Author Topic: Women with Post Orgasmic Illness Syndrome  (Read 12660 times)

IronFeather

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #60 on: February 24, 2020, 01:19:36 PM »
Same thing with IronFeather. She sensitized to some standard changes of parameters in the body as a result of sexual activity. It gets worse over time. Same thing with her soy sensitivity. She was in a sensitization process up to the point of colitis (which is another condition that could be related to mast cell activation disease).

Maybe you're right. I don't know what to think anymore. I'd never heard about mast cell activation disease, but I've looked up some information recently and it seems a bit exaggerated to me, isn't it an illness that's supposed to cause random reactions to various substances, red rashes on the skin, allergy attacks...? Can a person have MCAD and only display symptoms of a sensitivity to a certain substance, and in the case of poisers, to sexual activity? Isn't it a dangerous disease that would have caused us serious problems by now?

Honestly, I'm worried and scared about how this is going to evolve in time. Back when I was a teenager I could never have imagined the magnitude of the symptoms I'm having now, so who know what is yet to come? Does MCAD pose any risk to the brain? That's what terrifies me the most, my entire life revolves around intellectual activities, am I going to lose it all because of a stupid random disease?
« Last Edit: February 24, 2020, 01:40:36 PM by IronFeather »
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.

IronFeather

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #61 on: February 24, 2020, 01:25:38 PM »
ironfeather and timtim, how long does it take you guys to recover

For me, it used to take one day to recover when all of this started, but it's been steadily getting worse over time, and now it usually takes me two weeks. But I can speed up the process by doing aerobic exercise and sweating, and after that my symptoms fade in about a day. Anyway, I still feel kind of weird, sick in a diffuse unexplainable way, for as long as one month.
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.

IronFeather

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #62 on: February 24, 2020, 01:37:46 PM »
@ IronFeather: What is your ethnicity?

Hmm, well, I'm going to make a fool of myself with my reply, but I'd never actually given the concept of ethnicity much thought, so I'm not sure how to answer this! Because ethnicity seems to be different from race. So... My mother is from the Canary Islands and all her ancestors are, so chances are I have some African genes in me, and my father is from southern Spain. I don't know much about his family though, but probably all of them are from the same place. So, my race would be white, and my ethnicity, uhm, southern European?
25-year-old Spanish woman with POIS symptoms for the last 12 years.
Suffering from exercise intolerance since April 2020.

demografx

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #63 on: February 24, 2020, 04:23:11 PM »

@ IronFeather: What is your ethnicity?
I’m not sure this is an appropriate question for our public forum.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #64 on: February 24, 2020, 04:33:58 PM »
@ IronFeather: What is your ethnicity?
I’m not sure this is an appropriate question for our public forum.

"Demographically, white females dominated."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341697/

demografx

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #65 on: February 24, 2020, 04:43:18 PM »
The study does not single out any specific, individual participant. It is a statistical *summary* of ethnicity. Individual data remains private.
« Last Edit: February 24, 2020, 04:45:09 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

hurray

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #66 on: February 24, 2020, 05:28:20 PM »

"Demographically, white females dominated."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341697/

That's unfortunate. It is a bit of a blow to the MCAS/POIS theory.

If females dominate the population of MCAS sufferers, why is it that 90%+ of POIS sufferers on this forum are male?

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #67 on: February 26, 2020, 07:49:07 AM »

"Demographically, white females dominated."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341697/

That's unfortunate. It is a bit of a blow to the MCAS/POIS theory.

If females dominate the population of MCAS sufferers, why is it that 90%+ of POIS sufferers on this forum are male?

POIS might be a manifestation of MCAS which shows up in a small subset. This small subset could be dominated by men because men produce semen and thus have more ways to trigger mast cells compared to other sexual related triggers when throwing females into the mix. There have been more than 1000 different proteins mapped in human semen so far and that's only the protein part. It contains many mast cell mediators as well. The gender ratio of this POIS subgroup might be different than the gender ratio of the total general MCAS population.
« Last Edit: February 26, 2020, 07:51:57 AM by Muon »

hurray

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #68 on: February 26, 2020, 07:31:42 PM »

"Demographically, white females dominated."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341697/

That's unfortunate. It is a bit of a blow to the MCAS/POIS theory.

If females dominate the population of MCAS sufferers, why is it that 90%+ of POIS sufferers on this forum are male?

POIS might be a manifestation of MCAS which shows up in a small subset. This small subset could be dominated by men because men produce semen and thus have more ways to trigger mast cells compared to other sexual related triggers when throwing females into the mix. There have been more than 1000 different proteins mapped in human semen so far and that's only the protein part. It contains many mast cell mediators as well. The gender ratio of this POIS subgroup might be different than the gender ratio of the total general MCAS population.

I largely agree with your reply, but it would seem to demonstrate that the "white females dominated" quote isn't statistically relevant for the purpose of linking MCAS to POIS.

Also, white people constitute a sizeable majority of the population in the USA where the study took place, so I am unconvinced that race is a significant factor.

Obviously, race can be a factor in certain specific illnesses (sickle-cell disease), but I haven't seen much evidence on this forum that it is a factor with POIS. The people who post here seem to come from a wide variety of countries and different parts of the world  :)

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #69 on: February 26, 2020, 07:42:34 PM »
Also, white people constitute a sizeable majority of the population in the USA where the study took place, so I am unconvinced that race is a significant factor.

Good point. Here is an old poll also showing a significant racial asymmetry:
https://poiscenter.com/forums/index.php?topic=151.0

hurray

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #70 on: February 26, 2020, 08:06:18 PM »
Also, white people constitute a sizeable majority of the population in the USA where the study took place, so I am unconvinced that race is a significant factor.

Good point. Here is an old poll also showing a significant racial asymmetry:
https://poiscenter.com/forums/index.php?topic=151.0

Interesting. The fact that this is an English language forum probably affected the results of the poll. Perhaps there is a Chinese poiscenter that we are unaware of  :)

demografx

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #71 on: February 26, 2020, 11:30:09 PM »
hurray, you motivated me to Google for a Chinese POIS forum (Russia has one) - - no luck :(
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Investigator

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #72 on: February 27, 2020, 05:35:58 AM »
Muon, you seem to have some insights about MCAS and POIS. I still haven't had the chance and time to read in depth about it. Could you think of some marker that can be tested in a lab that you suspect would turn out abnormal in us, compared to healthy subjects? If yes, well, we can do a self-study, a bunch of us on our own testing for that marker, maybe before as well as 24 hours after orgasm, and compare? Lab tests for immune markers are not even expensive. Maybe IFN-gamma? Or you can make some list. If it's not super fancy stuff, most labs in the various countries where we live would do it. But it would be great if we have an actual lab-measured marker that is off in POIS sufferers compared to a control group.

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #73 on: February 27, 2020, 07:38:52 AM »
Yes I can make a list of parameters. I don't think there is an unique marker for POIS (I changed my opinion about this over the years). If POIS is MCAS related then you will need to test a collection of parameters. People could show differerent parameter profiles, it's not as simple as testing for one or two things, although there are a few that are more likely to show up than others.

I will make a seperate thread for this and will place it under the 'investigation areas' category later this week or next week.
« Last Edit: February 27, 2020, 08:17:43 AM by Muon »

Muon

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Re: Women with Post Orgasmic Illness Syndrome
« Reply #74 on: February 27, 2020, 12:37:00 PM »
However, recently I have been taking sertraline and I think it has made my symptoms worse and continuous. It's almost 3 weeks I am taking this pill and my symptoms are more in numbers and more severe and they tend to continue more than a week. 25 mg dose.

Table 12, Selective serotonin reuptake inhibitors:

Pharmacological treatment options for mast cell activation disease

I cannot tolerate SSRIs myself.