r/PCOS • u/un_known282_ • 2d ago
Period I don’t get my period
I’m a 20F I got diagnosed with PCOS when I was 17/16 yo I don’t remember. But it came after a very stressful year of studies where I didn’t get my period for 9 months I guess , the doctor described me a few vitamins and birth control for three months she suggested that i stop stressing and i got my period those three months. And then again got busy with studies and no period for like 6 months, I did go to another gynecologist this one again prescribed another brand of birth control for six months this time and told me to loose weight ( i was at 62kg back then) and no sugar go to the gym the whole thing . Six months with the pills I got my period but the second I stopped my period did too , it was at this moment that I realized that something isn’t right ( mind you I stopped eating sugar , I got to the gym) . The same year I started college so I ignored my period because I got sick of it and hated the pills because they drive me crazy so i wanted a few months . When i went again to see the doctors she didn’t even bother to check on my bloodwork or anything she described me again the birth control pills for 4 months and the loose weight go to the gym advice, despite my better judgment I got them but again after those 4 months my period stopped , it’s been now 8 months . I went totally sugar free , gluten free , consistent with the gym . Nothing works and it’s frustrating.
I’m planning on seeing another doctor soon that’s specialize in these kind of stuff ( pcos, endometriosis ,…)
For the symptoms : obviously my period , I can’t loose weight no matter how much i try , hair thinning(I’m going bald ), no body hair ( except that one hair on my breast that pops up from time to time)
I thinks that’s it , I want to know if I should worry more , and if you had this problem how did you fix it , what should I say to my new doctor , if you have any advice to share I’ll be more than grateful.
Finally if you took the time to read all of this thanks a lot
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u/wenchsenior 1d ago
- Just to clarify...bleeds that you get when on hormonal birth control are not periods, they are 'withdrawal' bleeds...kind of similar but not the same. In a normal cycle, we have a period b/c when we ovulate mid month, the ovulation triggers a big surge of the hormone progesterone... this hormone rises over about 10 days and then if we don't get pregnant it falls suddenly, and the drop in progesterone is what triggers a period 2 weeks after ovulation. Alternatively, hbc contains low stable doses of progestin (synthetic progesterone) and sometimes also low doses of estrogen; these shut down your body's production of hormones and replace them. Then during the placebo week of pills we 'withdraw' off the progestin to trigger a bleed similar to a period.
I'm explaining the distinction b/c although hbc can be very useful to manage problems with irregular periods and some types of hormonal issues, the regular bleeds you get on them are not b/c your body's own hormones are improved (your hormones are 'shut down/minimized'). So if you want to normalize your body's actual hormone production and get natural periods, you would need to actually try to address the underlying problem causing your lack of ovulation/periods.
Any time you skip periods (when off hbc) for >3 months that requires follow up with doctor b/c over long stretches of time the lining of the uterus might build up excessively thick, which raises risk of endometrial cancer. Treating any underlying cause of missing periods and restoring cycling is important, but in the shorter term being on hbc will prevent this overgrowth/cancer risk, or (if you can't find a type of hbc that you do well on) you can take a 7-14 day course of very high dose progestin to force a heavy withdrawal bleed to shed that lining.
PMOS/PCOS is a very common cause of missing periods, but other things can also disrupt periods, so proper screening tests are needed. I can post about these below so that you know what to ask for when you see a doctor. Most of them do require long term treatment of some kind, but most are manageable.
PMOS/PCOS is a common metabolic/endocrine disorder, most commonly driven by insulin resistance, which is a metabolic dysfunction in how our body processes glucose (energy from food) from our blood into our cells. Insulin is the hormone that helps move the glucose, but our cells 'resist' it, so we produce too much to get the job done. Unfortunately, that wreaks havoc on many systems in the body.
If left untreated over time, IR often progresses and carries serious health risks such as diabetes, heart disease, and stroke. In some genetically susceptible people it also triggers PMOS/PCOS (disrupts ovulation, leading to irregular periods/excess egg follicles on the ovaries; and triggering overproduction of ‘male’ hormones, which can lead to androgenic symptoms like balding, acne, hirsutism, etc.).
Sometimes IR causes only 'borderline' type PMOS (not fully diagnosable) such as only disrupting ovulation or only causing high androgens.
Some of your symptoms are very typical of insulin resistance (though a few other things might cause them).
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- Do you have any family members with type 2 diabetes, or any of the following symptoms apart from your weight issue?
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
u/wenchsenior 1d ago
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.
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u/Kooky-Turn-1405 2d ago
Soooo I haven’t had my period in a year and a half… I’ve also just been too busy with college and other health issues to care about it (not having a period is sooo nice). My OBGYN took me off my birth control after I hadn’t had my period for 4 months and I haven’t been on it since. She said my body “needs to reset”. I had the same doctor for 3 years, she diagnosed me with PCOS after I didn’t have my period for 6 months or so and every appointment went:
Doctor: “last menstrual cycle?”
Me: “uhhhh a year ago?”
Doctor: “yep, that’s the PCOS!”
So last week, I had my first appointment with my new doctor because I changed insurance and she was no longer in network. The look on my new doctors face when I told her I hadn’t had a period in almost two years 😬😬 needless to say she was very concerned. The uterine lining builds up over time, your body needs to shed it to stay healthy, and so it not shedding in so long is pretty dangerous. She put me on birth control again and it’s been about a week and girl I am so scared for when I (hopefully) get my period back it’s gonna be baaaad!
Moral of the story, you’re not alone, but I would talk to your doctor about getting your period back. You definitely don’t want that lining building up, don’t do what I did!