"It took me ten years to get a diagnosis" living with PCOS

By Nikki Michelsen

Oct 7, 2022

"It took me ten years to get a diagnosis" living with PCOS
This month, we’re taking a deep dive into Endometriosis and PCOS. We’ll be answering all your burning Qs like ‘what actually is PCOS?’ and ‘what are the symptoms of Endometriosis?’ But there’s a twist – crossover episode alert! I’m gonna tell you all about PCOS right here, but to learn about living with Endometriosis, head on over to The Unedit now – who we’re collaborating with on a whole bloody series about all things period-related, so check out the rest of the series while you’re at it.
We’ve covered the basic symptoms of these conditions on Fem Space before. And we reckon that, while articles like this are bloody necessary for spreading awareness, they can’t convey what it’s actually like to live with these conditions. So I scoured the internet and spoke to friends, ohne babes, and The Unedit’s very own Terri Waters to get some insight into what these conditions are like for the people living with them.
Let’s start at the beginning. What is PCOS?
PCOS, or Polycystic Ovary Syndrome, is a condition that affects roughly one in every five women in the UK (although it is thought that many of these women will be living with it undiagnosed). As with Endometriosis, and as with, depressingly, many “female” conditions, diseases, and illnesses, PCOS is under-researched, difficult to diagnose, and has no known cure. (Anyone still playing my drinking game at home? Time to take a shot).
The three main characteristics of PCOS are that the ovaries do not regularly release eggs, resulting in irregular periods; excess levels of androgens, or male hormones, which often leads to excess facial or body hair; and polycystic ovaries, in which the ovaries become enlarged and contain many fluid-filled sacs (follicles) that surround the eggs. As stated by the NHS, “despite the name, you do not actually have cysts if you have PCOS.” These follicles are harmless in that they should not cause pain, can be up to 8mm in size, and are underdeveloped sacs in which eggs develop. These sacs often are then unable to release an egg, meaning that ovulation does not take place.
PCOS is related to abnormal hormonal levels in your body and, while there is no known cause, exactly, it is thought to be hereditary. Many women with PCOS are resistant to the action of insulin in their bodies, meaning that they must produce more insulin to overcome it. This results in the increased production and activity of hormones (like testosterone) and also promotes weight gain.
Am I supposed to know what my ovaries look like or are there easier-to-spot symptoms?
You’re definitely not supposed to know what your ovaries look like – the docs will figure that out after you present with symptoms. But more on that in a sec.
The main symptoms of PCOS are experiencing an irregular menstrual cycle or even getting no period at all; excessive hair growth; weight gain – especially if the weight gain occurs very suddenly with no apparent external cause and if the majority of the weight gain is around the upper body and stomach area; thinning hair and loss of hair from the head; oily skin or acne.
Terri Waters, the founder of The Unedit, lives with PCOS. She says she first noticed something was wrong when she was thirteen – “I got my first period aged thirteen. Being taught that women got their period once a month, it puzzled me that my next one didn’t arrive until a year later. My doctor and my mum blamed it on my age, and I was told that my hormones were just settling down.” She didn’t get a PCOS diagnosis until a decade later. She reports painful, highly infrequent, irregular periods, and symptoms which she initially just put down to puberty; “relentless cramps, sharp pains, and oily hair and skin.”
Renée, an ohne ambassador, is 18 and currently in the process of getting diagnosed with PCOS. While two gynaecologists have told her she does have PCOS, a GP has told her she doesn’t, so she’s still waiting on an official confirmation. “I use the Flo app, which noticed my irregular cycle and alerted me I was showing familiar symptoms of PCOS.” The symptoms Renée had logged that the app picked up on are that she rarely has a period, experiences hair loss, bloating, a sharp pain in her pelvis, bleeding in between periods, insomnia, constant fatigue, and headaches.
Getting diagnosed
Time to state the obvious: if you suspect that you may have PCOS, speak to a GP. There’s only so much help the internet can give you and, if you hunt long enough, you’ll probably have diagnosed yourself with a handful of rare diseases and at least four different types of cancer by the time the hour’s up. I really can’t stress this enough: speak to your GP.
Terri was diagnosed when she was about 24. For years, and with the help of the combined pill, she’d experienced pretty regular, six day-long, heavy periods, but suddenly they changed to periods that lasted no more than 48 hours and were barely there they were so light. “A referral to my gynaecologist for abnormal periods and an unusual response to a smear test saw me taken off of the pill for three months to allow my hormones to regulate for accurate test results. That was where the fun started – more weight gain, cystic acne (which I had never experienced before, even as a teen), visibly oily skin and hair, the most horrendous mood swings – and once I ‘missed’ my first period, long-term PMS that wouldn’t shift, presumably until my period eventually arrived.” Blood tests for hormone levels came back normal, but an internal ultrasound revealed ovaries so polycystic that “even the radiologist was surprised”. She was diagnosed with both PCOS and hyperthyroidism – “I learnt that the two are often intrinsically linked” – as a result.
Highly irregular periods are one of the earliest signs someone might experience to indicate that they might have PCOS. This was certainly the case for Samantha Baines, a writer and comedian (who also happens to be another ohne ambassador), who was first diagnosed at age 16. “My symptoms were that I had a period for nearly 10 weeks!” She sought advice from her doctor and was diagnosed with PCOS after undergoing various scans and tests.
In which doctors prescribe the pill for everything, a thread…
Ah, the pill. Once thought to be a portkey to women’s liberation when it was approved in the 1960s, now a staple of many women’s bathroom cabinets, the pill is still somewhat controversial and its side effects still largely under-researched. The combined oral contraceptive pill is often prescribed by doctors to treat a number of conditions that have nothing to do with the reproductive choices of the patient. From taking it to treat teenage acne to taking it to regulate (undiagnosed) irregular periods, most women I know are taking or have taken the pill at some point in their lives on the recommendation of their doctors.
Both Terri and Sam have been prescribed the pill for managing their PCOS symptoms. Terri has mixed feelings about whether the pill has helped her. “It’s been 18 months since I was put back on the pill and, whilst my periods do arrive monthly, they’ve become unpredictable, both in terms of duration and flow and with regard to the various symptoms that crop up beforehand.”
Aside from her period, the pill has helped regulate some of Terri’s other PCOS symptoms “rearing their ugly head too much” but she’s likely to be taken off it soon due to issues with her thyroid. “I’ll be left to fight the symptoms without any hormonal help at all.”
Sam’s choice to turn away from the pill speaks to a prevalent but overlooked problem that many women have with the pill. “I was initially put on the pill which I was on for ten years to regulate my period and combat other symptoms like skin breakouts et cetera.” But she came off the pill because she was concerned about the effect it was having on her; “I was worried about what those hormones were doing to my mental health.”
Her periods regulated about a year after she came off the pill. “Although I do have painful periods [I’ve] learnt to just give myself a break and do as little as I can for those first few days.” To manage the pain she says she drinks a lot of water and uses hot compresses and CBD oil.
Managing symptoms without hormonal contraceptives
I think I’ve established by now that there’s no cure for PCOS, but it can be treated and its symptoms managed.
Once diagnosed with PCOS, a common treatment suggestion is that if you are overweight you should try to lose weight. Now, I want to caveat this by saying that I’m fully aware that the medical profession is riddled with fatphobia and that many plus sized women will be dismissed by doctors, no matter the symptoms they present, purely by virtue of being overweight. This is a systemic, insidious problem and my heart goes out to anyone who didn’t get the treatment they deserve because of their weight or perceived size.
However, the hormonal imbalances that cause PCOS don’t only affect the reproductive hormones (oestrogen, testosterone, progesterone) but insulin too. Put simply, insulin regulates the amount of glucose in the blood. The imbalance in insulin production in people with PCOS contributes to weight gain (insulin is a growth hormone) and can contribute to increased cravings, low blood sugar, and make it significantly more difficult for a person with PCOS to lose weight than for someone without PCOS. If left unchecked, it can also lead to Type 2 Diabetes.
Weight loss can also help regulate your menstrual cycle. Sam says she has trouble losing weight but “I’ve learnt to love my jiggly bits and try to stay healthy.” Trying to maintain a healthy, balanced diet and exercise regularly can help manage symptoms of PCOS.
“I also have skin breakouts so I have worked on a skincare regime that works for me over the years,” Sam says. “I have a lot of hair loss but as I have a lot of hair this just means de-clogging plugholes in my shower rather than any aesthetic [problems].” It is also possible to take medication to treat excessive hair growth, irregular periods, and fertility problems.
With treatment, most people who live with PCOS are still able to conceive if they wish to have biological children. If the initial medications prescribed to treat fertility problems prove ineffective, a procedure called Laparoscopic Ovarian Drilling (LOD) is available. Yes, the word ‘drilling’ is certifiably terrifying, but it’s apparently a pretty simple procedure using heat or a laser to destroy the tissue in the ovaries which is producing the androgens.
PCOS in a nutshell
PCOS is a problem affecting a whopping one in five women. I hope that in the not-so-distant future more money will be poured into researching this condition – and others like it, such as Endometriosis – so that less women have to suffer.
If you do suspect you have PCOS, don’t panic. Go to your GP, present your symptoms, and insist that they send you for scans if you think you need them. Fortunately, there are a number of ways to treat and manage PCOS and we’re now living in a world where women are starting to open up about their bodies, periods, and pain. It’s never been easier to find other people going through the same thing as you, so don’t forget to reach out to people in your social circles and find communities that can support you through both your diagnosis and as you learn to manage your symptoms. “My PCOS took 10 years to be finally diagnosed,” Terri says. “And whilst I know it’s something that’s not going to go away, I can at least now make peace with it.”
Ohne Team
Image credit Ron Lach from Pexels