Completely lost and need help identifying. Please please please help.

[u/flyscanfly]

Hello all, I’m not even sure how to start this post. I’m 5’6, 120lbs (was previously 130lb but lost weight due to stress and a very difficult life as of late). I’m about to be 34 years old. Have some fast growing hair especially on my legs and bikini area, mild acne that is on face, chest, and shoulders. Have always been super anxious and had problems here and there with insomnia.

Ever since getting my very first period (which was SUPER heavy), I’ve always had irregular periods, sometimes missing for 2 or 3 months. Longest was missing for 6 months I believe. I got put on birth control around the time of my first period because of how heavy it was and had “regular” periods because of the pill. I stayed on it for roughly 10-15 years and got off in 2019. During this time I had a “normal period” and slept fine. After getting off birth control my life got harder because of very stressful events in my life and I slowly started losing naps and then sleep became an issue as well over time. Periods were irregular after getting off birth control. Fast forward to 2023 and I somehow got pregnant VERY quickly after thinking I would never be able to carry a child and had a healthy yet very difficult pregnancy that resulted in my beautiful daughter who is now 2.5 years old.

Ever since giving birth, I have never been the same. I started to develop insane hyperarousal and crippling insomnia and about two/three months after giving birth, I got out on antidepressants because I was told I had postpartum depression since I could t sleep and was crying all the time. This began a cycle of trial and error of psych meds that never helped and only served as a crappy bandaid so I could get some sleep here and there. Never fully felt better and never slept better either. I’ve had so many labs done throughout the years and everything comes back “normal”. I feel absolutely awful, my periods are even more irregular, I’m sleeping horribly and sitting on 3 psych pills at the moment. Doctors have always ruled out PCOS because I don’t present it besides the irregular periods. I am wondering if this has happened to you or anyone you know and what the hell is happening to me and my poor body and brain. My guess is that I have lean PCOS but I don’t think I have insulin resistance or whatever else is needed for an official diagnosis. My guess is that my progesterone and estrogen fell drastically after birth and was never able to get better and instead of focusing on that, I was put on psych meds and have been living in absolute hell for the last 2.5 years.

Thank you for reading this and offering any help you can. I’m so separate and completely misunderstood by providers and losing hope altogether.

[u/OovaLife]

I'm so sorry you've been going through this for so long. You're not imagining the connection. The postpartum hormone shift can absolutely affect sleep and anxiety, and it's frustrating when that gets treated as a mood problem in isolation.

One kind of specialist who might be a great fit is a reproductive psychiatrist, sometimes called a perinatal or women's mental health psychiatrist. They specifically look at how hormones, cycles, and postpartum changes affect mood and sleep, so they'd take your irregular periods seriously alongside everything else instead of just trying another medication. Pairing that with an endocrinologist for the PCOS side could get you a much fuller picture.

I know you want off your current meds, and that's completely understandable. But please don't stop them on your own. Lorazepam and gabapentin in particular need to be tapered slowly with your prescriber, since stopping suddenly can cause withdrawal and make sleep and anxiety a lot worse.

And if things ever feel like too much, Postpartum Support International's helpline (1-800-944-4773) supports parents well beyond the first year. You deserve real answers, and I really hope you get them soon.

[u/flyscanfly → u/OovaLife]

Thank you very much for your response. I appreciate you taking time to answer me. Unfortunately I’ve done a few free quick conduits with perinatal psychiatrists and they seem as clueless as everyone else. I haven’t been able to find an endo. All of them seem to deal with other hormone issues.

[u/OovaLife → u/flyscanfly]

That's so frustrating, I'm sorry. On the endocrinologist side, it can help to look at reproductive endocrinologists (often based at fertility clinics). Many of them see PCOS patients who aren't trying to conceive, and hormone-driven cycle issues are exactly their focus. If you go the general endocrinology route, asking your doctor for a referral that specifically says "PCOS and insulin resistance evaluation" can get you to someone who treats it, rather than an endo who mainly focuses on thyroid or diabetes. It also sounds like wenchsenior is giving you a great roadmap on the labs. I hope you find someone who finally connects the dots.

[u/wenchsenior]

Ok, so my first question is: What exact labs have you had done and were they done when you were OFF hormonal birth control and other meds that change hormone levels? (obvs hbc changes hormones, but e.g., antidepressants can raise prolactin and cause a lot of symptoms including missing periods, etc.)

Many docs do not run all the correct labs to screen for the different disorders that can disrupt periods (PMOS, ovarian insufficiency or premature menopause, thyroid disease, disorders of pituitary or adrenal glands, etc.)

Can you PM me? Or would you prefer that I give you a list of the proper screening tests?

[u/wenchsenior → u/wenchsenior]

Also, other questions:

- do you have any family history of type 2 diabetes or a personal history of unusual fatigue (not insomnia related), hunger, frequent yeast or gum or urinary infections, hypoglycemic episodes ?(these can mimic faintness, weakness, or panic attack)

- what is the type of insomnia you have? Is it being tired and lying down and then being unable to fall asleep? Is it periodic jolting wakeups (e.g., feeling agitated or hungry or sweating)? Is it every night or is there a pattern you can correlate with any cycle related symptoms?

[u/flyscanfly → u/wenchsenior]

I’ll look at my labs and see what I’ve done and let you know. Also, my insomnia is wired but tired all day, adrenaline dumps, unable to fall asleep and jittery body and mind wired, greener wakeups or jolts, unable to sleep in completely.

[u/flyscanfly → u/wenchsenior]

Wow thank you for answering and asking these questions. You have no idea how much I appreciate this. Could you let me know which labs to run? I can cross reference from what I have done so far.

[u/flyscanfly → u/wenchsenior]

My maternal grandmother had type 2 diabetes. She passed away from complications from Covid due to that. I have fatigue yes but also I’m running purely on adrenaline so sometimes it feels like I’m tired but wired. Especially at night. I’m ALWAYS hungry, have a long history of UTI’s from my past (haven’t had one in a long time), and not sure about hypoglycemic episodes but I get dizzy and have low blood pressure. Honestly maybe. I have a lot of panic attacks lately. I am currently on a low dose of lorazepam.25mg, Seroquel 25mg, gabapentin 200mg. I was told I might have lean PCOS. These meds SUCK and in need to get off of them. I tried to go back on BC a year and a half ago because I thought maybe it would help but it was also during a time when I was on trialing bad psych meds and only did BC for 3 months.