PCOS stands for Polycystic Ovarian Syndrome. Which means PCOS sufferers have cysts on the ovaries. Except when they don't. Welcome to the fun! Side note: this post is not for the faint of heart or those who don't like TMI when it comes to female anatomy.
Let's go back to the beginning. PCOS is an incredibly common condition, with current statistics saying 1 in every 5 women (or biologically female people) affected. There are three main features to the condition and to be diagnosed you must present two of the three.
- Irregular periods
- Excess androgen
- Polycystic ovaries
That's what I mean when I say not everyone with PCOS actually even has the PCO bit. Irregular periods are things like: irregularity in the occurrence of the menstrual cycle, or no occurrence at all, as well as them being incredibly heavy or painful. Excess androgen is the excess of the "male" hormone, leading to excessive hair growth, typically on the face but often all over the body. The cysts on the ovaries are fluid-filled sacs up to 8mm in size which obstruct the release of an egg and therefore stop ovulation.
Symptoms often present themselves in the late teens/early 20s and the list of possible symptoms is extensive.
- Irregular/heavy/painful/no periods
- Excessive hair growth
- Difficulty falling pregnant/infertility
- Weight gain and difficulty in losing weight
- Thinning hair and hair loss on the head
- Oily skin
- Acne
- Fatigue
- Mood changes
- Pelvic pain
- Headaches
- Sleep problems
According to studies, 70% of those with PCOS report excessive hair growth and 80% have issues with their weight. I am one of both of those statistics. I also think my mental health is linked to my PCOS, I have noticed hair thinning on my head and oilier skin recently. I am often tired and sometimes struggle with sleeping. Woohoo.
Diagnosis is a fun process. For a lot of people, doctors ignore their pleas and claim it's just because they're overweight. Luckily, my doctor is a bloody gem and when I went to her saying 'I think I have this' she basically took me on face value and immediately began the process for an official diagnosis. I needed to have blood taken to check my hormone levels and was referred to a different clinic to have a physical exam. If you're lucky at this physical exam all you'll need is an abdominal ultrasound scan, where the doctor(?) (I'm not sure if she was a doctor, specialist might be better??) scans your ovaries and looks to see if there are any cysts on them. However, if you're unlucky like me, your right ovary will hide away from the scanner behind other internal organs and you will need to have the internal, transvaginal ultrasound scan. Yep. A probe up there. Now, this is TMI but when I had my internal scan I was both a virgin and hadn't used tampons because I just wasn't having periods often and when I did I just used pads. So yeah. First thing inserted was a bloody probe. ALL THE THUMBS UP. So that was in there for maybe like five minutes and it HURT. The insertion (lol) was fine but like, this woman was literally pushing stuff around inside of me and it was soooooore. Anyway, I can now confirm I have cysty ovaries :) My hormone levels I'm pretty sure came back normal-ish though. Can't remember.
Treatment for PCOS is hard. There is no cure. There are things that help; the standard 'weight loss, exercise and healthier lifestyle' can help decrease symptoms. There are also things that can be prescribed, such as Metformin (usually used in diabetic treatment), birth control and in more serious cases, ovarian drilling, where the cysts are removed permanently. I chose to go down the birth control route (because at that point I was sexually active yay for me) so it killed two birds with one stone, so to speak. I had the mirena coil (or the hormonal IUD) inserted this January and let me tell ya, that wasn't fun. So, I'd already had the probe shoved up there and wiggled around. But to have the coil put in a speculum was required, essentially prying and keeping open the vagina so the doctor could see what she was doing and placing the tiny Tesla logo inside my cervix. So that was up in me maybe about ten minutes? Just ensuring all was fine and it was placed properly and all that jazz. And it was fine and I am now not scared at all for a smear test because apparently that is seconds compared to that ordeal. It is birth control that lasts for FIVE WHOLE YEARS and just required checking on the strings every few months. Easy peasy.
So what the coil does is thin the lining of the uterus meaning fertilised eggs have nowhere to stick to and thus no baby growing can occur. This helps with periods because if they do occur they are so so light because there's not much left to shed. CRACKING. Now, for everyone it's different but when I had it inserted I then bled, maybe like spotting/light bleeding for a good four months. Every. Single. Day. Not fun. But at least it was consistent? It meant I couldn't give blood though because I'd lost so much iron because of the blood loss. That made me sad because giving blood is such an important thing to do and only 4% of those who are allowed and can, actually do. Don't get me started on the ban against men who've had anal sex. It's outrageous and SO MANY MEN could be giving blood but they just can't. UGH. Anyway.
Now that's most of the sciencey stuff out of the way, it's time to discuss the difficulties PCOS brings mentally. I am part of many Facebook groups for PCOS sufferers because I wanted help and advice and I found like, nothing in the media. That's a lie actually, Leena Norms has made some excellent content about PCOS and this link will take you to her video with Hannah Witton talking all about the condition, like a guide for dummies I guess. But I found no blog posts or personal stories or anything like that, really. Now I'm not going to lie, a lot of these groups are aimed at those who need solidarity over infertility issues which is something I don't need to worry about yet. No babies for a long time, eh, Si? There are heartbreaking posts every day from women who've suffered their 17th miscarriage or watching yet another of their friends announce a pregnancy or yet another home fertility test with a negative result. Or just women needing a different shoulder to cry on, a one that understands the condition and what it entails and how difficult it is. There's also a lot of stuff about diets and which diet to be on and stuff like that which I don't really agree with because a lot of it is like 'oh I don't eat carbs' and I just don't think it's okay to cut out an entire food group. However, I am not a person with a healthy diet (yet) so who am I to criticise. Anyway, it's crazy to me that the information isn't readily available really. 1 in 5. That's so many, guys.
So I wanted this post to be maybe something that appeared on page 17 of the google search for PCOS and offer a more personal perspective than what the NHS page gives. On top of having mental health issues and eyes that need glasses, I also have dodgy ovaries. But I'm okay and I deal with it and I survive and lots of other people do too. I hope this enlightened any of you who didn't know what it was before. Maybe this could even push someone to check their own symptoms. I know going to the doctor is scary but it's so much better knowing what's going on with your body and knowing what steps you can take to help it. When I move to Lanzarote (next week lol) I get to have much more of an outdoor lifestyle and will eat better because I'll live with my grandparents who look after me properly and hopefully that will help things more. We'll see.
Hasta la próxima mes petits filous
KB
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