Stress Binge

Women diagnosed with PCOS told they can only access medication if they’re ‘trying for a

[ad_1]

Women living with polycystic ovary syndrome (PCOS) are being told by doctors they can only access medication if they are trying for a baby and some are waiting more than a decade for a diagnosis, i can reveal.

Three women who have all been diagnosed with PCOS, the most common hormonal condition in the UK, told i they have struggled to find the support they need.

These women say they have been hindered by out of date diagnostic criteria and that GPs are often not equipped with the correct information about the condition prompting them to turn to blogs and social media posts by fellow sufferers to find out how to manage their symptoms.

PCOS, a hormonal disorder, is most commonly identified as the leading cause of infertility in women but it can also cause an array of unpleasant and life-changing symptoms including acne, anxiety and depression, excessive facial hair, sleep apnea and chronic fatigue.

Dr Nitu Bajekal, a Consultant Gynaecologist and PCOS specialist for the Royal Free London NHS Foundation Trust, said the condition is “about so much more than fertility”.

“Anxiety, depression, binge eating disorders, androgen excess symptoms of acne, excess hair growth, hair loss, irregular periods, sleep disturbances, insulin resistance and excess weight gain are real concerns for people with PCOS and often don’t get the attention they deserve,” she told i

Up to 50 per cent of those suffering with PCOS may be left undiagnosed due to challenges in getting a diagnosis and a lack of information about the condition, experts believe.

Patients can often only access medication if they are trying for a baby and are instead told to manage their symptoms using the contraceptive pill or with lifestyle changes, which can involve a lot of trial and error.

Amerley Ollennu, 37, a black patient with PCOS, said she was wrongly told by her doctor that her excess facial hair was down to her race and waited 15 years before she was diagnosed.

Ms Ollennu, a lifestyle and beauty editor, was tested for PCOS as she was dealing with typical symptoms associated with the condition, like chronic fatigue and creeping weight gain, and had high cortisol and testosterone levels.

But because she only fulfilled one out of three of the diagnostic criteria used by the NHS, PCOS was ruled out.

“I had a scan, and because I didn’t have any cysts, my GP was sceptical it was PCOS. Not everyone with the condition has them,” the lifestyle and beauty editor told i.

“In my job, I speak to a lot of health experts, and I grew convinced it was PCOS. Over lockdown, my symptoms started to worsen, and new ones came up. I had a bald patch, and my periods became irregular.

“I asked my GP to run some blood tests.

“When I rang for the results, I spoke to a different GP. They said ‘I’m looking at your last tests, and it’s obvious to me that you have PCOS.’ I was overwhelmed. I’d been trying to get a diagnosis for decades.”

When Ms Ollennu started growing facial hair, a common side effect of PCOS, she flagged it to a GP, who told her it was down to her mixed heritage.

She told i: “I am not a hairy person. I spoke to a GP, who was not my usual doctor, and asked what I could do, and what it meant.

“He said ‘well, you’re of African descent, and African people are more hairy.’ He based it on his own wife, who is black and in her sixties, having facial hair.

“She’s post-menopausal, I’m 37. It’s not down to the colour of her skin. As a black woman, you’re constantly fielding racial stereotypes.”

What is PCOS?

PCOS is a hormonal imbalance disorder that affects roughly 1 in 20 women, and those assigned female at birth (AFAB).

Most commonly, PCOS is caused by an excess of insulin, which increases androgen production and a higher than average level of testosterone, making it difficult to ovulate.

Multiple, small cysts can form on the ovaries which are caused by follicles which don’t mature enough for an egg to be released.

However, this isn’t the case for everyone, and no-one knows what causes PCOS, but you are more likely to have it if a family member does.

PCOS can be managed, but it it cannot be cured.

Emily Craig, 25, was diagnosed with PCOS seven years ago after her periods stopped when she came off the pill.

Ms Craig, an e-commerce worker, from Warrington, said after “being passed from pillar to post” by doctors and even warned she may have cancer, she paid to see a private clinician who diagnosed her with PCOS.

But when she asked for information on her treatment options, she said she was told to come back when she had decided to “try for a baby” despite her condition putting her at risk of diabetes and heart disease.

“I was told to take folic acid, and then come back when I decided to have a family,” the e-commerce worker who lives in Warrington told i. “Any care is based around whether or not you want a child, but I don’t know if that’s even in my life plan.

“I’m most bothered by the mood swings caused by PCOS, and the excessive facial hair. I’m pale and blonde, so it’s very noticeable.

“I struggle with my weight, and if I so much as sniff a cake I pile on the pounds.

“People with PCOS often struggle to manage their weight because of how we metabolise sugar, and we have less risk of getting anything even more serious if we keep our weight down.

“There’s this attitude that ‘it is what it is,’ but it’s quite an upsetting diagnosis.

“I do understand the NHS is overstretched, but I would like to know my symptoms and my health matters even if I decide I don’t want kids,” she added.

Georgia*, 29, was diagnosed with PCOS in her final year of university.

“I’m disabled and I struggle with a few chronic health conditions, all of which were diagnosed in my adulthood because my family GP dismissed me routinely,” the social activist who lives in London told i.

“I found out I had PCOS at 21 after a doctor at university linked the acne covering my face and thighs with an off-hand comment that I didn’t really get any periods.

“I was told by my mum that it was something that affected women in the family, and I’d never heard of PCOS.

“My relief was short lived when my diagnosis came back, and the doctor told me I’d better have kids before I was 34 if I wanted to conceive.

“I have so much anxiety about having children before then, even though a specialist told me last year that it was categorically untrue, and I’d have a good chance if I made the right dietary and lifestyle changes.”

How PCOS is diagnosed on the NHS

“Clinicians use the Rotterdam criteria, developed in 2003, to make the diagnosis,” Meg Wilson, Consultant Gynaecologist at London Gynaecology, told i.

Women must have at least two out of three of the following issues:

  1. Appearance of polycystic ovaries on ultrasound scan
  2. A hormonal imbalance, where the testosterone levels are high on blood tests (hyperandrogenism). Ovaries produce the “female” hormones, such as oestrogen and progesterone and also very small amount of the “male” hormone, testosterone. When the level of testosterone in the blood goes over a certain level, it can cause some of the common symptoms of PCOS like acne and unwanted hair growth.
  3. Irregular periods – Failure to ovulate every month (anovulation) leading to infrequent or absent periods.

Georgia wants to take metformin, which is one of the two treatments used to treat PCOS available through the NHS. The medication is off-label and its efficacy is contested but she is struggling to manage her high blood sugar levels and weight gain through diet alone and would like to try it.

She said: “When I asked a doctor for metformin, he said he could only refer me to a specialist to prescribe it if I was trying for a baby. I felt really angry.

“PCOS is so common, but the information is stuck in the dark ages.”

Dr Bajekal, who has written a book about managing the condition through dietary and lifestyle changes, said:…

[ad_2]

Read More:Women diagnosed with PCOS told they can only access medication if they’re ‘trying for a