Just posting this here for future reference, for myself and anyone else who may stumble across it. I obviously haven't been formally diagnosed living in Middle America where getting NORMAL things diagnosed is a crapshoot but have eliminated all other suspected triggers for this sudden-onset, severe/acute illness that's taken over my life. After typing "sick after masturbating" into Google and stumbling upon this condition, I'm 99.95% convinced this is my answer despite the rarity of it overall, never mind among women. All diseases start as "men's and boys' diseases" until more research is done and then, whaddaya know? Turns out girls & women had them all along, we just didn't care to look. ADHD (presents differently), autism ("Light it up blue!"), hemophilia (much more common in males but does occur in women), etc.
I have been to the Urgent Care & had a battery of tests run when I thought I was dying of sepsis after a telehealth nurse refused to prescribe antibiotics for a suspected kidney infection: symptoms feel most similar to that, with chills radiating up my back and revolving around SEVERE fatigue that's almost paralyzing. They tested for strep, flu, COVID and did a swab for STDs, all of which were negative. Also, no UTI. My kidney/liver/heart function were also "pristine" according to my most recent blood test (and turned out fine in the Urgent Care too). I see the doctor every 3 months for my ADHD appointments which means blood pressure/heart rate are taken & I pee in a cup, and my doctor is very thorough. The only thing that was off was my glucose, which was 61--normal is 70 at lowest. I was not fasting but they didn't say what this might mean. I was not having an episode at this time.
My 1st bout of this hellatious illness happened on April 10th, at the same time my sister was down with COVID (she'd tested positive and was symptomatic). I'd been directly exposed to her without a mask for an extended length of time during the prodromal phase, when a person is most infectious. I thus assumed my symptoms MUST be COVID despite 4 negative tests. The tests are known to give false negatives (more so with each new variant), particularly if you don't take them when your viral load is highest. And by the time you're symptomatic it's often too late. But even my PCR test was neg so I kinda had to let that go. (It was around this time I read about POIS but pushed it to the back of my mind due to the rarity). And the sickness kept popping up. Long COVID perhaps? But it just KEPT coming & going, so I moved on to another suspect: the Betadine iodine (povidone-iodine) cream I was using on my scalp ringworm. I read that it readily absorbs into broken skin & can cause metabolic acidosis & other serious complications of the thyroid/kidney
(https://pubmed.ncbi.nlm.nih.gov/34258074/), so I was just
sure this was the issue (it seemed especially likely after the low glucose reading).
But alas, after throwing it away yet another round of the dreaded illness occurred, which left only one potential culprit: POIS.
SYMPTOMS
Symptoms begin about 10 minutes after orgasm & are directly proportional to the duration & intensity of masturbation sessions, the longer/more intense, the sicker I am for longer. The longest I was sick was just over a week. Position oddly seems to make a difference--if i lie down in the bed during the deed I'm okay, if I sit up I'm not. But this isn't like a vagus nerve attack* or motion sickness thing: it's much more severe. In fact it's more severe than any illness I've had save maybe severe norovirus. That includes COVID, influenza & strep. And it makes cold turkey opioid withdrawal and antidepressant withdrawal feel like the sniffles. The only drug withdrawal that's on par with it is cold turkey benzo withdrawal which can be fatal. I couldn't move from my bed if my life depended on it, which I thought it did the other night during a severe storm. I couldn't even feel around in my bed to pick up my phone to check if a tornado was coming. The fatigue is
that bad. I literally slept a night + a whole day + another whole night just now. 😭
A severe bout includes: runny nose, severe fatigue, nausea, diarrhea, fever/chills, lower middle back pain, nightmares, depression, dizziness/fullness in the ears, acid reflux, dry cough.
A less severe bout includes: runny nose, fatigue, 1-2 bouts of diarrhea.
HEALTH BACKGROUND
- Have endometriosis; been off hormonal birth control since early 2020
- Had COVID a suspected 3 times that presented as full-body itchy rash similar to chickenpox between 2019-2021.
- Bad concussion in 2020
- Had original series of COVID vaccines May 2021 (Pfizer) and a booster in December 2022 (Moderna bivalent); no more rashes since
- On Griseofulvin & topical antifungals for tinea capitis during onset of POIS.
- Severe period of mental stress from January 2023 until onset of POIS.
- Another suspected bout of COVID preceding the onset
- Long period of sexual abstinence leading up to onset: benzo withdrawal in 2013 killed libido until 2023-ish.
- Gay, never had semen inside or around vagina. No pregnancies terminated or otherwise. No known STDs (just tested negative).
- Female ejaculator. Rarely use sex toys, condoms (none since this began).
*I've had my vagus nerve directly hit during a PAP smear & know what that feels like: my body basically races to see whether it'll puke or faint first, with fainting always winning because I'm not a puker. Everything goes black and my ears do that high-pitched 'heeeeeee' thing but it's over very quickly. This is NOT that. I honestly don't know what to compare it to because it's so severe & feels like nothing I've ever experienced before. It's also not a gut microbiome issue, candida overgrowth or a vitamin deficiency that came on gradually. Not to pooh-pooh anyone's pet theory as I do suspect there are multiple subtypes & causes of this bizarre condition; I just want to drive home how sudden & acute my case is. It hit like a freight train & is worse than any illness or drug withdrawal I can think to compare it to. I honestly thought I was dying the 1st time.
Also, there are a lot of supplements I can't take due to chronic gastritis. I keep seeing long lists of things to try that I'll never be able to choke down which is disheartening. NSAIDS and anything even remotely acidic, spicy or minty are off the table. (Vitamin C, Resveratrol, any citrus fruit or flavoring, cayenne/cinnamon/ginger/peppermint, etc). I already take a crapton of meds & supplements that I'm about to list in my signature. But I'm open to all theories that are science-based & well-meaning. 💚
I guess this is extra hard because I was just getting my libido back and then BOOM. The universe said nuh-uhh, think again. I finally have my own place with plenty of privacy and can't even enjoy it now. It could be worse--Parkinson's, ALS, cancer--but it still sucks.
...to be continued.
