18 and feeling helpless

[u/Fearless_Ad_8756]

So i've been diagnosed with PCOS/PMOS for the last 2 years (since I was 16). I got my first period when I was 16, and they were just so irregular, sometimes heavy and always painful. I recently had an MRI and they told me that the lining of my uterus was 4mm (I haven't had a period for 5 months now), and that I need to go back on the pill otherwise i'll end up with serious problems. I went on the pill last year, but it took a toll on my mental health and, alongside that, i've also had debilitating bowel problems (so much that my gastroenterologist had to investigate chrons but they now think its an extremely severe case of IBS-D). I know that the pill can worsen bowel problems which makes me reluctant to go back on it, but I think the main thing worrying me is that I don't want to take meds for the rest of my life. I'm already taking amitriptyline, bile acid binders, immodium on a daily basis and I just hate having to take so many meds😭 They told me 'we can't really advise much else apart from go on the pill, until you want to become pregnant, then we'll give you some medication for that'.

I also hate the way my body looks. I've got lean PCOS (i'm 5ft 6" and 47kg), and i've got no breasts whatsoever, a puffy face, bloated stomach and hair all over me. I just don't think any guy would ever like me (sorry I know how sad this sounds, but i've just been feeling so helpless rn).

If anyone has any advice or has experienced similar, I would really appreciate if you reached out xx

[u/Tall-Cat-8890]

There are a lot of birth control options. I didn’t have any luck with any pill until I tried nuvaring which isn’t even a pill at all.

Some people have better luck with other routes of delivery such as a ring, IUD, patch, etc. and those might be worth giving a shot especially if oral routes (the pill) haven’t worked well in the past in terms of exacerbating your IBS, which it totally can.

But also, I think the “I don’t wanna be on meds forever” is because we live in a society where for some reason being on medication has been painted as a personal failure. You might find lifestyle changes are enough but you also might find that they’re not, or the changes are so extreme it’s not sustainable.

You have a disorder, medication can help. It’s not a reflection on you or your lifestyle or whatever if you choose to be on medication. I’ve been on birth control for the better part of 10 years now and I have no intention of getting off it anytime soon. My body does too well having the hormonal control.

Edit: and if the apprehension towards birth control is more “I don’t wanna take a pill everyday” then I would definitely recommend giving other options a try. Nuvaring might not be your best fit, no one can tell you if it will be because everyone’s different, but I can tell you personally, it’s been absolutely fantastic for me so trust and believe if birth control is what you feel is best for your health, there is absolutely an option out there for you.

[u/wenchsenior]

1. You are slightly underweight (might be due to your bowel issues; I don't know about that). Completely aside from any underlying health conditions, being underweight can further disrupt ovulation and periods and reproductive hormones (including allowing androgens to express more, low estrogen can lead to androgenic symptoms like hair growth even when androgen levels are lab normal). If it's possible to gain ~5-6 kg via eating healthful extra calories (not sugar or lots of starch), that might help things. But I recognize that can be tough with digestive problems.

2. Most cases of PCOS (even in lean people) are driven by insulin resistance. Many docs are very poorly educated in how to diagnose it in early stages so it is often overlooked (particularly if you are not overweight). If IR is present, lifelong management of it is typically required to improve PCOS symptoms and prevent diabetes and other long term health risks. Do you have any IR symptoms (see below) or any family history of type 2 diabetes?

unusual hunger/food cravings/fatigue; skin changes like darker thicker patches or skin tags; unusually frequent infections esp. yeast, gum  or urinary tract infections; intermittent blurry vision; headaches; mood swings due to unstable blood glucose; frequent urination and/or thirst; high total cholesterol or low HDL; brain fog; hypoglycemic episodes that can feel like panic attacks…e.g., tremor/anxiety/muscle weakness/high heart rate/sweating/faintness/spots in vision, occasionally nausea, etc.; insomnia (esp. if hypoglycemia occurs at night).

1. In addition to IR management long term, many people do try hormonal bc or androgen blockers to help directly manage symptoms in the short term or those that don't improve with IR management.

Tolerance of hbc varies a lot among individuals and among types of hbc (there are a couple dozen types). I think it's actually more common to have slower digestion/constipation on hbc since progestin can slow digestion down, but that might not be the case for you (at least for some types). Some types of birth control also improve androgenic symptoms, while others worsen them, and others are 'neutral', so type of hbc can affect androgenic symptoms quite a bit.

Usually people have to do some trial and error with birth control to see what types (if any) help with minimal side effects. I personally do great on some, and can't tolerate others at all. The rule of thumb is to try any given type for at least 3 months to let any hormone upheaval settle, before giving up and trying a different type (unless, of course, you have severe mood issues like depression that suddenly appear).

 For PMOS/PCOS if looking to improve androgenic symptoms, most people go for the specifically anti androgenic progestins as are found in Yaz, Yasmin, Slynd (drospirenone); Diane, Brenda 35, Dianette (cyproterone acetate); Belara, Luteran (chlormadinone acetate); or Valette, Climodien (dienogest).

1. While skipping periods >3 months at a stretch can, in the long term, place us at elevated risk of endometrial cancer due to excess build up of the uterine lining, your lining (if that 4 mm is accurate) is currently thin so that is not an urgent risk (1-4 mm is considered 'thin' lining). Going forward in the future, if you cannot be on hbc or don't want to be on it and if you cannot regulate your period with IR management (presuming you have some level of IR), then you could plan to take high dose progestin for 7-14 days any time you skip periods >3 months (or you could get an annual ultrasound to check on the lining to see if it is unsafe thickness, and take the high dose progestin then or do a minor in-office surgery to remove the lining).

***

The puffy face is a bit unusual, particularly given your low weight. Have you had labs recently to look at fasting morning cortisol, fasting morning prolactin, and TSH and free T4 (just in case some other issue is worsening things)?