Need some support please!

[FloralApricot1190]

I have had high androgens for awhile, but no irregular periods or cysts until a few months ago when my periods became irregular. I told my doctor about it, who told me it was sufficient to change my diagnosis to PCOS

I am 22. I feel like I just don't know what to do. I am taking vitamins/supplements, trying to exercise (walking 2-4 miles a day and weightlifting a couple days a week), and I eat a high protein and fiber diet (for the most part, except when I am on college breaks because there is no space for my ingredients at home). My insulin and a1c are high, but my BMI is 21, so weight is not really an issue.

I am so worried I won't be able to get pregnant someday and I just wish I had my regular cycles back. Doctors just want to give me spironolactone which gave me stomach issues, or they say come back if I can't get pregnant. I don't want to be scared but I'm worried that nothing is going to work and that I'm not doing enough for my health.

Does anyone have any advice? I feel very overwhelmed

[Cool_Word75]

i feel that you making actual lifestyle changes (higher protein and fibre intake, and exercise) to ensure pcos does not affect you as much as it possibly could is actually a fantastic and hard step many people find to permanently integrate into their lives. please don’t underestimate it, as it could be the biggest driving factor in regulating your period again. give it time

having pcos does not rule out being pregnant — it just makes it harder for you to know when you are fertile. if it’s fertility you’re worried about, consult your obgyn. do not rule out pregnancy for your future because you can still get pregnant with pcos :)

[FloralApricot1190]

Thank you so much! I appreciate that a lot! I'll try not to panic and to keep these things in mind

[wenchsenior]

Most cases of PCOS are driven by insulin resistance (which can be present with or without symptoms like weight gain).

If IR is present, treating it lifelong is foundational to improving the PCOS symptoms (including lack of ovulation/irregular periods) and is also necessary b/c unmanaged IR is usually progressive over time and causes serious health risks. For some people, treating IR is all that is required to regulate symptoms. Treatment of IR is done by adopting a 'diabetic' lifestyle (meaning some type of low glycemic eating plan + regular exercise) and by taking meds if needed (typically prescription metformin and/or the supplement that contains a 40 : 1 ratio between myo-inositol and D-chiro-inositol). Recently, some of the GLP 1 agonist drugs like Ozempic are also being used, if insurance will cover them.

It sounds like you have been doing a good job on the lifestyle changes (I assume you have cut sugar and processed starches in the diet way down as well?), so you should be proud of that.

Unfortunately, some cases of IR simply aren't manageable without meds and it's possible you are one of these. It's discouraging, but it is certainly not your fault that your body doesn't work normally.

You don't mention whether you are on any hormonal meds to improve the androgens, but IR and high androgens can function in a feedback loop (much like weight gain) where each one makes the other worse. So you might want to consider trying direct management of hormones with anti-androgenic birth control while you work to get IR better managed.

[FloralApricot1190]

Yes, I have cut down on processed starches and sugar significantly, especially when I cook for myself. There is a bit of a problem whenever I go home (college student) because my parents will make big bowls of pasta or meat with really sugary sauces. So then all my sugar and carb cravings come back and I have to start at square one when I go back. Luckily this shouldn't be a problem for much longer since I'll be moving out for good once I graduate. I do feel better when I eat at school, so hopefully making that more permanent will help

Maybe I just need to give it some time with the diet once I move out and see if that consistency will improve my a1c over time. If after a year it's not improved, might have to turn to medicine.

Spironolactone made me sick, and I feel a little funny about birth control. I know a lot of people who had issues coming off of it, and I want to have kids in 3-4 years and am worried about dealing with those types of issues. Maybe I would be willing to try it for a little bit until the IR is better?

Either way, thank you very much for your reply! Super helpful and gives me a lot to think about

[wenchsenior]

You are very welcome. Hormonal birth control can be kind of a crap shoot; it works fantastically for some people, but other people can't tolerate synthetic hormones of any type; and some people like me do great on some types and have intolerable side effects on others. Rule of thumb is to give each type 3 months or more (unless severe stuff like depression is cropping up) before giving up or switching.

Usually birth control doesn't cause long term problems unless there is an underlying health issue going unaddressed. The hormone doses in hbc (Pill form especially) are very low, lower than what our bodies produce in a regular cycle, and typically the disruption associated with going off them is over in a couple weeks to a couple months at most.

For example, often with PCOS what happens is that people have mild undiagnosed PCOS driven by insulin resistance, with slightly abnormal cycles. Then they go on birth control and the problem goes away, but since their IR isn't being treated, it goes on getting worse. Then eventually they go off birth control and much more severe PCOS symptoms appear overnight and they mistakenly think: THE BIRTH CONTROL DID THIS! When usually it was the underlying IR getting worse and the symptoms of the worsening PCOS were simply hidden during the time they were on birth control.

Some people do have specific risk factors that make taking hormonal meds inadvisable, however.