Menopause: Woman with endometriosis shares medication story

Endometriosis is a condition in which tissue similar to the lining of the uterus also grows in other places, such as the ovaries and fallopian tubes.

Prostap suppresses the function of the ovaries in women, thereby stopping the production of estrogen (which stimulates endometriosis) and of progesterone and testosterone.

It puts them into temporary menopause, but is not a cure for endometriosis. It is often used to test whether that is what is wrong, before invasive surgery is performed.

But estrogen may also be needed for other things, such as a healthy heart, healthy brain, and healthy bones.

Women going through menopause may receive treatment such as hormone replacement therapy (HRT), either naturally or chemically, to add estrogen back into their system.

But because endometriosis is fueled by estrogen, it can be difficult to manage.

Emma said she was only offered a ‘generic HRT’ to combat the side effects of Prostap, but was not told it could make her condition worse, so she decided to stop taking it.

She said menopause is often associated with older women, leaving her feeling isolated and unable to share what she was going through, even with close friends.

“I felt very alone and vulnerable.

“People go through menopause in so many different ways. For some it can be okay, but for others it can be quite intense. It’s important to break that taboo.”

When it started for her, she had just met her current husband Dan and wanted to enjoy life like her peers.

Emma says she was never told what Prostap would do and was never asked if she was willing to undergo a temporary menopause.

The injections relieved her symptoms, so it was suspected she had endometriosis. But keyhole surgery found no sign of it, leading to a “vicious circle” of surgery and Prostap.

She only stopped when she tried to conceive, which was “not easy” because of the “indescribable” pain.

“You try to make it a joyful time and it was horrible. I luckily conceived naturally, but as soon as I gave birth I felt the symptoms again.”

At the age of 31, so much damage had been done to Emma’s organs that she had to undergo a hysterectomy (removal of the uterus).

But a piece of fallopian tube was accidentally left behind, causing the ovaries to grow again. This was only discovered during an ultrasound that had nothing to do with it.

Her estrogen levels had “gone through the roof” after surgery and it was dismissed as a “mystery” and not taken seriously, she said.

“There are so many misconceptions… it seems like you’re constantly Googling things and you’re wondering, if I don’t educate myself properly, what state am I going to end up in?”

Emma now has an ileostomy, 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 in Lampeter, Ceredigion. She also has endometriosis and used a drug called Zoladex, similar to Prostap, in her 30s.

When she reached her early 40s and menopause set in, she realised that many women couldn’t cope.

“I was on my knees, I was overwhelmed and burned out,” she said.

She said that one in a hundred women is under 40 when she goes through menopause.

“For women who go through this at a much younger age, when their friends are already starting to think about having a family or when they themselves are in university, it can be quite a challenge.”

She said “we need to talk more about menopause” and added that there is a “lack of awareness” about the help available.

“I think we really fail women when it comes to their health.”

Dr Michelle Olver, a consultant in sexual and reproductive health, leads 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 off and re-introducing hormones. She stressed that health services were moving away from a ‘one size fits all’ approach, but admitted that access to support was a ‘postcode lottery’.

Dr Olver also teaches medical students at Cardiff University about the menopause, but such classes were not offered when she was training.

Emma worries about the future, especially about her nine-year-old daughter Belle.

“It scares me to death,” she said.

“I don’t think my daughter fully understands what mommy’s stomach pain is because I don’t want to scare her.”

She added: “Every day I get messages from young people saying they have terrible problems and no one believes them.”

The Welsh Government said Health Minister Eluned Morgan had “made it clear that she is committed to improving women’s health care”. A 10-year plan for women’s health in Wales is due to be published by the end of this year.

“We recognise that improvements are needed in the care, treatment and support for menopause and endometriosis and that greater consistency in these services across Wales is needed,” the report said.