This is a rant about doctors and the medical system. Immediate note: This is unfortunately not easily accessible for all for either availability or financial reasons, but if it is, it's worth it whatever your gender goals are.

Literally I am getting so old, I'm pushing 40, been going to docs about "this" since I was about 10 years old. My main symptoms have always been hyperadrogenism in clinical symptoms such as hirsutism, etc, and blood levels. This was figured out early on. I was put on androgen blockers in my tweens, got off them cuz I felt crappy. I had regular checkups would push for trying to dig deeper if I have PMOS (or anything else like NCAH I learned about some years ago) and endometriosis and every single time they would dismiss me. I didn't fit the phenotype because I was leanish and menstruated regularly enough. For years I removed my body and facial hair so that was dismissed from my self report as well and noone wanted to check my blood levels and the way they treated me just made me want to stop having any sort of contact with them. My mom had PCOS (but less hyperandrogenism than me) and mutliple gynos would literally tell me it's impossible she had PCOS and had me.

Then some years ago I grew it all out. Suddenly its so obvious how high my androgens are the gyno I see even refuses to check my levels because it's "obvious" they are mega high. Refuses to test me for endometriosis. Prescribes me a medication for pain that barely works and is known to cause liver problems. I stopped taking it because I was feeling a weird gargling feeling where my liver is (right side under ribs).

I decide to implement new very strict rules about what doctors I see.

If I don't have a a direct referral from an organization or a friend/acquaintance and I am blindly figuring out what doctor to see, I ONLY go to middle aged women (30-55) I have had great men (cis and trans) doctors and therapists, but they have all been from friends or orgs, I'm sure there's decent older women out there as well, but my random experience has been very bad.

Somewhere I learned I need to look into NCAH with my history, levels and so on and also I dunno how this is possible, but I realized late I need to see an actual endocrinologist not just gynos, or even gynecologist-endocrinologists double specializations have been ... well I'm not particularly impressed with where we've gotten over the years to put it mildly.

So turned out I do need to look more into NCAH, and for the longest time I've been told I don't qualify for PCOS/PMOS cuz I only have 1 of 3 (according to the Roterdam criteria which are a popular criteria, but they are not epistimically sound, don't rule out NCAH and are too generalized). So I'm on the road to diagnosing that more, going to do genetic testing finally, we'll see what that shows, but I want to get to my actual point of this post.

So for a random other thing I decided to go to an expensive gynecologist that is on a suggested for trans and lgbt+ people list. A bit irrelevant why, I'm too shy to go into details, but I wanted to see someone who would not be awkward about the hyperandrogenic symptoms of my body and would be easier to understand why I'm Ok with how I look, less weird about it and hopefully easier to focus on other wellbeing things, hopefully more up to date with the science etc.

This wasn't even why I went in but I gave her a quick rundown of my general history, she did some basic routine checks and was the first doctor ever for whatever reason to notice I have enlarged ovaries. I don't know if they just weren't enlarged earlier, I find it quite strange they would get enlarged just now. But basically she said that because of that that means I actually DO qualify in the Roterdam criteria for PMOS. Because one criteria is polycistic ovaries, but as that it also counts enlarged ovaries except apparently many doctors forget its polycistic OR enlarged. She did confirm that this is not particularly change much, does not mean much and could also be present in NCAH as an effect of the androgens and I am very right to continue checking for NCAH anyways. She also was the first gyno to say yes I SHOULD get checked for endometriosis.

PMOS needs so much more research and to probably be broken up into several different conditions ultimately anyway, it doesn't mean much to learn I actually do fall into the Roterdam criteria. But I'm just sooooooooooooooooo pisssssssssssssedddddd how bad the doctors have been at having a grasp at even the existing knowledge about these things. I am at the end of my rope as far as my sanity about this goes.

Anyways so yeah, doctor suggested for trans people turned out to be an actual pro finally who knows her shit.

Another thing that is driving me crazy is I am paying triple for healthcare in this case. I pay for public health insurance in taxes (which is almost useless for me here in Poland, but I wanna be able to not pay the hospital bill if I get hit by a car), I also pay for private insurance to see specialists because when I was doing this in public the waiting list was like a year and a half for an allergist and he was pretty bad in the end. But finally, for a lot of things like specialized tests and this doctor I am paying out of pocket, because visits with her aren't covered by my private insurance. Very very frustrated with all this.

As the title suggests, I started taking inositol, after four days, and mind you, my period had been absent for months, and guess what? I got my period right away! It then became more regular, with the longest gap between cycles being about 35 days.
It really helped me get a period every month. But then, it suddenly stopped working, and I missed a period, and it looks like I might miss another one now. Has anyone else experienced this before? What could be the reason, and what changes did you make?

P.S. Yes, I’ll definitely ask a doctor when I get to my appointment. I’m just asking people who might have had the same issue!

Please let me know if this isn't allowed here.

My (22 2-spirit) partner (21 gender ambiguous)

Has PCOS. Their periods are horrible and I got them some mugwort which really helps! But I want to make them a care package and am stuck on what else could ease symptoms or just overall help with mental health in this time. Does anyone have ideas or things that help with symptoms or make you feel better when it's that time of the month?

Wether it be pain management, or anything else everything is appreciated!!!

Thank you in advance!!!

Ps I apologize for formatting (I'm on mobile), and wording I just wanna do my best and help

I’ve been steadily losing hair. Luckily, my general shedding has slowed but my hairline is receding a lot. It is stressing me out.

Is there any hope for regrowth? I’ve been doing topical minoxidil and I think the shed of that makes me panic and I stop and that has just made things worse 😭

Has anyone been able to regrow their hairline or is it gone forever?!

I’ve been on metformin for 2 1/2 years and it has helped me immensely to get regular periods and I’ve been regular for 1.5 years now! I’ve been on spironolactone for a year and it has helped me immensely with hair thinning.

My doctor knows I’m on those medication’s and she knows I wanna start Zepbound and she didn’t specifically say that they all can’t be taken together….my goal is to eventually cut down on them or get off completely because I would love to see myself just on one medication (Zepbound). I wouldn’t wanna get off either one until I’ve successfully lost a significant amount of weight for me (30+ lbs) with Zepbound because I would hate to jump the gun and then ruin my regular period cycles, etc, that both metformin and spironolactone have worked so well for me on for so long.

Any advice or recommendations you can share? Thank you!! 😊

I have been struggling with my pcos more recently than I have im the past. My doctor recently suggested a glp1 for my symptoms plus weight management.
Anyone on a glp1 has it helped with pcos symptoms such as facial hair?

Has anyone tried spironolactone for hair loss and getting rid of the facial hair? What was your experience? I worry about the frequent urination side effect bc I'm already diabetic and go a lot lol.

My endocrinologist suggested it for the thinning hair on my head and at first I said no but I'm finally considering it bc it's really bothering me. The facial hair also annoys me bc I get tired of shaving lol

Hi everyone,

I'm 27 years old and have finally booked an appointment with a gynecologist, but while I wait I'm curious if anyone has experienced something similar.

My periods usually come every 23–25 days. I have noticeable hair growth on my chin, face, stomach, and around my nipples, and I also experience sudden weight fluctuations.

During my period, Days 2 and 3 are extremely heavy. I pass large blood clots which I can feel, and I sometimes get intense deep rectal pain before my period that can last for up to an hour.

I also have diagnosed iron deficiency, and during my period I become extremely fatigued and dizzy. I'm worried the heavy bleeding is causing my iron levels to stay low.

My gynecologist is going to evaluate me for possible PCOS and adenomyosis.

Has anyone here experienced a combination of these symptoms? If so, what was your eventual diagnosis? Was it PCOS, adenomyosis, endometriosis, fibroids, or something else? What tests helped you get answers?

I know Reddit can't diagnose me, and I'm not looking for a diagnosis here.

I'm just hoping to hear about other people's experiences while I wait for my appointment. Thank you! ❤️

Hi,

My doctor has suggested PCOS/PMOS to me and honestly it's such a relief to have an answer - but I have this really persistent mustache, and as an extremely femme nonbinary person, it's bothering me a lot. I shave it but it makes no difference, as I'm extremely pale and the hair is very dark so it shows through the skin l think?

What I'd like to ask is will facial bleach make a difference to this? I bought some ages ago when I was first self conscious about this, but I haven't yet used it.

The results have been life changing

Before I was diagnosed I would make art about how I felt because I couldn’t figure out exactly how to put it into words. I was diagnosed w PCOS about 2 years after I made this piece, but looking back I’m surprised at just how ‘on the nose’ some of my pieces were.

I’m seeking advise on if I should mention PCOS to my PCP.

I haven’t had a period in months, and before that it was never a constant every month thing. I’ve always attributed that to that I am a bigger girl (280 lbs) and from 15-20 years old I did have a IUD implant. I did have the implant removed 8 years ago.

When I was a teenager I would get a couple of chin hairs every few months, but in the last 6+ years it has drastically gotten worse. I have to shave every morning. I again, just attributed that to me being a bigger girl. And have sadly, been too embarrassed to ever mention that to my PCP. I know that sounds stupid but it is something I’m extremely insecure about.

I am currently on a weight loss plan, but it is a battle to lose weight at all.

I had never thought about PCOS simply because I did have a baby when I was a teenager and they didn’t say anything about cyst down there, nor do I have any pain that would make me assume that I have cyst. My coworker actually mentioned it to me that I should look into it because I was talking to her about some of the issues I have and she said it sounded like her sister who has been diagnosed with PCOS.

I just wanted to see if it something that could mainly be weight related, or if I should mention it to my PCP. Any advise is greatly appreciated!

Lately I’ve been having lots of gender questions and I’m kind of settling on just at least not being cis. However, I believe my experience w PCOS really impacted my sense of gender and I’m trying to untangle everything.

Unlike some trans masc people, I haven’t enjoyed the changes from PCOS. So, it’s making me doubt if I’m actually trans. Because I guess I “should” feel affirmed. But I think it’s hard because I’ve just internalized a lot of shame from feeling like I failed womanhood. I can’t tell what is shame that comes from other people and what is my own dysphoria/ wishing I was actually MORE feminine.

Or maybe I’m just non binary and have to sort of just let go a bit. I guess I’m wishing I had a more clear sense of what I’m wanting. I certainly don’t feel like a cis woman and don’t enjoy thinking of myself like that. But this stuff has confused me a bit. Can anyone else relate? Or also just…how do you feel PCOS has impacted your sense of gender, in general?

I’ve been trying to get too 11 stone , I’m currently 18 stone and 7 months ago I was over 20 , I had trouble getting below 18 because of my pcos so I went to the doctors they gave me orlistat and then didn’t really help with anything else just told me to exercise and only eat 1,400 calories a day with lots of water ( didn’t work and I hated orlistat)

I’m waiting for a review because they said the amount of weight I lost wasn’t enough so we need to talk about other options, they had told me I wasn’t qualified for other options so honestly I’m ready for them to just not do anything and tell me the usual stuff that I’ve heard a million times

I’ve been doing plenty of exercise ( 4 times a week for 40 minutes a day ) that is beneficial for my pcos while not affecting me badly with my other health problems as I can’t strain myself too much as I pass out very easily

I also completely changed my diet but also not completely cutting out foods that I like just only having small amount of the unhealthy foods in a moderate amount

I try to get lots of sleep but I’m a extremely light sleeper so it’s been hard with noisy neighbours and loud cards speeding down my street

I’ll be honest I don’t understand what I’m doing wrong , I’m trying harder then I was before and I just can’t get pass 18 stone I don’t even have to make it to 11 I’d be fine with 14 honestly but with limited help from doctors and with a family that tells me I’m either cheating, not trying hard enough or ask the same questions over and over again to annoy me ( they know the answer because they ask what the medication does at least 5 times a week ) I’m frustrated and stressed and I’m tired of putting in all this work to not see any type of results

If anyone has been in my situation please give me advice, I want to lose weight so I can start trying new things and get my self esteem back

Looking for experiences/advice from others with PCOS + ADHD 🫶

TL;DR: 9 weeks postpartum with PCOS and ADHD, trying to figure out the best option for regulating/protecting my cycle without needing birth control for pregnancy prevention. Curious how hormones may affect Vyvanse effectiveness and would love experiences with combo pills, Nuvaring, hormonal IUDs, etc.

I’m 9 weeks postpartum and trying to figure out the best option for hormone/cycle management.

A little background:
• I have PCOS and have never had regular periods on my own
• Before pregnancy, I usually needed birth control or Provera to induce a period after going too long without one
• I do NOT need pregnancy prevention (I have a wife)
• Main concern is protecting my uterine lining from building up too much from not cycling regularly

Other factors:
• I take Vyvanse for ADHD and worry hormone fluctuations affect how well it works
• I also take Lexapro + Tirzepatide
• I don’t really struggle with acne or androgen symptoms

My OB suggested Ashlyna, but I’m unsure if that’s the best fit for me personally.

Would love to hear:
• what has worked for you
• if anyone noticed ADHD meds working differently on/off hormones
• experiences with Ashlyna, Provera, hormonal IUDs, etc.
• anything that helped you feel more hormonally stable overall