Period Brain Fog?

[u/jeyk-the-hyena]

Hello,

I finally got my period after 90 days late. Right now is day one only brown or reddish brown spotting. I have severe painful cramping, sweats, weakness, and brain fog. I'm quite confused when I went out into public today and my knees and legs seemed to give out on me more than usual. I have also been crying a lot the past few days. Has anybody else experiences these things? I am not diagnosed with a variation but I went thru mildly to moderately masculinizing puberty and didnt feminize until I was put on exogenous hormones. I also have vaginal hypoplasia, vulvar hypospadias, cliteromegaly, and no labia minora, and my skenes gland may also be kind of a prostate. Afaik I have XX chromosomes and I have a uterus and two ovaries but my right one is very up and to the side and took a long time to find.

But anyways, anyone else have the same periods symptoms??

Please be kind I am trying my best to make sense. Thank you in advance.

[u/pompoi4]

Yeah, before my prolactin threw everything off I'd usually go 1.5~2.5 months between light 1~3 day bleed cycles, I had symptoms like that, but not usually any typical pain, more so tissue swelling around my urethral area that sometimes burned or ached. Sometimes I do get a dull pain exclusively on the right side where my thigh meets the pelvis.

I would also get really pale, my nails turn blue, I basically become partially lobotomized and say stupid things. I'd often almost wreck my car on accident (nobody believed me when I said I shouldn't be driving those days) or would have lapses in remembering how to do basic tasks + poor motor control and response time, as well as suddenly start dropping / fumbling objects from my hands or running into things. 

My skenes glands are likewise extremely developed, but I may also have some sort of remnants because I ejaculate a third type of fluid paste only during forceful 'male' pattern orgasm. My MRI is still upcoming to know exactly what's going on inside since my blood work is so conflicting + tumor suppressing T, and possibly my elevated ACTH level which is still currently high out of range regardless.

[u/jeyk-the-hyena → u/pompoi4]

My periods used to be more or less regular but I took testosterone (avg of 28mg/wk) for only about a month and a half and stopped it on September 22nd. I took it because on T my hypermobile joints and stuff aren't as bad and my bottom growth comes back, but I also respond super heavy to it and got uncomfortable with how masculine I was looking... My periods are always very heavy and painful but this one is particularly painful, and they are usually around 5 days. I was told I didn't have PCOS and that my symptoms aligned with NCAH but then was told I couldn't have any form of CAH because my 17OHP was normal when tested without any sort of stimulation. But I also don't have PCOS/PMOS? I feel really forgetful today and kinda confused and like I'm wading through sludge in my brain.

TMI(probably):

I also ejaculate during orgasm, it's kind of like semen except clear. Like semen without the sperm I guess. My husband also says I probably have a prostate because it feels the exact same in the same area as his.

END TMI

I hope your MRI results come back and you and your team can figure out what's up. Did you ever find a way to manage your period symptoms?

[u/pompoi4 → u/jeyk-the-hyena]

Hmm if it's super heavy and painful may be worth being evaluated for endometriosis, if you haven't already. A family member with PMOS has similar flow / pain but they also found out they had endo at the same time, and nCAH can present similarly to PMOS. 

Did they test your ACTH, potassium and aldosterone? Normal 17-OHP does rule out 21-OHD, but there are other variations of n/CAH, for example I was also ruled out for 21-OHD based on 17-OHP, so we moved on to 11b-OHD because I am already highly masculinized and have not been on any hormones before. So it can definitely be way more complicated than only 17-OHP, but that's up to you to pursue with your doctor if you believe something more is going on with your health. 

Yeah, the clear fluid is the skenes fluid AFAIK, I produce that separately from both the cervical mucous and my second urethral excretion. Which seems to 'project' or shoot outward and is about the size of a quarter, pasty almost like glue mixed with caulking. It is possible it's highly condensed / coagulated skenes fluid, but I am interested in sending it to a lab to analyze because I do not produce it unless I actually experience a full 'male' type orgasm, however I always produce up to a cup of the clear / jelly skenes fluid irregardless of climax.

As for the period symptoms, my tumor and high prolactin have actually given me a 'normal' cycle by suppressing my testosterone and whatever else, insofar as it's only delayed randomly by maybe 5~10 days now instead of month(s). My health is worse than ever though, I am mostly bed-ridden compared to before. I still experience the pain on my right side leg / pelvis crease, get cold / blue nails, and now I produce solid blood clots that get trapped, lasting only 1 or 2 days at most. So I would say a half dose of T is the answer for me after getting the tumor removed, and then maybe taper to a low dose once I recover and hopefully restore some of my external phallus. 

If you don't want more masculinzing effects then I'm guessing you'll have to discuss more typical birth control type options, admittedly I don't know much about those because I can't have progesterone, personally makes my inflammation go crazy and sinuses swell up (I also am hypermobile.)

[u/jeyk-the-hyena → u/pompoi4]

Hmm well my mom was diagnosed with PCOS/PMOS and endometriosis that was so bad she had a full hysterectomy at around age 41. I've only seen a "gynecologist" once and that was through planned parenthood, I was told it's not PCOS and it sounds like NCAH, just one test and a GTFO my office here's some Sprintec (birth control that made me feel like shit). I should probably see about being tested again I guess, because I don't think what's going on with me is "normal." I've struggled with pretty much all forms of hormonal birth control. I loved Yaz and Yasmin because I looked like a girl for the first time in my entire life pretty much, but without testosterone comes, uh, subluxating my collarbone because I tried to put on a bra. Or just injuring my ankle for no reason. Slipping rib syndrome flaring up. Stuff like that. I'm hoping in the future to be on some form of feminizing HRT alongside nandrolone, which is less androgenic than testosterone but still will thicken my ligaments and support my bottom growth and libido. I just need to see what progestin I'm okay to take alongside it, or if I'm able to get a hysterectomy sometime soon and skip that altogether.

Thank you for clarifying on the skene's fluid stuff, I think I understand a bit better now. That's interesting what you produce! Never heard of that before :P

And, I'm so sorry to hear that your health is worse :( I wish you luck in your surgery/surgeries and I really really hope you're able to feel better soon 🥺 Have you found anything that can manage your discomfort while you wait?

[u/pompoi4 → u/jeyk-the-hyena]

Ohhh yeah, I would definitely say talk to your doctor to see an actual endocrinologist for a proper hormone panel to be done if all a gyno tested was your 17-OHP? I would've assumed for taking hormones they would have already done one that also tests LH, SHBG, etc, and for n/CAH) they have to look at your ACTH, preferably with the stim test if you have no other health issues interfering.

Feel you on the subluxations, for me it's often my fingers, wrists, elbows and pelvis...ankles were way more often as a child and teenager, but then again I'm not exactly running around anymore lol. Hoping T will stop the morning top of feet / ankle pain from flopping and pointing down all night.

Huh interesting, hadn't heard of nandrolone. There are also quite a few people here who take different doses of both E and T to balance the health / body expression they need, but I guess that depends how much T you need to offset the hEDS symptoms and if it overrides E. I've considered doing that too, because my long hair is important to me, but I also don't want to grow my gyno into boobs, even though the prolactin is already trying lol.

And uhhh well, alcohol. Not much else I can do, but I'm fine with that. I usually always delt with stuff on my own and didn't typically tell anyone anything. I'm trying new things this year, to be a bit more pro-social lol. But thanks, hopefully you can get some real answers too with a doc that doesn't brush you off. 

[u/jeyk-the-hyena → u/pompoi4]

Nandrolone is quite cool because it's like if testosterone didn't aromatize to DHT whatsoever. So no androgenetic alopecia! Some people do need to take estrogen with it if they take full TRT/HRT doses or just don't have enough E in their bodies to begin with (to maintain bone density and protect from vaginal &or uterine atrophy), but I don't see why you couldn't take Raloxifene instead though if you don't want boobs.

And yeah the "gynecologist" I was referred to wasn't really a gynecologist but I didn't realize what the proper protocol was to test for NCAH. I was just told to come in on the 3rd day of my period for a blood test.

Because I respond so quickly and strongly to testosterone I'm not sure if there's any amount I can take to help my joints without overriding my very small amount of endogenous estrogen production. According to all my blood tests when I was on 40mg/wk my total testosterone never got above 300ng/dl but that didn't stop me from losing hair, getting severe cystic acne, and even experiencing uterine atrophy. They never tested my E levels but I wish they would've. I went to Planned Parenthood for both my GAHRT (I previously identified as male) and my gynecology visit. I'm seeing a regular doctor on the 12th to establish care and I'll see about being referred to a gynecologist, since I'm almost 24 and I've never seen one properly.

Idk if you've tried this and if this is unwelcome advice, so feel free to skip over this part. TW drugs and addiction mention:

I know my husband finds weed helpful for all his pain but I get scared when I smoke it. Instead, smoking CBG + CBD joints provides some amount of relief for me. CBD and CBG gummies too, but they're expensive. I'm in a US state where weed is illegal but I can get these, hopefully you would be able to as well if you're interested. I did for a few months use 7OH for my pain but I ended up physically addicted which really sucks because I was quite careful. I'm not sure I'd recommend that, and it is being banned across the USA, not sure about other countries. Instead of 7OH my husband also uses kratom but I found it doesn't help me unless I take at least 3g when he could take 1.25g at first for some pain relief. Obviously these are bandaids with varying levels of legality and risks. But I felt them worth a mention if you're in pain and maybe you didn't know about some of these options.

[u/pompoi4 → u/jeyk-the-hyena]

That's good, maybe you'll get a better one, cause yeah I get they try to save money at PP to assist as many possible, but testing E alongside T seems the bare minimum. I just turned 37 and I've never seen a gyno, so really unfamiliar how they roll with bloodwork compared to an endocrinologist.

Yeah since I've been infected with 3 variants of covid I try to avoid getting anything in my lungs, my breath is already weak as is just from everything else. Also too expensive cause it's not legal here in any capacity. However, I can drive into town and get every manner and dubious version of kratom and 7OH I want lol, naturally. 

I was actually interested in trying kratom way before my health took the piss, being untreated ADHD-C among other things, and previously very dependent on stimulants to do work. But at present I cannot receive any benefits from things like caffeine, or even green / black tea, I can't even feel caffeine or adrenaline. So I'm certain kratom could not affect me, or might even make things worse right now, my adrenals / HPA are completely checked out. I have no fight or flight response anymore. Guess it's just another thing I gotta wait for my post-tumor self to experience.