 2021, 11:08:29 PM »
@Kit: I used codeine because I had a bad experience the second time I took Tramadol (seemingly serotonin symptoms). However I don't take codeine often (I did so only two times, in fact), because I somewhat fear tolerance in the long run, and also because it causes me constipation (like all opioids) while I'm already constipated ordinarily. So most of the time I only take Paracetamol after O. (My trials with both Tramadol and codeine were with brands associating them with Paracetamol; Paracetamol alone is already rather efficient [50 to 80% symptoms reduction], but not as much as with opioids [100%].)
Hi Prospero, sorry for the very late reply. I’m glad to hear you at least found something that has given you 100% relief and it is unfortunate that is not something that could be used in the long run, but I think that was for the best. Yes I do believe that Paracetamol is pro-cannibinoid. In the past couple months, I tried Tylenol 500mg and 1,000mg within 1-2 minutes after O, and I did not feel a significant change in my POIS symptoms. I took the Tylenol a little bit before bedtime, and I woke up feeling the same as if I had not taken anything. (brain fog, foggy feeling in the head, lightheadness muscle weakness etc.) I will keep experimenting with other relief methods and report here.
« Last Edit: July 19, 2021, 05:56:51 PM by Kit »

Mr Raba

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Re: San Diego Sexual Medicine’s POIS Research / Kit’s Case
« Reply #21 on: August 01, 2021, 09:42:41 AM »
My personal belief after years of learning and experimenting is as follows. Note that this is a model I work. Just that. But it is based on scientific studies piecewise. That is many of the pieces are proven. The model I present is very simplified and not novel.

I believe that the enzymes my body needs to form effective skin, small intestine, and many other tissues that form barriers are being used up to create an alternative path for energy production. The key one being Glutamine. Many studies have shown that people with CFS (which I had simultaneous onset with POIS at age 27) cannibalize muscle to get to this enzymes and others.

When I take Glutamine for example  I feel my body shift to a higher energy state within minutes   Everything works far better. Mood, mental clarity, heart feels strong and my muscles feel nourished and up to anything. For about four hours. Then have to repeat.
The catch is that the immune system gets energy
as well making the reaction to O stronger, kicking in inflammation to high gear, creating more swollen stomach, joint inflammation, etc.

That is I believe my membranes leak. Which explains my reactions to shampoos, semen on skin, internal inflammation of pelvic area after O etc. The conduits that are supposed to contain semen as it is transported, gut as it digests, and possibly the blood brain barrier are leaking. The immune system thus coming in to clean up what leaks and perpetuating an inflammation cycle that uses up the same enzymes that are needed to seal the leak.

So in my opinion it is all inflammation based.

The key is to find the balance between keeping inflammation low while healing the leaky tissues. That has been the tough challenge.

Interestingly some people in this forum have found ways to go completely asymptomatic for a while by targeting their intestines with packs that work for them. And include generous portions of glutamine.

My guess is that  is why your skin reacts the way it does to semen.

I do not believe the spinal issues you are having are likely to produce all the POIS symptoms you are having.

I applaud your analytical and tenacious thinking. It will serve you well as you expand your search for what works for you.

Look at healthrising.org for a perspective on enzymes and CFS. You might be surprised to the overlap of symptoms with POIS.

I believe our bodies are over sensitized immunologically and neurologically  due to the immune system having to be in constant “clean up all that is leaking through” mode.

Note that living  fueled by glutamine as such is not a permanent solution. I found it not sustainable in large dosages. But may be a path to a permanent solution hopefully by healing the tissues that are leaking.

Simultaneous onset of CFS and POIS since Feb 1993. Married since 1989.

Helped by Immunocal (I explained how to take in previous posts).  Some relief on day one and day two.  It affects neurotransmitters.

Kit

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Re: San Diego Sexual Medicine's POIS Research / Kit's Case
« Reply #22 on: September 06, 2021, 06:25:05 PM »
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Kit

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Re: San Diego Sexual Medicine's POIS Research / Kit's Case
« Reply #23 on: September 06, 2021, 06:26:19 PM »
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Kit

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Re: San Diego Sexual Medicine's POIS Research / Kit's Case
« Reply #24 on: February 13, 2022, 09:11:42 PM »
Curious, is there any other member with a numb penis? What about POIS due to a pornography addiction? Only answer if you feel comfortable please!
« Last Edit: February 13, 2022, 09:30:50 PM by Kit »

Kit

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Re: San Diego Sexual Medicine's POIS Research / Kit's Case
« Reply #25 on: February 13, 2022, 10:49:59 PM »
Does anyone know a doctor that can help my case? Aside from Dr. I Goldstein.

Quantum

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Re: San Diego Sexual Medicine's POIS Research / Kit's Case
« Reply #26 on: February 14, 2022, 09:49:50 AM »
Does anyone know a doctor that can help my case? Aside from Dr. I Goldstein.

In the USA, you have Dr Wayne Hellstrom and his team at Tulane University in Louisiana, and You also have Dr Rachelle Rubin ( see POIS doctors list for their contact information, at https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 )

They are still investigating POIS, have no treatment algorithm yet, but they are really interested in POIS research and are actively working on understanding it better.

You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Kit

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Re: San Diego Sexual Medicine's POIS Research / Kit's Case
« Reply #27 on: February 14, 2022, 04:38:22 PM »
Thanks Quantum!

Disaster

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Re: San Diego Sexual Medicine's POIS Research / Kit's Case
« Reply #28 on: March 08, 2022, 04:20:20 AM »
Hi Kit, very thorough diary. Let me introduce myself. I am in my 40s and have had POIS from my first years of Orgasm so around 13-14 years old. Unfortunately my symptoms slowly progressed over the years to the point that I have the worst case of POIS to-date. I only learned of maybe 8 years ago. Before then I used to go to urologist since 18 and would blame my symptoms on Prostatitis or something like that. I have 90% of your symptoms but to an extreme degree. For the last 10 years I have been completely disabled and bedbound for the last 6 years because of Orthostatic Intolerence/POTS/IST/OH and the breathing attacks it causes. So I created the main POIS facebook group so we can all chat in real time. Feel free to join if you haven?t already. The form is very import for posts like this and other research. But generally I am in the facebook group more often.

About 5 years ago I was looking to organize a board of medical doctors to trigger more research into POIS. Dr. Goldstein was one that I spoke to extensively. If he reads your post he might remember me. He told me at the time he had many POIS patients, which I was shocked to learn. He also was friends with the Rutgers dr. who messed up the 1st POIS study the forum funded. One that you mentioned. I spoke extensively with Dr. Goldstein about my own symptoms and he expressed to me the idea of the Cauda Equina Syndrome. So I scheduled an MRI and I joined Cauda Equina groups on facebook. Turns out no one has any of our symptoms with Cauda Equina and my MRI showed no Cauda Equina. After that I stopped contact with Dr. Goldstein. In all fairness I do I some back issues related to POIS and transient numbness for 24 hours after orgasm. So my spine is involved but it?s not a Cauda Equina anything.  Also I felt that meant he wasn?t willing to look further out of the box.

Over the years ai have tried many remedies. When I was younger I actually used to use a supplement called ?Qi Male Chi? by Chinese Medicinals (the name of the brand). It would immediately relieve my muscle weakness and fatigue and restore my sperm quicker. Those were my 2 main symptoms when I was younger, but not my only symptoms. But I remember 1-2 years later I saw a report that one ingredient in this Chinese remedy could cause heart attacks. So I immediately discontinued using it. I tried googling it and can no longer find it on the market. Another thing that helped me temporarily was juicing and being all raw vegan. It helped my energy level, lower abdominal pain. But even after years on that diet and going back to a very healthy regular diet symptoms return so it is not cure. I have many more extreme symptoms, most that I have not found a remedy for. Too many to list here

I have been writing theories here and there based on my own experience and years of reading other people?s experiences. My latest theory I posted here and in the fb group is that a lot of us have a form of Pelvic Congestion Syndrome. It is mainly diagnosed in women and for men it?s only seen as happening in the testicles as epididymitis. It?s basically a compression of an artery or vein and in epididymitis in the testicles and causes inflammation. I believe for us it?s happening in other places. Research has been shown that compression syndromes such as MALS, Thoracic Outlet Syndrome, Nutcracker Syndrome, ect.. causes inflammation and that triggers a cascade which can include Mast Cell Activation (type of hard to test for allergy),mental health issues, pain, ect.. Also because the blood flow is being restricted internally that blood return to the heart is slowed and that causes Orthostatic Intolerence for some. Some people have multiple compressions.

I know that when I am erect I can feel a ball growing in my rectal/perineum area. I have thought this to be my prostate, but it could also be getting stuck. I have taken my BP during Erection, mid masturbation and after orgasm and I see rise in BP for the 1st two parts and a major dropoff after Orgasm. Also Systemic BP is not as accurate as organ or regional BP. For example a person could have Pulmonary Hypertension (high lung BP) and low to normal systemic BP.

Anyway long story short I recommend people see an Interventional Radiologist who specializes in Pelvic Congestion Syndrome. Try to explain to them what is going on and that you want to get tested for Pelvic Congestion. Not sure if they would allow it but it would help if you could get aroused during testing. Go home, Orgasm, get retested, even if on another day.

Also it could have to do with too much dilated veins or arteries like a chronic vascular insufficiency or varicose veins in the pelvic region. In this case a trial of supplements like Diosmin might help.

Feel free to message me anytime.
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

Disaster

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Re: San Diego Sexual Medicine's POIS Research / Kit's Case
« Reply #29 on: March 08, 2022, 07:29:38 AM »
Does anyone know a doctor that can help my case? Aside from Dr. I Goldstein.

In the USA, you have Dr Wayne Hellstrom and his team at Tulane University in Louisiana, and You also have Dr Rachelle Rubin ( see POIS doctors list for their contact information, at https://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 )

They are still investigating POIS, have no treatment algorithm yet, but they are really interested in POIS research and are actively working on understanding it better.

I emailed Dr. Hellstrom twice once in 2017 and once in 2020 for the Semen Production research we had been talking about on the forum. He never answered either email. Perhaps I will try to call him. I believe they need to focus less on the Semen and more on Pelvic vascular flow.
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

Kit

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Re: San Diego Sexual Medicine's POIS Research / Kit's Case
« Reply #30 on: August 08, 2022, 10:51:37 PM »
Hi Mr. Raba and Disaster. Thanks for the messages, I will get to them tomorrow. I have been dealing with chronic health issues and I am trying to heal. Thank you so much for your patience!

Muon

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Re: San Diego Sexual Medicine's POIS Research / Kit's Case
« Reply #31 on: August 09, 2022, 04:16:08 AM »
Goldstein, Hellstrom, Komisaruk and many more are part of an international multidisciplinary research group discussing how to approach POIS with regards to research. They do not have any standardized treatment to offer at this point in time so you will probably run into a wall. I have shared some ideas with them. There will be a recruitment phase in the near future if there are no setbacks. They want to offer international patients the opportunity to participate in research.

Kit

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Re: San Diego Sexual Medicine's POIS Research / Kit's Case
« Reply #32 on: August 09, 2022, 10:59:56 PM »
Hi, sorry Mr Raba and Disaster, I will get to your messages in the morning for sure on PST. I have still been recovering from my illness and it is going ok. Thanks again for the patience!

EDIT: So sorry, I am in recovery for a reason, please give me more time to reply. Thanks!
« Last Edit: August 10, 2022, 02:06:14 PM by Kit »