Image source, Emma Williams-Tully
A woman who experienced chemical menopause at age 20 due to undiagnosed endometriosis has said she wouldn’t wish it on anyone.
Emma Williams-Tully, 39, from Wrexham, started having extremely heavy periods when she was 10.
Despite “back and forth” between different health professionals, endometriosis was not mentioned again for a decade.
The Welsh Government has admitted improvements are needed in endometriosis and menopause care in Wales.
- Author, Catriona Aitken
- Role, BBC News
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For Emma, the process of being diagnosed with endometriosis took another 11 years, during which time she was treated with a chemical injection called Prostap to manage the symptoms.
“As far as the pain and the bleeding, it was incredible. But the menopausal symptoms, physically and emotionally, were hell on earth,” she said.
She suffered from depression, hair loss, fatigue, brain fog and hot flashes.
“I didn’t feel like a 20-year-old anymore, I felt like an old woman.”
Endometriosis is a condition in which tissue similar to the lining of the uterus grows in other places, such as the ovaries and fallopian tubes.
Prostap suppresses a woman’s ovarian function, stopping the production of estrogen – which fuels endometriosis – as well as progesterone and testosterone.
This causes temporary menopause, but does not cure endometriosis. It is often used to check if this is the problem, before embarking on invasive surgery.
But estrogen may be needed for other things, including a healthy heart, brain, and bones.
Treatment such as hormone replacement therapy (HRT) may be offered to women going through menopause, either naturally or chemically, to reintroduce estrogen into their bodies.
But because endometriosis feeds on estrogen, it can be difficult to navigate.
Emma said she was only offered ‘generic HRT’ to combat the side effects of Prostap, but was not told it could make her condition worse and so decided to stop taking it.
She said the common association of menopause with older women left her feeling isolated and unable to share what she was going through, even with close friends.
“I felt very alone and very vulnerable.
“There are so many different ways to go through menopause… it can be okay for some people, but it can be quite brutal for others, so we need to break that taboo.”
When it all started for her, she had just met her current husband, Dan, and wanted to enjoy life like her peers.
Image source, Emma Williams-Tully
Emma said she was never told what Prostap would do or asked if temporary menopause was something she was prepared to go through.
The injections relieved her symptoms, so it was suspected that she had endometriosis. But laparoscopic surgery revealed no signs of the problem, setting off a “vicious cycle” between surgery and Prostap.
She only stopped treatment to try to have a baby, which “was not easy” due to “indescribable” pain.
“You try to make it happy and it was horrible. Luckily I got pregnant naturally, but as soon as I gave birth I felt the symptoms again.”
At age 31, Emma’s organs were so damaged that she had to have a hysterectomy, which is the removal of her uterus.
But a piece of fallopian tube was accidentally left behind, causing the ovary to grow back only to be discovered during an unrelated ultrasound.
With her estrogen levels “through the roof” after the operation, it was called a “conundrum” and not taken seriously, she said.
“There are so many misconceptions… it feels like you’re constantly having to Google things and think, ‘If I don’t educate myself, what state am I going to end up in?’”
Emma now has an ileostomy, as well as colitis and bladder problems, and is awaiting removal of her colon and rectum.
“I wouldn’t wish it on anyone,” she said.
Katharine Gale, 50, is a women’s health nurse from Lampeter, Ceredigion. She also suffers from endometriosis and was taking a drug called Zoladex, similar to Prostap, in her 30s.
When perimenopause began in her early 40s, she realized that many women were not equipped to handle it.
“I was on my knees, I was really overwhelmed and exhausted,” she said.
She said one in 100 women were under 40 when they began menopause.
“For women who are going through this at a much younger age, when their friends are starting to think about starting a family or they are in college, it can be really difficult.”
She said “we need to talk more about menopause”, adding there was a “lack of awareness” of the help available.
“I think we are really failing in our mission to women in terms of health.”
Image source, Katharine Gale
“A lottery by postal code”
Dr Michelle Olver, a consultant in sexual and reproductive health, runs a specialist menopause clinic within Aneurin Bevan University Health Board, as well as a private clinic covering South Wales.
She said it was difficult to balance the symptoms of endometriosis with the side effects of switching hormones off and on again, stressing that health services were moving away from a “one size fits all” approach but admitting access to support was a “postcode lottery”.
Dr Olver also teaches courses on menopause to medical students at Cardiff University, but such courses were not offered when he trained.
Image source, Emma Williams-Tully
Emma worries about the future, especially for her nine-year-old daughter, Belle.
“It petrifies me,” she said.
“I don’t think my daughter really understands what mommy’s tummy troubles are because I don’t want to scare her.”
She added: “I have young people who message me every day saying they have terrible problems and no one believes them.”
The Welsh Government said Health Secretary Eluned Morgan had “made clear her commitment to improving women’s health services”, with a 10-year women’s health plan for Wales due to be published by the end of this year.
“We recognise that there are improvements to be made in menopause and endometriosis care, treatment and support and that greater consistency in these services is needed across Wales,” he said.