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My story starts at the ripe age of 15 years old. I never got a period naturally unless I was literally living 24/7 in the same room with someone who had their period at that time. (ex. sleep away soccer camp & sharing a dorm room with someone on their period) the solution? my doctor put me on birth control, ugh. to this day (I am now 26) I am not able to get my period unless I am on birth control. I have been to doctors all around the country and not a single doctor can “figure me out.” oh & the best part – I have a cyst on my pituitary gland that no one thinks is causing any problems yet I have to get it checked every 6 months – 1 year. My story is really crazy and this is just the beginning of it. If anyone has a similar story or even just understands what it’s like to live basically your whole life getting written off by doctors I would love to chat!
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OH MY GOSH JENNA A.. I think we are the same person. I got my period one time naturally when I was 13ish(?) and then I have never gotten it naturally ever again. The doctors told me right away I needed to just go on birth control and have a fake period so I can bleed every month and prevent a lining from building up in my uterus. But I don’t love birth control and have been on and off of it for years. I am also 26.
I ALSO have a tumor on my pituitary gland and need to get it checked by MRI every 6-12 months. However, my doctors have told me this may be linked to me not getting a period and is linked to all of the symptoms I have related to hypothyroidism. I have never been diagnosed with hypothyroidism but I am certain I have it since my mom and sister have it (it’s genetic) and I have every symptom (fatigue, constantly freezing: cold hands and feet, constipation, dry skin, etc)
I have seen so many endocrinologists and OBGYNs and have multiple blood tests, urine tests done over the years and my results are always changing (sometimes I have low estrogen, sometimes its normal, sometimes I have super high prolactin, sometimes its normal, sometimes my cortisol levels are super high, sometimes they’re normal)
I also have PCOS: cysts on my ovaries, no periods and high androgen levels (testosterone) but of course the only ‘cure’ for PCOS is birth control.
It’s hard because I just want to be normal with no medications. I try to look into holistic methods like changing my diet (no gluten, no dairy), taking supplements/vitamins to help manage symptoms, etc. but its hard because I feel like nothing is working.
Also my main concern is having kids one day. Obviously not having a period is not a positive sign for fertility and I am nervous I will go through a lot of trouble when trying to conceive. When I say this to my doctors all they say is ‘we won’t know until you try’ but I want to know now even though I probably won’t have kids for another ~4 years.
I feel like there must be SOMETHING I can do now to help with these issues, right?! Doctors really don’t seem to care!
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I wish I had an answer or something more helpful in response but– me too! I wasn’t getting my period so at 18 years old, my OBGYN prescribed me hormones to “induce” my menstrual cycle. It worked, but it has never been a normal cycle. When I am regularly on the pill, I will get my period. As soon as I come off, which I like to do every now and then for hormonal reasons, I rarely will get my period. Every time I go to the gyno, she seems to listen to my concerns but it always comes down to her telling me its because “I run a lot”, giving me a prescription for progestin/”mini-pill”, and telling me I should go back on my BC. Frustrating!! Will update if I find any answers.
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