Author Topic: POIS Research @ UMass -- NEED IDEAS TO GET FUNDING  (Read 337 times)

NamesMcree

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POIS Research @ UMass -- NEED IDEAS TO GET FUNDING
« on: January 04, 2022, 02:08:53 PM »
Hello all,

I am a medical student at the University of Massachusetts and a sufferer of POIS. I am looking to design a POIS research project to undertake this summer and may receive a grant to do so. I am competing against other medical students researching other Uro diseases to get this grant.

Many of you know the disease far better than I do -- What ideas do you have that I could realistically study this summer?

Right now I am thinking of studying the effect of exercise on symptom alleviation. Can we do better? Share your ideas below, the more detailed the better!

Muon

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« Last Edit: January 05, 2022, 05:40:56 PM by Muon »

Journey

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Re: POIS Research @ UMass -- NEED IDEAS TO GET FUNDING
« Reply #2 on: January 06, 2022, 11:57:50 AM »
Go and win gloriously and present the truth about POIS to the world! Soon the whole world will know about POIS!

Disaster

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Re: POIS Research @ UMass -- NEED IDEAS TO GET FUNDING
« Reply #3 on: March 08, 2022, 07:42:21 AM »
Hello all,

I am a medical student at the University of Massachusetts and a sufferer of POIS. I am looking to design a POIS research project to undertake this summer and may receive a grant to do so. I am competing against other medical students researching other Uro diseases to get this grant.

Many of you know the disease far better than I do -- What ideas do you have that I could realistically study this summer?

Right now I am thinking of studying the effect of exercise on symptom alleviation. Can we do better? Share your ideas below, the more detailed the better!

I think it is important to test various blood flow to the pelvic region. But you would need to get an Interventional Radiologist involved.

For a less invasive study you could study the effect of Diosmin, an supplement used for Chronic Venous Insufficiency on POIS.  It?s relatively inexpensive, but to make it a double blind study you would need to purchase and distribute placebo and regular pills.
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.

IronFeather

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Re: POIS Research @ UMass -- NEED IDEAS TO GET FUNDING
« Reply #4 on: March 08, 2022, 08:00:47 AM »
I think that studying the effects of exercise on POIS symptoms is very interesting, especially because it seems very beneficial to people in the first stages of POIS, but then there is a point for some sufferers, when their condition worsens, in which they can't tolerate exercise anymore, and moreover, exercise makes them just as sick as sex. That was exactly my case, for many years exercise made my POIS symptoms completely disappear, but then I experienced a sudden worsening of the condition and now exercise triggers the same symptoms than sexual activity, but much more severe. It's as if something in me had shifted and now was stuck in a different state. I strongly suspect some kind of involvement of the adrenal glands here (as I experience extreme thirst for days after very light exercise, to the point of being dehydrated after drinking 12 cups of water per day), but I would love to hear the opinion of a doctor on this (there's much more info in my POIS diary, linked in my profile signature, if you're curious or interested).

Just a little suggestion, I think it would be nice if you could include both types of people in your study, maybe create two groups: POIS sufferers whose symptoms are relieved by exercise, and those who are exercise intolerant. Maybe in the first group some parameters could be measured before and after exercise once POIS symptoms are present, and in the second group, you could compare POIS symptoms triggered by sex with those triggered by exercise, since they seem to share a common cause or underlying mechanism?

In my case (not sure about others but I think it's common), C-reactive protein is a parameter that is becomes very elevated when POIS symptoms are present. Also, since tachycardia (that appears some hours, or even a day after exercise) seems to be a common symptom of POIS sufferers that have developed exercise intolerance, what about measuring in a blood test the levels of different substances that could cause this, like some catecholamines or electrolytes? (You'll know far better than me what to measure, I'm not a doctor).

I'm sure other more experienced forum members will come up with better ideas, but I wanted to share these suggestions too in case they can help. I personally am far more affected in my daily life by POIS induced exercise intolerance than by my adverse reaction to sexual activity (I used to love sports and now can't even move a few boxes around without feeling very sick). If you can figure out the reason behind our exercise intolerance, many of us here will be forever grateful :)
« Last Edit: March 08, 2022, 08:04:32 AM by IronFeather »
26-year-old Spanish woman with POIS symptoms for the last 13 years.
Suffering from exercise intolerance since April 2020.
My case thread, with medical tests results.

Sunny1986

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Re: POIS Research @ UMass -- NEED IDEAS TO GET FUNDING
« Reply #5 on: March 09, 2022, 04:24:09 AM »
It's a very good idea to study the effects of exercise in case of POIS. I have been suffering from it since last 18 years. Earlier I used to run marathons, play all kinds of sports, used to jog daily.

But since last 6 years I am not able to exercise and I have conveyed the same to many doctors, they just simply say that build your stamina and gradually you will be able to exercise. They are not even understanding that even for 30 seconds if I exercise my body becomes weak and I feel like collapsing. Also I keep on vomitting if I stretch myself and do some exercise, as my body is not able to take any toll.

Sometimes basic walking becomes difficult. It takes a lot of effort to even walk properly. I have always been a brisk walker. But now I walk as if I am a 70 year old man.

Also I feel weakness in my muscles and bones. I feel as if blood is not flowing properly in my body.
And many times I urinate whitish liquid comes out.