Women with Post Orgasmic Illness Syndrome

[Muon]

If aromatase is higher expressed or shows increased activity then applied T may get converted faster to estrogens than therapy can keep up. But they might give you something for this while using low dose T (ask your doctor).

Take a look at this Heather, some natural products are inhibitors of aromatase, you could try those (ask your doctor first):

https://en.wikipedia.org/wiki/Aromatase#Inhibition_of_aromatase

Hmm some of these are flavonoids.

Edit:

Alternatively you could look up in literature what inflammatory markers are capable of suppression of these hormones or enhancing enzyme activities and use flavonoids to modulate it, Table 1:

The Role of Quercetin, Flavonols and Flavones in Modulating Inflammatory Cell Function

[hurray]

There could be something wrong with the conversion rate ratios of the enzymes. There are some diseases associated with enzyme abnormalities: https://en.wikipedia.org/wiki/Aromatase_excess_syndrome

It seems unlikely that she suffers from aromatase excess syndrome. It seems to be significantly rarer than POIS.

https://en.wikipedia.org/wiki/Aromatase_excess_syndrome

To date, 30 males and 8 females with aromatase excess syndrome have been described in the medical literature.

[Muon]

I agree with you there hurray. Also the symptoms don't fit but I meant it more in a generalized way regarding enzymes. Even if aromatase acts normal suppression might be an idea.

Researchers could collect a POIS group with low T and find out if an inflammatory parameter is responsible for driving it down IMHO.

[Muon]

If people see more females claiming to have POIS, send them to this thread otherwise these folks tend to get lost in a sea of messages and threads.

hamburgerspaceship:

"So glad someone is doing this!! I'm female but lmk if I can still be helpful "

Mariapol989:

"Hi everyone! I'm woman and I suffer from POIS for 6 years, are there women who have the same problem? I eat according to Anticandida diet, take vitamin D + K2, ferrum. I'm very curious about the ways you get rid of the symptoms: brain fog, depression and an endless list of POIS gift.

Hope to get the cure in 2020! God bless you all."

Mermaid (Nakedscientist from 2012):

"Doesnt everyone know by now this is all about prolactin/dopamine? I am new to this post but I am not sure if that has been mentioned at all in the 709 previous pages but dont people know by now the cause of this illness is hormonal?!

The cause of POIS is most likely due to the surge in prolactin which stays elevated for days post orgasm. Prolactin counters dopamine, which causes tiredness, depression, anxiety, etc. So really, you are dealing with 2 problems. One is the side effects of high prolactin and the other is the side effects of low dopamine. Excess prolactin also can result in higher cortisol, blunted thyroid response, etc! Has no one has figured this out by now on this post?

I am actually a 22 year old female in college and have this so I am seeing a doctor to see about lowering prolactin levels. I didnt start suffering with this until 2 years ago so I am trying to put it all together. I am going to my doctors to see about getting an MRI to see if I have a prolactinoma. It makes sense to me that if I have a prolactinoma (tumour in my pituitary causing increased prolactin) that is already giving me high prolactin levels, then an orgasm, which greatly increases prolactin as well, could tip my system over the edge and just knock all dopamine down to nothing. So, if you have POIS, I suggest you see a doctor who can tell you whether you have high prolactin levels naturally, low dopamine/low testosterone/low progesterone/excess estrogen which all can leave one susceptible to prolactin, or some other condition like hypothyroidism that will make you not be able to tolerate the surge in prolactin post orgasm.

I really feel for you all I know this is super annoying. I didnt start connecting my symptoms to orgasm until recently but since I have stopped ummm...well you know! lol... I feel much better! Of course its just my luck that I had to have an orgasm in my sleep this morning and put me back at square one! UGH!!!!! But I will figure this out I am making an appt with a very good physician tomorrow that my school clinic recommended.

Hope this helps!"

ajs

"I'm a woman and I have pois so I personally know it has nothing to do with allergy to seamen....I have been reading since the beginning and I remember that girlwind was very irritated by the moderater and I agree his ego and wanting to be right all the time was annoying and I really wish she did not leave...my pois turned into chronic fatigue and fibromyalgia and I could not digest anything and went to get food tested and my back welted up to everything but my blood work showed no allergies to food...I do know that my pois started after getting shingles....all the testing I've done and the only thing they have found were very high levels of antibodies to three different viruses"

[Muon]

"Tamoxifen may, therefore, have a beneficial effect in other neuroimmunoendocrine disorders both through estrogen receptor blockade and inhibition of mast cell secretion."

Estradiol Augments while Tamoxifen Inhibits Rat Mast Cell Secretion

[Muon]

Hi IronFeather,

Have they ever checked your testosterone and estrogen level?

[Muon]

Estrogen ---> IFN-g:

"(1) estrogens upregulate IFN-γ secretion, a vital immunoregulatory cytokine"
Interferon-γ levels are upregulated by 17-β-estradiol and diethylstilbestrol

IronFeather had colitis (=IBD)
IFN-g ---> Tight junction modulation ---> IBD/(auto)-immune disease

"Cytokine mediated changes in paracellular permeability contribute to a multitude of pathologic conditions including inflammatory bowel disease (IBD), airway inflammation in asthma [1] and cystic fibrosis [2], and diseases that perturb the blood-brain barrier (BBB) "
Cytokine regulation of tight junctions

Estrogen can also affect NK cell activity and numbers.

[Muon]

I believe these growth-factors are questionable for longevity.  We POIS'ers I think have a gifted DNA repair/archival process, and by un-necessarily keeping mTOR channels active long-enough is not conducive for longevity.  I actually appreciate Quantum's stack (its super healthy without all the growth on you everywhere) but I have not had any success with it. 

I have just exploring VEGF if that can improve our epithelial tissue ONLY without all that systemic all-across growth (that comes with other growth factors).  nanna1, Muon, and all you rest POIS'ers (or former POIS'ers), any thoughts?   

You may want to have a look at this swell: https://poiscenter.com/forums/index.php?topic=2695.msg35257#msg35257

[IronFeather]

Hi IronFeather,

Have they ever checked your testosterone and estrogen level?

Hi Muon! Yes, they have. As far as I remember, both came back normal... Right now I'm really sick with a full-on pois attack, and I don't even know what caused it. Lymph nodes swollen everywhere, extreme fatigue (this is a new one for me), fever, nausea... I don't know what to do anymore.

[Heather1111]

Hi guys! I missed a post from earlier above with some questions. Sorry about that.  Before POIS yes I always had an extremely high libido. More than any boyfriend or husband I ever had. Although since it started making me feel so bad sex is the last thing I want to do.

I'm somewhat always stressed due to running my own business and taking care of my family.

I have done 3 hormone tests over the last year. All were when I was not symptomatic. All showed very high estrogen and non-existent testosterone. I will be happy to upload those here if that's possible.

I did show on one of the test my cholesterol was a little high which shocked me a lot.  My last test a few weeks ago showed low vitamin D which also shocked me considering I literally take a vitamin D pill every day and I'm outside a good bit.

I have been experiencing this for about 4 or 5 years now and the symptoms have gotten considerably progressive worse over time.

Anyway, I can round up all of my blood test and upload them if anybody wants.

[Muon]

I did show on one of the test my cholesterol was a little high which shocked me a lot.  My last test a few weeks ago showed low vitamin D which also shocked me considering I literally take a vitamin D pill every day and I'm outside a good bit.

I'm not surprised by these answers. My POIS doctor told me once he had a patient who expressed a vitamin D level close to zero and couldn't get it up by Vit D supplementation.

Anyway, I can round up all of my blood test and upload them if anybody wants.

Yes please, you may post them here: https://poiscenter.com/forums/index.php?topic=2684.0

And discuss about them here: https://poiscenter.com/forums/index.php?topic=2695.0

[Journey]

I did show on one of the test my cholesterol was a little high which shocked me a lot.  My last test a few weeks ago showed low vitamin D which also shocked me considering I literally take a vitamin D pill every day and I'm outside a good bit.

I'm not surprised by these answers. My POIS doctor told me once he had a patient who expressed a vitamin D level close to zero and couldn't get it up by Vit D supplementation.

Anyway, I can round up all of my blood test and upload them if anybody wants.

Yes please, you may post them here: https://poiscenter.com/forums/index.php?topic=2684.0

And discuss about them here: https://poiscenter.com/forums/index.php?topic=2695.0

Isn't VitaminD used by immunity? Immunity or something else could be using up VitaminD in POIS or there's issue forming it so VitaminD deficiency causes/is related to POIS, not because of no sun/supplementation but as something prevents it from generating optimally.

[Muon]

Isn't VitaminD used by immunity? Immunity or something else could be using up VitaminD in POIS or there's issue forming it so VitaminD deficiency causes/is related to POIS, not because of no sun/supplementation but as something prevents it from generating optimally.

It is low in auto-immune diseases, inflammatory bowel disease, MCAD, malabsorption and can lead to osteoporosis. Low Vit D is probably the most frequent abnormality I've encountered so far on this forum and yet only one POIS paper has stated that the role of vit D could be investigated.

"It is also important to establish any influence on males with POIS, of the 25-OH D vitamin deficiency, if we consider the epidemic character and the implications of this vitamin(7)." Ref

The enzymes that play a role in vit D metabolism are Cytochrome P450 enzymes (indicated with CYP):
https://www.wikipathways.org/index.php/Pathway:WP1531

I haven't put time into this yet but noticed this today. The potential processes behind abnormalities seen in POISers, at least in this thread, might be driven by Cytochrome P450 enzymes (or their genes), https://en.wikipedia.org/wiki/Cytochrome_P450:
"Cytochrome P450 enzymes are present in most tissues of the body, and play important roles in hormone synthesis and breakdown (including estrogen and testosterone synthesis and metabolism), cholesterol synthesis, and vitamin D metabolism."

Also these enzymes seem to need iron, low iron is also seen in POISers:
https://en.wikipedia.org/wiki/Cytochrome_P450#Structure

They also play a role in AA metabolism and could lead to inflammation by the molecules depicted in red, some POISers may actually suffer from an active inflammatory pathway via P450 instead of COX:


This family of enzymes can be affected by many things including diet. These enzymes are wide spread and I wonder if they can induce multi-system symptoms aside from conditions like MCAS.

[drop247]

We need to check the "control" group to before we can say low Vitamin D is especially prevelant in this disorder POISers. What I'm saying is I suspect it's low in huge amount of the population.

[Muon]

How is it going with the TRT treatment?

I'm actually a little confused. I was doing really great. Actually even had an orgasm last week and had absolutely zero symptoms afterwards. Thought I was cured!! This was the first time I have had an orgasm in a looooong time. Had sex (no orgasm) Friday night. I did end up with a headache by Saturday morning. I still have a slight headache now. It's definitely not as bad as before by any means. It's actually just more of the headache too instead of all of the brainfog and confusion and irritability that I used to get. I go back to the hormone doctor Tuesday. I'm still on a super ridiculously low dose of testosterone. I'm going to ask for my dose to be increased. I absolutely am doing much better than before though. There is drasticimprovement over how I used to get. I think I've had sex 4 times since starting the testosterone and one orgasm  and this is the first headache I have gotten. That's amazing for me.

My Test prescription is a cream that is compounded. It is 2 mgs, but I only apply .25 mgs of that daily.

Got my blood test back. My testosterone level went from basically zero to a 4. Even with getting a headache the last time that was still a huge improvement over what it used to be. So still keeping my fingers crossed.

[Muon]

Heather's headache:

Mast Cells in Stress, Pain, Blood-Brain Barrier, Neuroinflammation and Alzheimer's Disease

"Migraine is also known to induce BBB permeability"

"Increased BBB permeability causes edema, increased S100B expression, and neuroinflammation (Koh and Lee, 2014). Activated mast cells cause both neuronal response and vascular response, as they are close to BBB structure and neurons. Stress-induced mast cell activation in dural vasculature plays an important role in the acute and chronic headaches"

"Because of the presence of vicious positive-feedback mechanism of mast cells and glial cells activation with inflammatory mediators’ release, even a small number of mast cells can induce significant neuroinflammation in the brain. In fact, about 50% of histamine and 25% of tumor necrosis factor-alpha (TNF-alpha) are from the mast cells in the rat brain that can cause nociception and pain signals in the brain"

Things to test during headache: TNF-alpha (+IL-1beta and IL-6)

If headache affects BBB: VEGF, S100B

More parameters under the header: Mast Cells, Pain, and Neuroinflammation

Milnacipran worked for Hurray's brainfog + testosterone patches worked for his symptoms similar to TRT helping Heather: Anti-inflammatory and anti-hyperalgesic effects of milnacipran in inflamed rats: involvement of myeloperoxidase activity, cytokines and oxidative/nitrosative stress

Additionally IL-1beta and IL-6 could be tested.

[Muon]

I see you believe that mast cell activation syndrome could be the main cause of POIS, do you think it can cause acne too?

Maybe:

https://www.reddit.com/r/POIS/comments/ioi1lm/antihistamines_definitely_reduced_acne/

New Aspects in Acne Inflammation

Neuroendocrine regulation of sebocytes - a pathogenetic link between stress and acne

"These findings suggest that SP may stimulate lipogenesis of the sebaceous glands which may be followed by proliferation of Propionibacterium acnes, and may yield a potent influence on the sebaceous glands by provocation of inflammatory reactions via mast cells."

[Muon]

How does the strength/intensity of orgasm affect POIS symptoms in female POISers? Any female that want to answer this?

[Muon]

https://myvagina.com/mast-cell-activation-syndrome/

[abdul]

Hi everyone. I am a female poiser.
I am 27 and I had the symptoms since I was 10 or something.
I used to overmasturbate. And I think my pois is because of excessive masturbation
 I started masturbating at the age of 10 or so I guess, however this habit was not an ongoing one. I mean it was on and off. at the age of 19 I stopped masturbating and having sex and I did not have NE and that age. After 1 year of not having orgasm my symptoms have been reduced, but did not disappear. My face used to get very ugly and my stress level was super high. Now I still get ugly after orgasm but not as much as it used to get, and I still have all symptoms but in a lighter level compared to the past. But it is still VERY annoying. I decided to stop having orgasm for a couple of years but that seems impossible because of NEs. Every 6 day one NE!
I am sure my pois is because of over masturbation
My question is if any of you has the same problem? Did you over masturbate?
Do you think excessive masturbation or masturbating at early age (before puberty) caused your pois, too?

I believe that our nervous systems have been overstimulated by excessive orgasms and we need to find out to restore its normal functionalities