Taking Things Into My Own Hands

Dear PCOS,

You made me feel really unsexy and not womanly enough. But you pushed me to learn more about my lady bits. You showed me the flaws in the sex ed I was given at school and made me confidently seek the knowledge about my body that tradition, society and my government failed to deliver. I can openly talk about smegma, vaginismus and period blood to anyone willing to listen (male or female). So you may have given me horrible PMS, but I guess we can overlook that for now ;)

Amina, South Africa

Kinda Crappy

Dear the pill,

we have a love and hate relationship. you keep my cycle in check, because without you my pcos can cause me to go 6 months without a period. But, you make my cramps worse and have made my life kinda crappy.
sincerely,

Anonymous, USA

Go Die in a Ditch, PCOS

Dear Polycystic Ovarian Syndrome,

I truly wish you would die in a ditch. You're the reason why I feel so disgusted with myself . I have had it with you ruining my face and screwing my self image, I hide the bottom of my face and cry when I see all the scars on my face. I hate that because of you I am in debt $5K because at the age of 17 the hair had gotten so unbearable , I decided to get laser removal treatment, in a low income family. It was excruciatingly painful and I would cry so hard every session. In high school other people decided to point out and make fun of that, I started getting bullied. It’s been some time out of high school but you still haunt me. Regardless of what I would do to tame you, you never go away. I shave everyday, and my face hurts because of it. It hurts so much that I let it grow, and I mourn more. Shaving days have turned into deep conditioning, making sure I take care of my skin , but if you weren’t there how much more happier I'd be.

I fucking hate you.

Leanessa, USA

Diagnosis Party!

Dear period,

Here we are. About 9 years after my first period. It has been a wild ride so far. Over the past years we have dealt with so many irregular periods, horrible cramps, pregnancy scares and so much more. I have always felt that there was something a bit off about you. I never knew what and I was never encouraged to figure it out. Never. I was actually advised against figuring out what was actually wrong. I felt helpless, scared, frustrated and so much more. Until I was done with all of that and decided that I needed to know what was wrong. We have dealt with 3 types of different birth control pills, broken condoms, an implant, coitus interruptus, fertility awareness methods to finally come to the hormonal coil. Because the other methods weren't especially helpful with regulating you and giving me the security I needed to feel safe, I came down to the decision to get a hormonal coil. Not using any other birth control except condoms was not an option because my partner didn't feel safe enough. So I came down to a coil. But not after I went to multiple doctors to insist a examination about PCOS. I had read so much about this hormonal disorder that I was certain that this was it. And it was. Finally after all those years of not knowing what was happening, I finally do. And it brings me so much joy that I don't have to question my period every time it happens.

Love Sophie

Sophie, Netherlands

Managing PCOS

Dear (possible) PCOS,

You suck!
The weight gain and the inability to lose weight sucks. The excess hair that has made me self conscious since I was young sucks. The intense period pain sucks.

Luckily, finding a diet that works in lockdown by reducing the sugar I eat and exercise has meant that I've managed to lose a stone so far and I'm no longer classed as obese! Now to finding a method of coping with the rest!

Thank you to my hormonal coil for helping with this so far. Gone from having around a 60 day cycle on the implant to a 30 day one on the coil! Big up the coil!!

Here's to the future and managing the rest!

Cait

Caitlin, UK

Part of Me

Dear PCOS,

Sometimes you make my life miserable. You’ve made me think about my body and my future in a very different way. From the hairs on my chin to the pain in my back. I can always see you. But in a way I am grateful you are part of me. Without you I wouldn’t be so open about myself. I have been able to connect with so many women on an emotional level and form such a supportive community. Although sometimes guys have been put off by you, that has actually helped me. It’s made me realise that some of them weren’t worth it. And now we’ve found someone who accepts us both, whatever that may mean. All in all, you’re a pain the the arse (actually... lower abdomen really) but you are part of me and that’s fine.

Freja, UK

Give Me a P, Give Me a C, Give Me an O

Dear Uterus,

I want you to know that I am sorry for fighting you and never trusting that you know what you are doing.

I had to try for so long to get your polycystic ovaries diagnosed, thinking you had endometriosis.

I want you to know that I'm not frustrated with you, even when my period comes later on in your preferred window of 34 to 60 days. I don't like my hairy chin or arms, but now I know that we have PCO (without the S), we can both be at peace with it.

I'll try harder to be calmer, for both of us, and I'm always in your corner.

I love you uterus.

Anonymous, UK

It’s Not Normal!

Dear all the GPs that brushed me off.

Fuck you.

In my senior year of school, I had 6 months of constant bleeding, falling asleep in class and so much money wasted on pads. According to my doctor, it was perfectly normal for someone my age (17) to have irregular periods.......but this ain't irregular, this is too regular....

Same thing happened the next year, another 6 months of blood and lethargy. Went to another doctor, same explanation of them and a script for the contraceptive pill. I never took that because the period stopped in the week after that particular visit.

This went on for a few years, and I gave up on doctors in my town and didn't consult another doctor until I was 20 and had moved to a city with more options.

New doctor said that having a period for that long isn't normal (duh) and she sent me off for bloods and a ultrasound. After that, she diagnosed me with PCOS and anemia due to all the blood I was losing. She went ahead and prescribed me the combination pill and Metformin (which is the automatic prescription for PCOS, but it really shouldn't be).

Went well for about a year on those meds, until I ended up in the hospital with a Pulmonary Embolism (blood clots in the lungs). Turns out the combined pill can cause blood clots, good to know! (I also have a Protein C deficiency which contributed to the clotting, didn't know this prior to the hospitalisation) Took me about a year to feel like I can breathe freely, but I still have constricted breathing sometimes and will have to take blood thinners for the rest of my life.

Now I'm on the implant to manage my PCOS, because going back to constant bleeding is the alternative. Don't know if I'm going to stick with that long term, but choices are limited when estrogen is ruled out.

If you made it this far, congratulations! Just please get your doctor to test your clotting susceptibility before taking estrogen!! It takes a blood test and may save your life.

Dana, Australia