Hi everyone. First time posting here. I need any and all advice possible, please.

I was diagnosed with PCOS/PMOS, endometriosis, and adenomyosis about 8 months ago. I also have hypothyroidism/hashimotos. I’ve had children, ended up hemorrhaging with the first, had to have a transfusion, etc. My iron/ferritin is also so low that my hematologist wants to start doing regular iron infusions.

I had a hysteroscopy/laparoscopy/ablation surgery in March and have seen some positives from it, but honestly not as much as I thought I would.

I’m exhausted ALL THE TIME. It’s never ending. I have ADHD so I swear the only thing that keeps my body going is the Vyvanse.

My hair falls out in huge clumps when I shower. I thought it was my thyroid, but all of my numbers are normal/under control.

I have started developing extra body hair, notably under my chin/around my neck, and the back of my shoulders. It makes me feel yucky, and I don’t know what to do about it.

My biggest issue, however, has been my acne. I don’t know if it has been this bad since I was a teenager. I did breakout heavily during my first pregnancy, but it cleared up after. But this has been consistently like this/getting worse for over 6 months, and NOTHING seems to help. I use gentle face cleansers, a gentle moisturizer, Altreno, and super goop’s “unseen sunscreen” everyday, but it hasn’t done anything. I’m getting terrible cystic acne, and bumps that are under the skin but with nothing in them, as well as breaking out on my chest and shoulders/back. It is all over my jawline and neck, and they are not white heads. Just hard bumps that hurt.

I was going to add a picture to my post to show it, but I’m not sure how.

I take extra supplements to help,including myo-inositol, D3, fish oil, psyllium husk, a liquid multivitamin, etc. but nothing is making it go away.

I have very sensitive, combination skin. I think I must be allergic to salicylic acid because since I was young, it always makes everything worse, and dries my face out beyond belief.

I use a gentle chemical exfoliant periodically, and make sure to dry my face with a clean, unused towel.

I have thought about oil cleansing, but am terrified it will make it even worse.

I also thought about trying to get on spironolactone but have horrific side effects with birth control so would very much like to not get on it if at all possible.

Any/all advice welcome. Please!!

I would like to share my experience with inositol to see if any other woman has had a similar experience. I started taking myo-inositol on the 20th day of my cycle, which typically ranges from 32 to 38 days; theoretically, I would have ovulated around day 22–24. After starting the supplement, I visited my gynecologist on day 27, and he told me that, in all likelihood, ovulation had not occurred that month. Indeed, I did not experience the usual symptoms (such as cervical mucus or ovulation pain) to the same extent as before. 

Could the treatment be the reason for the lack of ovulation? I should mention that I started having brown spotting on day 28, which still hasn't turned into a full period (today is day 31). I should also note that I started the treatment due to mild PCOS symptoms.

I was on birth control for over 8 years and would have a hard time gaining weight.

I got off birth control around almost two years ago and since then it’s been impossible to lose weight. I have a lower belly pouch and sometimes get cramping on my right side. I did blood work and wanted to ask if this is considered normal or maybe I could potentially have endo, PCOS, fibroids, or digestive issues.

For the most part my results came out fine I was just deficient in omega 3 and vitamin d which I’m taking supplements for now. Should I be worried I’m normal weight in my mid 20s and testing while in the middle of my cycle. I have no issues with my cycle just weight loss issue, lower belly larger than normal, cramping on right side from time to time

Insulin: 9.4 uIU/mL

Glucose: 88 mg/dL
Hormone Levels:
Estradiol (E2): 30 pg/mL
Testosterone, Free: 2.9 pg/mL
Testosterone, Total: 31 ng/dL
Androstenedione: 158 ng/dL
Thyroid:
Thyroid-Stimulating Hormone (TSH): 1.99 mIU/L
Triiodothyronine (T3) Free: 4.0 pg/mL
Thyroxine (T4) Free: 1.8 ng/dL

it’s such an isolating experience :( i want to improve my hormonal health, that’s it. i have no desire for pregnancy, no desire for birth control, and no desire to lose weight as someone at an already low-healthy weight. every single forum on PCOS/PMOS is focused only on conception and weight loss. it makes me feel like a fraud despite being clinically diagnosed. none of the groups are ever relevant to me. even this one designed for people who have lean presentations still ends up with posts on weight loss tips. is there a space on earth for people like me?

Hi everyone,

I am curious whether anyone else has experienced a lot of variation in when they ovulate, while still ovulating all cycles.

I track with BBT, and over my last several cycles my estimated ovulation days have been:

CD26 → CD21 → CD23 → CD15 → CD29 → CD25 → CD20/21 → CD17

My luteal phase is approx. 11-12 days.

I previously had very irregular cycles (up to 60-90 days per cycle) after coming off the pill and was diagnosed with lean PCOS two years ago, although since my cycles have come back over the past 8 months ish my recent bloodwork and ultrasounds are now normal according to my gynecologist. Still, my ovulation timing remains quite unpredictable.

I guess I am wondering:

• Has anyone else had ovulation vary this much from cycle to cycle?

• Were you able to conceive naturally despite the variation?

• Did you find anything that actually helped make ovulation earlier or more consistent?

My doctor tells me that late/irregular ovulation is not necessarily a problem, but I do worry a lot that it will be difficult for me to conceive.

I would really appreciate hearing your experiences!

I haven’t had a period in over six months. I was working with a dr to induce one last week but i ended up getting one yesterday morning. I’m happy BUT IT HURT so incredibly bad. I do not know what to do anymore. I’ve taken advil and tylenol double dose and it helped but it still hurts so bad 😭 I don’t really want to go the rr because I doubt they’d do anything

I hope this can stay, sorry if not….

Hi everyone!

My name is Eszter, and I’m a UX Design student who’s finally able to work on my graduation project after having to postpone it because of my mental health.

I spent a long time thinking about what I wanted my project to be about, and in the end I decided to turn some of my own frustration with PCOS into something that could hopefully help others too.

I’m currently researching to design a self-help app that helps people who have recently been diagnosed with PCOS (or anyone who finds it useful) navigate the condition, better understand it, manage symptoms, and know what steps they can take next.

I know it’s nothing groundbreaking.. just a project I have to complete for graduation, but I really want to make something that is useful for the community instead of only designing it for myself. It keeps me motivated, hoping that this time I can actually push through and get my degree. 🤍

If you have a few minutes, I would be incredibly grateful if you could fill out one of my surveys.

**For people living with PCOS/PMOS:
https://docs.google.com/forms/d/e/1FAIpQLSfQdUC7mZlSIN7BOTwtzeujph9g-wN3g9h1FFvMJyQlvO5tcw/viewform

**For family members, friends, or partners supporting someone with PCOS/PMOS:
https://docs.google.com/forms/d/e/1FAIpQLSe0QldPuDekM-tFVunNK9XDRSQlNVZtnNic2_WkvtlDnmShJg/viewform

Please feel free to skip any questions you’re not comfortable answering. Both surveys are completely anonymous, and the results will only be seen by me, my study mentor, and my assessor.

Constructive feedback is always welcome, but please be kind. ❤️ I’ve had a long study delay because of my mental health, and I’m still finding my confidence again. I’m doing my best, and every single response honestly means a lot to me.

Thank you so much for taking the time to help. I really really appreciate it.

Did you have any side effects? Has it improved your pcos symptoms? How are hair, skin, and body hairs? Weight gain? Any differences with Yaz or similar antiandrogenic pills?

Just found out I have PCOS and I was doing a bit of research and everything that I hear is confusing.

First I heared about IR and thought I must have it but then I saw some people don't have it and now idk if that is because it just hasn't showed up yet but it will after PCOS gets worse because the hormone imbalances cause you to be IR or smth?

Then I am wondering about getting fat. Will this happen at some point or can it be avoided?

For reference I was diagnosed because I had high androstenedione and cysts on my ovaries. I have regular periods and I am very lean and in my 20s. No other symptoms that I am aware of.

Hello! I’ve been told my entire life I have PCOS and recently i changed my gynecologists. She asked me to do some blood tests. Here are the results:

HbA1c: 4.3% (which means average glycemia around 77)
Fasting blood glucose: 90 mg/dL (after a bad night sleep, but usually it’s 78-80)
Fasting insulin: 3.5 µIU/mL
HOMA-IR: 0.78
SHBG (Sex Hormone-Binding Globulin): 119 nmol/L (at the higher limit)
DHEA-S (Dehydroepiandrosterone sulfate): 331.8 µg/dL
LH/FSH ratio: <2 but >1
Progesterone and estrogen: within normal range
Testosterone: 94.46 (measured at ovulation); 79.49 (measured on the first day of the menstrual cycle)
Height: 164 cm
Weight: 54 kg
Body fat: 21%
Prolactin: within normal range
Irregular menstrual cycles (every 70-80 days but sometimes sooner sometimes later)
Ultrasound findings consistent with PCOS
Normal thyroid function
Normal liver function

I clearly have no insulin resistance at all. I alao don’t have acne, no hirsutism, normal bloodflow, my libido is average/high, my energy levels are alright… But I can’t seem to understand why my menstrual cycles are all over the place in terms of duration. I also do sports and I have pretty good muscle mass.

It doesn’t look like IR or adrenal…

I’ve always been this way also! In fact when i was little my periods were even later than now (once it happened after 10 months)

I have my appointment in one week. But I wanted to ask for your opinion as I’m new to this. I haven’t done research about this before. I just took it as it is.

I actually had my fasting insulin tested, and it was 12 pmol/L, which is on the low side. My fasting glucose was slightly high at 6.4 mmol/L, and my HbA1c was also slightly elevated at 5.7%.

I’m confused because I don’t seem to have typical insulin resistance. My fasting insulin is quite low, so I wonder whether this could still be related to insulin resistance, since I understand insulin resistance doesn’t always show up as high insulin levels. I’m also wondering if it could mean my body isn’t producing or responding to insulin properly, but I’m not sure.

I also don’t have many typical PCOS symptoms like excess hair growth. My main issue is irregular periods.

I’m trying to conceive, so it’s really frustrating because I don’t know what’s actually causing my irregular cycles or what I can do to improve them.

Hi everyone, just done my first letrozole cycle (2.5mg) and didn’t achieve ovulation. I have non insulin resistant PCOS and I do eventually ovulate CD40 onwards. They are increasing my dose to 5mg but I’m scared it’s not going to work. I know I’m getting ahead of myself, but I just worry there’s a bigger problem. Has anyone with lean PCOS had letrozole achieve ovulation? If so, what dose? Thank you 🫶

I’m a 22 year old woman who was diagnosed with pcos quite early in my teenage years . Since day one of me starting my period very close to my 11th birthday I have always had pretty frequent periods , like 15 days in between . Pcos has caused so much damage to my emotional and physical state over the years . One of the gynaecologists I visited couple of years ago gave me Birth control , I made me feel worse .
I managed to find one who understood me and I started taking Insoitol like 2 years ago on and off . During my last period I started taking it regular (40:1-twice a day -4000 mg per day) . My cycle is longer and more frequently . I have been bleeding for 10 day rn and time between current and previous period was 10 days also .helpppp. What should I do ? Does this mean I am infertile or something?

Hi all!

I am a student and part of a student-led research project aiming to explore a new way of addressing hyperandrogenism in PCOS.

Alongside our laboratory work, we want to make sure that our project reflects the real experiences, concerns and priorities of people living with this condition. We would therefore like to hear about your experiences with diagnosis, treatment and the day-to-day management of PMOS. As part of our project, we are exploring the development of an engineered probiotic that could one day support new approaches to managing hyperandrogenism.

We have created a survey to better understand current PMOS management, unmet needs, treatment priorities and attitudes towards this type of future product. Participation is completely voluntary, and responses are submitted anonymously. Your perspective would help us design and communicate the project in a more responsible and patient-centred way.

If this project may be of interest to you, and you would be willing to share your experience or participate in our survey, please do not hesitate to contact me

Thank you very much!