This is my “story” – isn’t it amazing how all of ours seem to be somewhat different, but very much the same, too? Ahh, my cysters.

As a girl of 11, I had my first period, which lasted 3 months. I was scared, bewildered, and basically thought my life was over. But my mother hadn’t informed me of much up until that point, so I didn’t know how abnormal it was. Needless to say, when my mom saw how many pads I’d gone through within 2 wks, she asked me if I was still on my period. After another 2, and I still hadn’t stopped, she brought up the subject to her OBGYN at one of her own appts. He assured her it was completely normal (what a moron!) and that sometimes it takes even a few years for girls to even out.

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I was just relieved when it finally stopped, and the entire next year was period-free. At 12 I cycled again, this time fairly normally, if I remember correctly, except it was a black, thick, blood, but I had no idea what it was supposed to look like. (I encourage mothers to talk about these things with their daughters! We forget that children aren’t mature or informed enough to take care of their own health.) My early teenage years, I would have heavy periods, and I began developing dark, velvety patches on each side of my neck, knuckles, ankles, underarms, groin…acanthosis nigricans. My mother took me to a dermatologist, who said for me to wash better and to use peroxide. (Whaa?!)

By 16, I was a screwed-up mess. I gained 60 lbs the year I turned 17. I may not cycle for months, but then have a heavy flow that might last quite awhile. My husband and I married very young (I wasn’t quite 18 – I know, it’s shocking) and the month before was the 1st dr appt I had on my own. I told him my problems, and he put me on the pill, but offered no other advice.

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He just recommended getting more regular. I had a serious talk with my now husband, and told him it was my personal opinion I wouldn’t be able to have children. My cousin who was several years older than me had suffered from what we now know as PCOS, and I knew her road all too well.

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The 1st month on the pill was hellacious! Here we are, honeymoon mode, and I’m having the worst period of my life. I now know it was cleaning out my uterus, which was thickened, and wish I had stayed on the pill. But one month was all I could take! I stopped taking it, and for 3 years, we TTC. No luck. Babies everywhere! It was heartbreaking; we all know what infertility does to us emotionally.

I’ve left out many symptoms, but these are what I suffered from – some worse at some times than others: infertility, acanthosis nigricans, alopecia, hirsutism, annovulation, weight gain, headaches, irregular periods, nightmares (did you all know this was possible?!), odor from my nose and ears (disgusting, I know), hot flashes, nightsweats, slight memory loss, and depression (I wonder why!). I’m sure I’m forgetting a few things. There are more symptoms than you might realize. Not that I’m an expert, of course. My personal favorite is shaving my upper lip, sideburns, and chin twice a day. Can’t get more girly than that.

My husband was an emotional wreck, as was I. He started drinking, I think just to get away from our depressed house. I couldn’t help him; I could barely help myself. We split up, but never got divorced. I still loved him, but he moved on. During the time we were apart (9 yrs), I discovered PCOS through reading an article in a magazine, asked my dr, and started seeing an endocinologist.

But I soon got discouraged from not seeing a significant difference, and got off the Metformin and Spironolactone. I did foster parenting for awhile, but it just didn’t fill the void like I’d hoped it would. It was a wonderful experience, but I discontinued after almost 2 years, even though it was rewarding. When my last two little girls were placed back in their home, I didn’t take another foster child. I eventually quit even going to the dr entirely, and didn’t take care of myself.

Over 3 yrs ago, my husband and I got back together. It isn’t the perfect story by a long shot, but it’s ours, and as the song goes, “God Bless the Broken Road”. I do, everyday. He’s worked through so many issues, and I’ve done a lot of work, too. We’re a good fit.

So….this time around, TTC for another 3 yrs. My best friend is pregnant. 2 yrs ago, I established medical care once more, mainly because I had a cycle that was lasting into the 3rd month, and I needed it stopped. I was started on Provera, and am able to cycle normally when I use it for a month or 2, but then it quits working. I then stop it for a few months, and then start it again. It just isn’t working well. I am also on Met and Spiro again. Ugh. Acanthosis nigricans is getting better, but not much else. No weight loss, I can report unhappily. I filled a prescription for Clomid, but it’s sitting in my drawer at home, because I can’t cycle to take it! Frustrating!!!

This disease is maddening, depressing, and utterly heartwrenching. I manage to keep a sense of humor at times, but other times, I feel so bogged down with it.

At 32, I have this overwhelming feeling that if something doesn’t happen in the baby dept, it’s going to be too late. So I’m really concentrating on it right now. I am starting (next week after Christmas) taking a few herbs, am going on a low carb diet, and implementing an excerice plan. Yay!!! We’ll see if this will do anything. I’ve lost up to 40 lbs in the past, with no results with infertility, but I’m gonna keep trying.

I hope this helped at least one person, but if not, I think it helped me. It’s long, but this is actually the condensed version. Hope you all have wonderful luck with controlling PCOS….don’t give up, buck up!!!

Want to connect with me? My name is SweetSassyfrassy on the SoulCysters Message Board.