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More on KentOnline
Can you imagine being prescribed the wrong medication, or not being taken seriously by your GP?
From being rushed out of GPs' doors to being left to Google their conditions Megan Carr spoke to several women across Kent living with Polycystic Ovary Syndrome (PCOS).
Sidonie Ewen speaking about Polycystic Ovary Syndrome
Sidonie Ewen, from Dartford, was diagnosed with the condition at 18 after an ultrasound for irregular periods and has been living with the condition for five years.
The retail worker said: "I was put on the pill by my doctor and told that there was a high chance I would not be able to have children. I felt sad, heartbroken and very uncertain about my future because I'd always wanted kids.
"It was very unsettling to know that I couldn't have them. No further advice or information about the condition or support was offered to me."
PCOS is a common condition affecting one in 10 women.
The three main symptoms are:
The 23-year-old continued: "Over the years my weight increased despite my efforts.
"I tried Weight Watchers, Slimming World, calorie counting and different types of diets, I couldn't find a single thing that would work for me in the long run, and any improvements I did see were very minor, compared to what I was seeing everyone else achieving.
"It was very disheartening. My hair also started to fall out and I was getting additional hair on my face and across my chest.
"That really affected my confidence and it made me feel very unwomanly, just embarrassed and almost ashamed of myself.
"So it was very hard for me to have a relationship or anything during that time just because of how unpretty I felt as strange as it sounds.
"I didn't think there was anything I could do about it other than just try and manage the symptoms as best I can on my own, using tweezers or just shaving the hair on my face."
More than half of women with PCOS do not have any symptoms.
Symptoms in others can start to show during late teens or early 20s.
Sidonie learnt about alternative treatments after her nan watched a documentary.
She'd felt "brushed off" by her GP, adding: "They'd treated it like it was a very unimportant thing to them. So I was very scared to go back.
"So my grandparents actually offered to pay to let me see a specialist, Dr Miell, who I saw at The Blackheath Hopsital.
"He did another ultrasound and a hormone blood test and told me I had the physical symptoms of PCOS but my hormones were not far from what they should be.
"So I shouldn't actually have problems having children, which was the greatest relief to me.
"He also recommended I be put on Metformin and Yasmin to help me combat my symptoms."
Dr Miell advised asking her GP for a prescription.
While she got the contraceptive pill Yasmin on the NHS she was only able to get a four-week supply of the costly Metformin.
She said: "Every four weeks, 13 times a year, I'd be paying 10 pound. I couldn't afford that. I'd recently been made redundant and it was very hard.
"I had to keep going back to my GP and saying I can't afford to keep paying for this medication, was there any way that they could increase my prescription."
Eventually she was able to secure a four-month prescription.
She added: "At the minute, my symptoms have greatly improved, my hair is growing back and I'm finally starting to lose weight.
"I'm more confident in myself, the hair on my face and chest is not an issue anymore. It is a great confidence boost.
"My periods are now regular because I'm on the right pill and I have a lot more hope for the future.
"However, I am concerned, going forward I'm going to have to see a specialist, for example, when I'm looking at having children, because I can't be on the Yasmin pill for that.
"I asked the doctors if I could go through the NHS when that time comes and they said 'we will only tell you if you've got PCOS and then pretty much it's just a case of you having to get on with it', which to me is ridiculous.
"We pay our taxes. It's a condition. It's a known condition. It's quite a common one even, but the fact that the help is out there, but the NHS just can't give it or won't give it it's really frustrating.
"So I'm going to have to look at saving up to try and see a specialist for wanting to have kids.
"But if anyone out there wants some advice I'd say don't give up. There is help out there.
"You just have to keep pushing for it. And no matter how bad it seems there is something they can do.
"We shouldn't have to keep fighting but at the minute that's the way things are so good luck to you."
The cause of PCOS is unknown, but it can run in families.
It is linked to unusual hormone levels in the body, including high amounts of insulin, a hormone that controls sugar levels.
Just like Sidonie, Paris Valentine was diagnosed with PCOS in her teens, at just 16.
Now 17, the Gravesend school pupil said: "The initial diagnosis wasn't a shock as I had my suspicions.
"I hadn't had my period for five months prior to my diagnoses in September 2020, however, when I did have a period I would be in so much pain from cramps."
After a blood test and an ultrasound Paris finally went to the doctors in person for her diagnoses. They prescribed the contraceptive pill to help regulate her hormones.
She said after up until June 2021 she was on Levest but due to mental health problems was prescribed Femodette.
Since Paris' diagnosis she hasn't been called in for a blood pressure check.
She should have a medication review every three months but due to Covid-19 this has been over the phone.
Paris said: "For all I know I may be developing blood clots or my blood pressure may be too low or high.
"PCOS is awful. The contraceptive pill I'm on isn't a full contraceptive either as it helps regulate the menstrual cycle.
"So I have the added fear that even with the extra precaution of using condoms with my partner I am still am at risk of getting pregnant.
"Then in contrast there's the fear I won't. With PCOS there's not enough research into the infertility it can cause and so that's also at the back of my mind."
Paris continued: "My periods are still extremely heavy and very painful but I guess I'm going to just have to live with that just like I do with PCOS.
"Thankfully I have my boyfriend's support when I do experience pain. And I have people who I can talk to."
Throughout her diagnosis, Paris explained that her health care professional was a very sweet lady that made good conversation with her.
However, on one of her first medication reviews over the phone Paris felt very uncomfortable.
She said: "The male doctor was very judging.
"When he asked for my weight and I said I didn't know it he laughed at me and said everyone knows their weight.
"He then continued to mumble something under his breath. I felt very uncomfortable and it's really affected my trust with the doctor."
Paris isn't the only young lady to experience problems with her GP.
One woman from Gravesend, who did not wish to be named, also found her diagnose difficult.
The 20-year-old said she'd had issues with her period since she was 14 but didn't find out it was PCOS until 2019.
She said: "I remember being so embarrassed about almost never having them because nobody else I knew had this problem.
"I’d get sharp stabbing pains pretty often, even when I didn’t have a period but it was just put down to growing pains.
"As I got a bit older, the pain definitely got worse and more frequent. I started to struggle with painful, sometimes cystic acne, which was something I’d never had before.
"I also had a lot of thick and dark body hair and shaving it seemed almost useless as it would be back within a day or two.
"When I was about 17, I went to my GP about my irregular periods and he told me it was normal for them to be irregular at first, however this had been going on for years and it didn’t feel right to me.
"He gave me a prescription for the contraceptive pill and said that this would sort out my problems.
"It didn’t do anything. I was prescribed a few different types but none of them brought any joy.
"I just kept being told that some people have irregular periods and the pain that I was getting all the time was just cramps.
"I started working at 17 and would often have to leave or call in sick because of the pain I was feeling and often the pain was so bad it caused me to be sick.
"After about a million appointments with my GP, the possibility of PCOS was brought up, which was something I’d never heard of at the time."
After an unsuccessful ultrasound she had to undergo an invasive hysteroscopy.
"It wasn’t explained to me what this was, what they would do. It was really a horrible experience," she said, adding: "They found my left ovary almost immediately, but couldn’t find my right one. I could see them panicking a bit and of course that worried me.
"They were almost at the point of giving up but when they did manage to find it, it was completely hidden.
"They shut the curtains around me and stood just outside them so I could get dressed again, however I could still hear them talking about how abnormal the scan was and it terrified me.
"The lady didn’t explain anything to me. She gave me a piece of paper and told me to take it to reception and said the lady there could explain some more.
"When I gave her the paper, she just said I wouldn’t understand it because it’s a lot of medical terms.
"I was really angry because I was there to find out what was wrong with me and nobody seemed to want to explain."
Eventually she was told she'd need blood tests and only after reading the medical notes found out she had PCOS.
Her blood test results were delayed and eventually she was told she'd need more tests after her sample got lost.
When a GP eventually gave her the diagnoses she says she was given no direction
She said: "He told me that I probably wouldn’t be able to have children, IVF might be an option if I decided I want to but even so it may not work.
"I’d never really wanted children, but the way he made it sound as if I may not have a choice really broke my heart.
"I didn’t find out until much later that it was more like I may find it hard to have children, not that I was probably unable.
"He didn’t explain to me what exactly PCOS was and seemed in a rush to get me out.
"I was told that it was the reason for my acne and there may not be much could be done about that.
"I was visibly upset when he spoke to me, but he really seemed as if he couldn’t care less.
"I was left to my own devices after speaking to him. I had to spend hours searching Google for what PCOS really meant, things to do about it, etc.
"I found out through Google what the 'cysts' really are, that laser treatment is an option and ways to combat my symptoms.
"I felt so hopeless with my doctors and I felt really lost and alone; the people that were meant to support me and help me understand what was going on just didn’t seem to want to help at all."
NHS Kent and Medway Clinical Commissioning Group have been contacted for comment.
To find out more about PCOS click here.
