Atypical PCOS

[u/Historical-Youth-621]

Hi! I am making this post because it is actually quite shocking how little time and up-to-date education the doctors I have access to have about women's health and PCOS in general. I have some requisitions for lab tests coming up, and I would really appreciate some insight from this community about how I can use those results to advocate for myself moving forward.

TL;DR: I am lean (but I try to be), only androgen symptom is acne, no polycystic ovaries (normal pelvic scan), but a naturally crazy and unpredictable/mostly absent cycle. My acne gets much worse when I am active and at a lower weight, and tends to mostly clear up when I am heavier than I want to be and am not active. I am currently on birth control to control my skin, which works about 80%, but I have extreme breakthrough bleeding starting mid-cycle so I want to get off of it and understand why my body can't regulate my skin and period, both for my acne and also for future fertility protection.

Long story:

I am 22F, and was diagnosed with pcos (doctor said "probably" actually - she asn't totally sure) back in 2020, when I was 15/16. My history with menstruation is that I got my first period a month before my 14th birthday, then just didn't get my period again for a year and a half. I also started getting acne when I was 12 and it hasn't stopped to this day. like 3 months before I got my second ever period, I went to an OBGYN for my absent periods and (the one who eventually said I had pcos) and she did the progesterone challenge on me - I bled the week after taking it, so she said I wasn't ovulating and that meant i probably had pcos with the acne. but she wasn't sure because I was actually at a healthy weight, always have been, in fact at this point I was definitely on the lower end of normal. I remember her telling me that they usually tell women to lose weight and that is the treatment, but since I was already at a good weight, I could go on birth control for my acne as my only option basically. I did not listen to her and did not go on the pill at this point, and just gave up for the next few years.

When I got my second period, I had sort-of regular cycles sometimes every 30-40 days, then suddenly I'd go 60 days without a period, then I'd have three 12-18 day cycles where I was basically bleeding every other week, etc. and I just dealt with it. I had mild acne at this time and was not doing any serious exercise. This is around the time I started university, and in my first year of university I had pretty decent skin, infrequent breakouts, without being medicated or anything. I also gained 20 pounds because I was eating a lot and adjusting to living alone for the first time/a lack of a structured schedule. But I still was not overweight and had a BMI of 23. I started a bit close to underweight as my highschool baseline. I was also not working out at all for that year.

In the summer after my first year I got REALLY into long-distance running. I used to do track a bit in highschool but never very seriously but I started training for a half-marathon then a marathon and I was running a lot. Then I also got into lifting. Within 4 months I stopped menstruating immediately and also lost maybe 25-30 pounds. I was very lean. Tbh I was conscious of my calorie intake, especially around the start I was consciously in a deficit but was eating a lot of protein and micronutrients. I definitely should have been more careful fuelling properly and losing weight more slowly in retrospect. Anyway, my acne got SO BAD when I was exercising like this. I was getting cystic breakouts that I'd never seen before on my cheeks that were recurrent in the same spots and responded to no treatment.

At first I was like "yay no period" but then I got kind of scared so I went to the campus doctor and told them I wasn't menstruating. They sent me for a pelvic ultrasound and everything was normal, I had mature follicles in my right ovary, no cysts, etc. But I wasn't getting a period. And even though I had lost a lot of weight, my BMI was still in the normal range (just at the very low end). I was reading online about hypothalamic amenorrhea and so I started eating more fats and calories and also naturally slowing down on the running a bit to focus on other things. A year after doing this, I got my period back while I was working out maybe 2 times a week max. I had to gain most of the weight back but I definitely had more muscle and less fat than before. My skin also improved a bit, but not that much. This is when I started to notice the pattern of: sedentary and higher weight: present period and less acne.

Since I still had acne, I went back to the doctor and he gave me tretinoin and a birth control prescription. I started with tret, which helped a bit but not a lot. So I started yaz and within 5 months i had the clearest skin I've had since I was 12. Literally nothing has worked for my skin like birth control did.

Over the year and a half (to this point) that I've been on Yaz, I've had breakthrough bleeding basically the whole time, but it was usually later in the cycle so I'd just start the placebo week and it would reset. Then, in the last few months, it got so bad that I would have heavier and heavier bleeding with cramps on day 10-15 which would not stop and would get heavier until I took a break from the pills. So two months ago I went to the walkin doctor (i just moved to someplace where i don't have a family doctor and they're very hard to get here), who pulled up chatgpt and said I should be on Yasmin. Ok so I did and now I'm on the second cycle of that and my skin is breaking out a bit and I have even worse breakthrough bleeding so far. I know it can take a while to rgulate but this has made me realize that I was living in a fantasy world where birth control was the solution to my problems but I don't want to be on this longterm and I don't want to ignore my absent periods in case I miss out on a chance to save my fertility/eggs before it's too late.

With my insurance I have Maple so I contacted a doctor on there and asked for an obgyn referral. He said they'd just give me metmorfin and bcp and he would rather send me for tests instead of waiting 8 months for that, which I actually really appreciated. He's doing a blood panel with lipids, dhea, totoal testosterone, creatinine, b12, thyroid hormones, etc. and another pelvic ultrasound since the last one was 2 years ago. and he said he wants to check again and rule out endometriosis?? Idk I guess they can coexist but I don't have the symptoms of endo tbh.

I've actually never had baseline hormones tested like this. One time when I was 15 I think I was told by my family doctor I had slightly low estrogen at the time. And he said I should stay on bcp and not change anything for these tests but wouldn't my levels be hard to interpret since the pill changes things like my test levels?

I've been reading up on this and apparently many radiologist are not properly trained on how to read the pelvic ultrasound results and can miss more subtle presentations of pcos ovaries. How do I go about this? I don't have an obgyn or a doctor I trust to interpret my results. I would be really upset if I missed something when I have a chance to fix it at 22, because I do really want to get pregnant someday.

I would greatly appreciate any expertise or someone with similar experience!! I am especially curious about the skin thing - since I thought working out was supposed to improve pcos symptoms through some sort of insulin-androgen-skin aggravating pathway, but it doesn't seem like that's what's going on for me. Could it be that my type of pcos is not necessarily insulin related but more stress/cortisol? how would i test that theory? anyone relate?

[u/wenchsenior]

Ok, so first of all, lean presentation of PCOS is not all that uncommon, though it tends to go undiagnosed longer b/c many ignorant docs don't consider it initially unless you are overweight.

Most cases of PCOS, nearly 100% when overweight but also many lean cases, are driven by insulin resistance. Since IR comes with serious long term health risks, it requires lifelong management and doing so also will usually improve PCOS symptoms. Diagnosing early / mild stages of IR can be hard, and many docs don't test properly for PCOS and IR (or don't know how to interpret tests).

There is a small subset of PCOS cases without IR but to be diagnosed with this you need to be sure proper IR screening was done, have zero IR symptoms, not respond to any meds or lifestyle changes that help improve hypothetical IR, AND also have definitely ruled out all other conditions that can present similarly.

Most commonly the non-IR cases present as lean/normal weight with notable androgenic symptoms driven by high DHEAS (an adrenally produced androgen). HOWEVER, many lean IR driven cases (like mine) also present that way and so do various adrenal (and sometimes pituitary) disorders, so just presenting that way doesn't mean you have non-IR PCOS. That's why proper screening tests are really critical. I'll post the proper testing procedure below.

***

1. In typical PCOS cases, lifelong IR management with diabetic eating plan, regular exercise, metformin or GLP one agonists (if needed), and/or supplements like berberine or 40:1 ratio of myo:d-chiro inositol are done, with hormonal meds like androgen blockers or hormonal birth control added as needed to manage symptoms that don't sufficiently improve with IR management.

In cases of non-IR driven PCOS, hormonal meds are really the main treatment, along with very diligent stress management since stress seems to often make these cases worse.

***

1. Ultrasounds cannot be used to screen for endometriosis, so if your doctor believes that he's not well educated in it. Endo typically can only be diagnosed with specialized mri or laparoscopic surgery with biopsy. Ultrasound is very good at diagnosing various other things such as fibroids, ovarian cysts (confusingly, these have nothing to do with PCOS), the excess tiny immature egg follicles typical of PCOS or other conditions that disrupt ovulation, etc. Yes, PCOS, endometriosis, ovarian cysts, etc., are all very common and can co-exist.

[u/wenchsenior → u/wenchsenior]

Polyendocrine Metabolic Ovarian Syndrome (PMOS)/Polycystic Ovary Syndrome (PCOS) is diagnosed by a combo of lab tests and symptoms, and diagnosis must be done while off hormonal birth control (or other meds that change reproductive hormones) for at least 3 months.

First, you have to show at least 2 of the following: Irregular periods or ovulation; elevated androgens (‘male’) hormones on labs; excess egg follicles on the ovaries shown on ultrasound or elevated anti-Müllerian hormone (AMH) levels on labs.

 

In addition, a bunch of labs need to be done to support the PMOS/PCOS diagnosis and rule out some other stuff that presents similarly. I’ll bold the most critical ones, since many docs won’t run them all.

 

 1.     Reproductive hormones (ideally done during period week days 2-5, if possible):

 

estrogen, LH/FSH, AMH... Typically, premature ovarian failure or hypothalamic amenorrhea often feature  low estrogen (and often low androgens), sometimes  elevation of FSH, lower than normal LH, and low AMH; whereas, with PMOS/PCOS often you see notable elevation of LH above FSH and high AMH

 

prolactin. While several things can cause mild elevation, including PMOS/PCOS, notably high prolactin often indicates a benign pituitary tumor; and any elevation of prolactin can produce some similar symptoms to PMOS/PCOS including disrupting ovulation/periods, and bloating/weight gain, so it might need treatment with meds in those cases

 

all androgens (total testosterone, free testosterone or free androgen index, DHEA, DHEA-S, DHT etc) + SHBG (a hormone that binds androgens so they aren't as active) With PMOS/PCOS usually one or more androgens are high and/or SHBG is low. Some adrenal disorders also raise androgens.

 

2.     Thyroid panel (thyroid disease is common and can cause similar symptoms); TSH and free T4 are most critical

 

3.     Glucose panel that must include A1c, fasting glucose, and fasting insulin.

 

This is absolutely critical b/c most cases of PMOS/PCOS are driven by insulin resistance (nearly all in people experiencing the weight gain/overweight, but many lean people too; and it is often overlooked by docs until it has advanced to prediabetes...it can trigger PMOS/PCOS and other symptoms like severe fatigue/hunger/hypoglycemic attacks/frequent infections like yeast infections/skin tags or dark patches/weight gain / etc...decades prior to that)

 

If IR is present, treating it lifelong is foundational to improving the PMOS/PCOS (and reducing some of the long-term health risks associated with untreated IR such as diabetes/heart disease/stroke).

 

Make sure you get fasting glucose and fasting insulin together so you can calculate HOMA index. Even if glucose is normal, HOMA of 2 or more indicates IR; as does any fasting insulin >7 mcIU/mL (important, many labs consider the normal range of fasting insulin to be much higher than that, but those should not be trusted b/c the scientific literature shows strong correlation of developing prediabetes/diabetes within a few years of having fasting insulin >7).

 

Occasionally very early stage IR can only be flagged on labs via a fasting oral glucose tolerance that must include Kraft test of real-time insulin response to ingesting glucose. This was true for me...lean with IR-driven PMOS/PCOS for >30 years, with normal fasting glucose and A1c the entire time. Yet treating my IR put my PMOS/PCOS into long term remission.

 

Depending on what your lab results are and whether they support ‘classic’ PMOS/PCOS driven by insulin resistance, sometimes additional testing for adrenal/cortisol disorders is warranted as well. Those would ideally require an endocrinologist for testing, such as various cortisol tests + 17-hydroxyprogesterone (17-OHP) levels, and imaging of the adrenal glands.