I have PCOS but it's not ruined my life

I have been blessed in so many ways, but my health isn't one of them. I have Ehlers Danlos Syndrome, because of which I've been a wheelchair user for the last couple of years, I have life threatening allergies, and I have PCOS.
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Fem Korsten
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I have been blessed in so many ways, but my health isn't one of them. I have Ehlers Danlos Syndrome, because of which I've been a wheelchair user for the last couple of years, I have life threatening allergies, and I have PCOS.

These-hairy-nails-are-no-sign-of-PCOS-luckily

These hairy nails are no sign of PCOS luckily

I was eight years old when my breasts started to develop, around the same time my acne came up. When I was nine, I first visited a dermatologist, together with my mother. He suspected a hormonal anomaly, and suggested I'd take the pill, as soon as I would get my period. My mother said she already had the intention to do that, as everybody on her side of the family had horrible periods, and she wasn't going to let me go through that.

By the time I was eleven, I felt disconnected with my body and hated becoming a women. I had been catcalled since I was nine by what I thought were old men, but in retrospect probably just were high school boys, who couldn't see that I wasn't sixteen, nobody could. I didn't look anything like my peers, with my boobs, my butt, pubic and armpit hair, and although I always was bullied in primary school, my early development gave the other kids extra ammunition and my raging hormones made it harder for me to deal with it. When, on a hot day, I went to school in a summer dress, my teacher made fun of my hairy legs, and told me I needed to shave. And, like clockwork, every four weeks I was sick.

I-have-furry-legs-but-doesnt-everybody

I also have furry legs but doesn't everybody?

I got my first period when I was twelve, and couldn't believe that that was what it was. My mother had started sex ed when I was nine, so I knew all about periods, or so I thought, and I was taught the actual blood loss would be minimal. This was not minimal. My mother comforted me, saying that the first period usually is the lightest or the heaviest ever. It turned out to be the lightest.

My period was very irregular from the start. Sometimes I didn't bleed for months, then I would not stop bleeding for months, most days the bleeding would be so heavy I couldn't make it out of the bathroom. One day I lost so much of the uterine lining that I actually thought my intestines had fallen out.

Hairy-toes-every-girl-has-to-have-them

Hairy toes - every girl has to have them

When I was thirteen, my GP agreed to put me on the pill, but he took me off again when I was fourteen and developed stretchmarks all over my legs, including my lower legs (totally unrelated we know now, but at the time, we had no idea what was causing them, so stopping taking hormones seemed logical). I never had a natural period again.

After a couple of months of not menstruating, my hair started to fall out, and I started getting morning sickness. That's when my GP referred my to a gynaecologist.

The gynaecologist took one look at my face, saw the acne and the hirsutism, and with the referral letter that spoke of heavy and irregular periods, he immediately suspected I had PCOS. After an ultrasound and blood and urine test, the diagnosis was confirmed.

And-of-course-I-have-hairy-nipples-don%2527t-worry-under-my-clothes-they-are-much-more-even

And of course I have hairy nipples (don't worry under these clothes they are much more even...)

I was informed that because of the PCOS my eggs would start to develop, but I would hardly ever ovulate, making it more difficult for me to conceive. That was treatable, but treatment works better in younger women, so I was advised not to wait too long if I ever wanted to have children. Also, because I didn't menstruate, but did build up uterine lining, I was more prone to endometrial cancer; in order to prevent that I had to make sure I would get four bleedings a year, either by a 10 day hormone treatment to induce menstruation, or by taking the pill.

I have been pill shopping for a couple of years, to find out what works best for my body, and I love my current one. It's the first to do anything for my acne, it has given me bigger boobs, and for the first time in my life, I have periods that are manageable by normal sanitary products. I can even leave the house during a stop week.

I-also-have-a-beard-and-a-moustache

I also have a beard and a moustache

It has really taken me some time to grow into my own skin. My body started puberty at eight, but it was in the first year of university that the age I looked finally coincided with the aged I felt I was. I can honestly say that I now love my body and like being a woman. I have even come to appreciate some aspects of PCOS.

I don't think I will ever appreciate how hairy I am without grooming, and I'm still on acne treatment, because I would like to have a relatively normal skin some day, but having PCOS also has its benefits. With my current pill there is minimal build up of uterine lining, so I'm down to two menstruations a year. As my EDS reacts heavily to the hormonal changes I go through in a stop week, this is very convenient, and saves me a lot of pain. Also, menstruation is no fun anyway, so having just two a year is much better than having 13.

My-pussy-looks-just-like-this-except-not-grey-and-with-less-eyes

My pussy looks just like this except not grey and with less eyes

Having known I might never get pregnant if I didn't start in time, made it easier for me to decide not to get pregnant ever, when I was diagnosed with Ehlers Danlos Syndrome. EDS is hereditary, so there is a 50% chance that a child of mine would have it as well, and apart from that, the pregnancy hormones will make EDS worse, so that any pregnancy would be a high risk pregnancy. I might have decided not to get pregnant even without PCOS, but because I have it, it didn't feel as a loss of options. I had already lost that option when I was sixteen and couldn't care less, and had long dealt with it.

It's PCOS awareness month now, and I hope nobody who reads this recognizes any of my symptoms, but that is very unlikely. It is estimated that 10% of women have PCOS, and it is the leading cause of infertility. Most women do not get diagnosed until they have problems conceiving, but as fertility treatments work better in younger women, getting the diagnosis in your thirties, might mean you will not be able to get pregnant.

So please, if my story sounds familiar, go check it out.

Find out more about PCOS at verity-pcos.org.uk