Hormonal health
Survey calls for renaming of PCOS to better reflect condition
A global survey is underway to rename polycystic ovary syndrome (PCOS) to better reflect the condition and its impact on millions of women worldwide.
PCOS can cause a variety of symptoms including hormonal imbalances, excessive androgen levels – male hormones also produced in smaller amounts by women – and irregular periods, and is a leading cause of infertility.
The name has been labelled misleading, as research has confirmed the “cysts” on the ovaries are actually small fluid-filled sacs – underdeveloped egg follicles not released as expected during the menstrual cycle.
Women’s health professor Helena Teede said PCOS was “one of the most neglected, poorest understood conditions”.
She said: “It’s not just about the ovaries, it’s actually a hormonal condition.
“As a clinician, what I was seeing was the condition wasn’t being diagnosed, getting appropriate attention, prevention or treatment, research or education, and it was really challenging for those people who are affected.”
The renaming initiative is driven by the nationally funded Centre for Research Excellence in Women’s Health in Reproductive Life at Monash University.
The current survey, which has garnered more than 6,500 responses so far, offers three different approaches: keeping the acronym PCOS but changing the words each letter represents; creating a new name that better reflects the pathology and symptoms; or finding a generic name.
Once a consensus is reached, the ultimate goal is to have the name changed in the International Classification of Diseases.
Caitlin Videon was diagnosed with PCOS when she was 16.
She experienced a swathe of symptoms, including excessive hair growth, weight gain, depression and suicidal ideation.
After living with PCOS for two decades, the 36-year-old – who has also been diagnosed with endometriosis and adenomyosis – said trying to explain the condition was difficult.
She said: “I’ve even struggled to articulate it to doctors who have as part of their bio they’re well-versed in female reproductive conditions and issues.
“The name change will help capture how significant and intricate the disease can be when we’re talking about the entire female body.”
Riverland-based accredited dietician Felicity Morrell said she saw women every week with PCOS who were “just banging their heads against the wall with conflicting information and unsure of where to go”.
She said: “A lot of clients have said to me the title can be a little bit confusing.
“I think having a title that gives a better indication as to the scope of issues these ladies are trying to deal with could be really helpful.”
The global survey is open until the end of August.
Professor Teede said there was already a consensus from those working in the field that the name needed to change, and there was no scenario where the name change would not happen.
She said: “The aim is to finish the formal process by the end of the year and then to look at the dissemination strategies early next year.
“There’s a strategy that goes across about 15 different ways of implementing. But the ultimate one is changing the name.
“We are very excited, especially on behalf of those who are affected, and really looking forward to the positive changes that will come because of it.”
Insight
Topical HRT protects bone density in women with period loss – study
Transdermal HRT best protects bone density in women with functional hypothalamic amenorrhoea, a condition that stops periods, a review of trials has found.
The meta-analysis pooled randomised clinical trials involving 692 participants and found transdermal hormone replacement therapy and teriparatide increased bone mineral density by between 2 and 13 per cent.
Functional hypothalamic amenorrhoea can follow anorexia or intense exercise. Bone mineral density measures bone strength and the amount of mineral in bone.
Around half of women with the condition have low bone mineral density, compared with about 1 per cent of healthy women, and their fracture risk is up to seven times higher.
The research was conducted by scientists at Imperial College London and Imperial College Healthcare NHS Trust.
Professor Alexander Comninos, senior author of the study and consultant endocrinologist at the trust, said: “Bone density is lost very rapidly in FHA and so addressing bone health early is very important to reduce the lifelong risk of fractures.
“Our study provides much needed comparisons of all the available treatments from all available studies.
“Clearly the best treatment is to restore normal menstrual cycles and therefore oestrogen levels through various psychological, nutritional or exercise interventions – but that is not always possible.
“The foundation for bone health is good calcium and vitamin D intake (through diet and/or supplements) but we have additional treatments that are more effective.”
When FHA is diagnosed, clinicians first try to restore periods through lifestyle measures, including psychological and dietary support, but these can fail. Guidelines then recommend giving oestrogen, though the best form was unclear.
The team reviewed all prior randomised trials comparing therapies, including oral and transdermal oestrogen, and also assessed teriparatide, a prescription bone-building drug used for severe osteoporosis.
They found no significant benefit for oral contraceptive pills or oral hormone therapy.
A recent UK audit reported that about a quarter of women with anorexia-related FHA are prescribed the oral contraceptive pill for bone loss; the study suggests using transdermal therapy instead.
Comninos said: “Our goal is simple: to help women receive the right treatment sooner and to protect their bone health in the long-term.
“We hope this study provides clinicians with better evidence to choose transdermal oestrogen when prescribing oestrogen and so inform future practice guidelines.
“Right now, millions of women with FHA may not be receiving the best treatments for their bone health.”
Entrepreneur
US startup builds wearable hormone tracker
Wellness
IBSA UK launches non-hormonal injectable for menopause symptoms
IBSA UK has introduced Hyaluxelle, a non-hormonal menopause treatment for vulvo-vaginal atrophy, easing vaginal dryness and pain during intercourse.
Hyaluxelle is given as deep intradermal injections to the vulvar vestibule, the area at the vaginal opening, in two sessions one month apart, followed by clinical reassessment.
IBSA UK is the UK subsidiary of Swiss pharmaceutical company IBSA.
Vulvo-vaginal atrophy is a key feature of genitourinary syndrome of menopause, a long-term condition caused by low oestrogen that affects genital, urinary and sexual health.
At least half of post-menopausal women are affected, yet many do not seek help, often assuming symptoms are part of ageing.
The condition stems from thinning and drying of vaginal and vulval tissues linked to low oestrogen, leading to symptoms such as dryness, discomfort, altered pH and pain during intercourse.
Hyaluxelle combines high and low molecular weight hyaluronic acid, a moisture-retaining substance found naturally in the body.
The company says this creates a lower-viscosity injection at what it describes as the highest concentration available in the UK, supporting tissue hydration, firmness and elasticity.
The formulation is said to rehydrate the vulvar vestibule and create conditions for restoring tissue structure through collagen and elastin production.
Clinical studies indicate Hyaluxelle improves several vulvo-vaginal symptoms, including reductions in discomfort and pain during intercourse.
Studies also report gains in sexual function domains and a positive trend in some aspects of health-related quality of life.
Histological analyses suggest increased epithelial thickness, enhanced tissue regeneration and reduced inflammatory infiltration after the procedure. In studies, the treatment was well tolerated with no reported major complications.
Joanna, a 59-year-old woman living with severe symptoms, described the personal impact of delayed diagnosis.
She said: “I lived for years with pain, UTIs, cystitis and a loss of sensation, but every visit to my GP, even a female GP, was treated as a bladder issue.
“Nobody suggested it might be linked to the menopause or joined the dots, and none of the treatments I was given helped. Without the right information or support, I became desperate for answers.
“The symptoms affected everything, what I wore, how I exercised, how I slept, but the hardest part was the impact on intimacy with my husband.
“I withdrew from our relationship because I was scared sex would hurt, and the loss of closeness was devastating, and I no longer felt like myself.
“Women deserve clear explanations and real options when their symptoms are not getting better.”
IBSA says Hyaluxelle offers clinicians an option for women whose symptoms persist despite first-line therapies, or for those who cannot receive or choose not to receive hormonal treatments.
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