Personal Journey with PCOS Diagnosis
For Rochelle Lewis, it took several years to identify the cause of her symptoms, which included pain, excessive facial hair, and bloating. The diagnosis was "absolutely devastating" as she learned the condition could impact her ability to become a mother.
Lewis is among over 170 million women worldwide diagnosed with polycystic ovary syndrome (PCOS), a disorder characterized by elevated levels of male hormones in the body.
She received her diagnosis in February last year, describing it as a "long time coming" after enduring years of symptoms and medical tests.
Upon learning that PCOS could affect her fertility, Lewis said she felt "like my whole world had come to an end."
"One of the things that I've always wanted in life was to become a mum," she said.
"When you have an idea of your life and how it's going to pan out from a little girl, to then be told 'actually, the one thing that you want most is most likely not going to happen'. It's absolutely devastating."
Motivated by her experience, Lewis established her own wellness business. She later conceived her son, who is now three months old.
Renaming PCOS to PMOS
In May, the condition was renamed from polycystic ovary syndrome (PCOS) to polyendocrine metabolic ovarian syndrome (PMOS). The International PCOS Network stated that the change aims to enhance understanding, diagnosis, and treatment of the condition.
Lewis, who had frequent consultations with doctors since around age 18, hopes the new name will facilitate quicker diagnoses for more women. However, she expressed skepticism about whether the change will lead to broader improvements.
"I just think that we get told that you have PCOS and you get left to it," said the 31-year-old from Birmingham.
The NHS reports that PCOS affects up to one in ten women in the UK. Common symptoms include irregular periods, excess hair growth, and weight gain.
Charity Perspective on the Name Change
Kate Morris, representing the charity Verity PCOS, expressed hope that the renaming will encourage more women to be referred to specialists familiar with the endocrine and metabolic aspects of the condition.
"It will give patients the leverage to say... 'it's in the name, what's happening to me is metabolic and endocrinological'," she said.
PCOS/PMOS is a hormonal disorder with no cure, but treatments exist to alleviate symptoms. It involves elevated male hormone levels and can cause fertility difficulties.
The NHS also notes that the condition is linked to high insulin levels and an increased risk of type 2 diabetes later in life.
Experiences of Women with PMOS
Shireen Forster, diagnosed at 18, founded LaserMeOut, which operates a clinic in Birmingham, after personally dealing with excessive hair growth.
She observed that many women attending her clinics struggle with confidence due to distressing symptoms such as excessive hair on the face, chest, and back.
"It completely took away their confidence," she said.
The 33-year-old Londoner welcomed the name change, stating it better reflects the condition as a systemic issue rather than one confined to the ovaries.
"This is not just cysts in women's ovaries," she said.
"This is your metabolic - the way your body produces energy. This is your endocrine system... your hormonal system. It's all these things linked."
Forster, who gave birth to her first child last year, expressed pride in the renaming and its potential to improve understanding of the condition.
She also highlighted the need for increased peer support, noting that women desire more opportunities to connect and share experiences.
"There needs to be more of a community. All they want to do is meet up with other women who are going through this and just sit down and [and] have a talk."
Support Groups and Advocacy
Verity PCOS, which operates several volunteer-led support groups in regions including Coventry and Warwickshire, Staffordshire, and Worcestershire, has advocated for the name change for over ten years.
Kate Morris, a volunteer and former trustee from Meriden near Coventry, was diagnosed at 19. She recounted difficulties obtaining a diagnosis in the 1980s before finally being diagnosed by a locum GP.
"I wasn't happy. I knew my body wasn't functioning properly and I wasn't prepared to just put up with it," she said.
"She then said: 'Come back when you want to have children' - which is what people always hear at the time."
Morris established the Coventry and Warwickshire support group and described the name change as "momentous" for those affected.
She hopes it will lead to more women being referred to specialists, including endocrinologists who manage hormone-related conditions.
"When I meet a new patient, one of the first things I do is tell them that the name is nonsense," Morris said.
"The name is misleading, this isn't about your ovaries and that's one of the massive dangers."
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