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.
