On facebook in December 2013, there were many pregnancy stories going around. “5 pregnancy facts about me” or “20 pregnancy facts about me”, etc. Most of them started with morning sickness, or the happy lack thereof, and ended with 12 hours of labor, or a C-Section, or some other happy ending. Mine is much, much different. I compiled 20 at the time…but more will be added to that list, since my pregnancy facts – or infertility facts, as the case may be – are still accruing. I’ll be doing one “fact” per post, in a recurring fashion. The roundup of this entire series is here: Roundup
1) I have had PCOS since right out of college, or maybe forever, but since I wasn’t trying to get pregnant and I didn’t want to get on the pill, no doctor would help me. At least 5 refused to try any other option besides the pill, so I was not able to do anything about it until right before we got married.
I have PCOS which has myriad side effects. Mine include weight gain which contributes to hormonal imbalances, hormonal imbalances which contribute to weight gain, infertility, excessive male-pattern hair growth, sometimes pain while ovulating, sometimes no signs of ovulation, along with other symptoms.
In high school, I was very athletic, a 3 sport athlete, and I think I had an over-abundance of adrenaline. I was intense. Like, INTENSE. Playing defense in basketball, I would simply overwhelm opponents with a flurry of hands and arms to steal the ball and I could just go go go. I was also very strong, which working on my parent’s farm and shingling houses in the summer with my family made me “cut”. People on other teams accused me of being on speed and steroids, and were serious. One girl who moved in to our town when I was a Junior asked, in all honesty, if I was an American Gladiator. Of course, she wasn’t that bright, but still… I honestly think that the hormonal problems started then, with extra adrenaline and extra testosterone. I also had very bad acne in high school, another side effect, and I took antibiotics every day for about 4 years straight, used Retin-A the entire time, and fought and fought and fought it.
But I didn’t get the weight gain most women get, probably because I was so active. This continued through college, where I was a two sport athlete, basketball and track. 3 hour practices in basketball and being a middle distance runner where you have to train both long distances and sprints don’t allow for much weight gain, and I really didn’t have to look after my eating all that much to stay in shape.
After college, I went to grad school to study theoretical algebra. That was intense, and involved me sitting on my butt staring at incomprehensible signs and numbers with my forehead on my hands until they could be logically comprehended, and beer drinking on the weekend. Lots of beer drinking. 2 years of that, and I graduated with my M.S. and a healthy appreciation of dark craft beers. Thus I was on the road to bad habits and health.
After I got my first job, I remember distinctly having intense pain when ovulating, but I didn’t know what it was. It was a sharp, intense pain in my lower abdomen that seemed to go away when I pressed on it with my hand. My right ovary seemed to have it worse than my left. I specifically remember (this was 13 years ago, so some of this is in long term memory storage, which can be fuzzy) two instances. Once, the pain was so bad, I went to the emergency room. They couldn’t find anything wrong with me after a colonoscopy, but never even thought to look at my ovary. I didn’t either, but then again, I wasn’t a doctor. The pain eventually went away, and I was released, and thought nothing of it after that. Another time, I was at home visiting my family and it started to hurt. I stood up from the couch with a grimace, and pressed hard on my ovary area, and I looked up and saw my Dad’s face. He had caught my grimace of pain, saw where I was pushing, and unconsciously pushed in the same spot on himself. I think he was trying to figure out if it was appendicitis or something, but he actually never said anything to me. I am guessing that each time, this was a cyst popping.
Another sign things were wrong were long, unpredictable periods. I never knew when they would start again. They were long, 35-45 days apart, but never consistently. I didn’t know how to track when they were coming so they were always a surprise.
During the time I was working at my first job, before I met my husband, I went in for my yearly well woman exam annually. The doctor would see the excessive hair growth, I would show confusion on when the first day of my last period was, they would see weight gain, and they would try to prescribe me the pill. I didn’t want to take the pill. I had moral and religious objections to it, I wouldn’t remember to take it every day, and it seemed like a bandaid to something that was wrong. Taking the pill when you have PCOS may stop some symptoms, but it does not cure anything. It is hiding a disease but isn’t curing a disease.
Because I wasn’t actively trying to get pregnant, and because I didn’t want to take the pill, the medical establishment just ignored me. When I said “no” to the pill, they stopped trying to help, shook their head and wrote me off.
I went through at least 5 doctors in the 5 years I was at my first job. Not one tried anything other than shove the pill at me.
I was active during those 5 years at my first job. I played volleyball most of the year 3 times a week, biked during spring, summer, and fall, once doing a 100k (63 miles) in one day, and ran…sometimes. Not often. I wasn’t eating well, most of the time bar food and dark beer, but I was active. I shudder to think how much time and money I wasted, and how much damage I did to my fertility in this 5 year stretch. I also had a bad breakup during this time, and instantly gained weight. That really started the bad feedback loop of weight gain and hormonal problems.
After I met my husband and moved to my second job, I started thinking heavily about having children. We wanted to have a family, and when I told him about all my problems, he was supportive in trying to find a doctor that would help. I found a doctor in Wichita that didn’t scoff when I said I didn’t want to take the pill. She put me on Metformin for the first time, and did an ultrasound to confirm PCOS. The first time ever! I was 29 at the time. Already past prime fertility for “normal” people, let alone someone with PCOS.
At this point, after about a year, I decided to go snow skiing. My then-boyfriend-now-husband didn’t want to go with me, so I took my brother. It was a company sponsored bus, and 3 days of skiing in Colorado. On the second day, I tried to avoid some snowboarders, got into some ice, and cartwheeled down the mountain. The back of my ski hit the mountain and just destroyed my knee. Ok, it wasn’t destroyed, but it did tear my ACL, MCL, and meniscus. Oh, that was awful. Pain, pain pain. I have a high pain tolerance, and I wasn’t screaming, but I was holding it in. The ski patrol had to take me down the mountain (head first on my back. That was awful) and to the medical shack. They didn’t believe that I was severely hurt, but my brother could tell. They finally took my blood pressure and it was ski high. They finally believed that maybe there was a problem. We had to wait for the bus to go back to the hotel, and then wait for an ambulance to come get me to take me to the ER. They kind of patched me up, gave me a prescription for pain medicine, and let me go. No pharmacies were open, so I had to wait overnight to get anything other than OTC. I then promptly took 2 on an empty stomach, and started throwing up. All the way back to Kansas. My poor bus mates.
I had to wait a month for the swelling to go down before I could have the surgery. I then had the surgery, and did the 6 weeks of rehab, but it never was strong again. It always hurt. Always. Two years later, it still always hurt. I went to a chiropractor for something else, and he adjusted something…and the pain went away. The first time in 2 years, it didn’t hurt when walking out of that office. Of course, that wasn’t permanent, but at the time it was hopeful. I still have problems with it hurting, and it has affected me and my activity level ever since.
So, bad eating habits, now restricted movement, and a weight-gain/hormonal-imbalance feedback loop. I gained a lot of weight, and my cycle was more and more erratic. I gained weight before the wedding, I didn’t lose it. Stress has an influence on your hormones, and wacky hormones like mine react to it badly.
When talking to the priest before we were married, he interviewed each of us individually to get a feel for if there was any undue influence, or any reason that we shouldn’t get married. I remember that the priest asked if there was any reason I could not or didn’t want to have kids. I said yes, I had PCOS, it was possible I was infertile but we didn’t know, and that my fiance knew all about it. Father was concerned, I could tell, because infertility is very hard on a marriage. Very hard. He was happy with my explanation and that I was open with it with my fiance, though. I think some women would try to hide that from their fiance’s, and that is a terrible thing to go into a marriage with…a secret that intense.
We did get married, and I kept my job in Wichita. My husband farms, so he couldn’t move with me. So my commute was 3 hours one way. I worked it out with my boss to work 10 hour days M-Th, getting in a 9:00 on Monday so I didn’t have to leave so early. I had an apartment for awhile and then moved in to a co-worker’s extra bedroom for a while. I did that for our first year of marriage. It sucked. No other way to say it. Suck suck suck. Finally, the blessed day came when I was layed off. Yes, a day for rejoicing. After a year of living away from my husband most of the week, I could finally just be with him. I was layed off in February and got pregnant in April. I was 31.