Why is my fertility more important than my endometriosis pain?

Emily Griffiths wants to have a surgery to remove her uterus, known as a hysterectomy.

At 26 and childless, she knows this is a big step. but endometriosis and Adenomyosis She was housebound, in debilitating pain, and unable to see a future as a mother.

Now she just dreams of being able to go for walks without help. But because of her age, she says she hasn’t been able to find a clinician to discuss the procedure with her.

Emily, from Carmarthenshire, said: ‘The doctors are too busy planning for the children I might want in the future to see where I am now.’ .

Emily’s symptoms began at the age of 12, when her menstrual cramps and pain were so severe that she missed school and became anemic.

She said her GP told her the pain was normal.

“People would say it was all in my head and I was just trying to skip school,” she said.

Emily was diagnosed with endometriosis at the age of 21 after coming down with sepsis.

She said she was referred to a specialist center in Cardiff, but due to long waiting times, her family had the surgery done at their own expense.

Emily said she was unable to see an NHS specialist, had seen fewer private clinicians and felt she received “zero” support from the health service.

The hysterectomy could make Emily infertile, accelerate menopause and increase her risk of osteoporosis, heart disease and dementia.

But for the past three years, she has been receiving monthly injections to chemically induce menopause to alleviate symptoms and have stopped her periods.

Scans showed it caused her to lose bone density.

“Hysterectomy is not a treatment for endometriosis, but it is a treatment for adenomyosis,” she said, adding that she was 23 years old when she received the additional diagnosis.

“When I’m really struggling, even if it’s a big step, I might even go for a little walk…but I’m stuck in a very dark place at the moment.”

Hysterectomy is a major surgery with a long recovery time and is only considered after less invasive treatments.

It is done to treat health problems that affect the female reproductive system.

A total hysterectomy is the surgical removal of the uterus and cervix.

In some cases, the fallopian tubes, ovaries, lymph glands, or part of the vagina may be removed.

Adenomyosis A disease in which the endometrium begins to grow into the muscle of the uterine wall.

In addition to menstrual pain and heavy bleeding, it can cause pelvic pain, bloating, and pain during sexual intercourse.

endometriosis This is where cells similar to those found in the endometrium grow in other parts of the body.

Symptoms occur when these spots break and bleed but are unable to leave the body.

The endometriosis has now spread to both of Emily’s ovaries, uterus, bladder and parts of her intestines.

Her menopausal symptoms were also severe, and hormone replacement therapy (HRT) worsened her endometriosis.

Because of the complexity of her case, Emily will need an endometriosis specialist because her hysterectomy will also involve removal of the endometriosis.

Hysterectomy is listed as one of many treatment options. nice For endometriosis and adenomyosis.

endometriosis uk She said that while she could not guarantee that a hysterectomy would completely eliminate pain and symptoms, “it’s important to remember that the ultimate choice is yours and your body.”

Emily said that sentiment contradicted her own experience.

“I really don’t think women have the freedom to choose their bodies,” she says.

“Once I had settled down, he told me that my husband and I might want to have children, but that was just planning for the future, and they didn’t understand where I was right now. There just aren’t any.

“Fertility has basically taken precedence over any of my illnesses or what I’m going through.”

Emily said she was advised to continue with chemical menopause and try “running, Pilates and yoga” in addition to birth control pills and antidepressants.

“I can’t walk without support, so talking about Pilates or running is not a very good comment,” she said.

Emily has been recognized by the King and Princess of Wales for her work in raising awareness of the issues they face.

“I’ve had some really great opportunities…and that’s what keeps me kind of holding out hope,” she said.

There are currently two accredited NHS endometriosis centers in Wales, in Swansea and Cardiff.

The Swansea center is currently not accepting patients from outside the health board’s area, but Cardiff City Council said it would consider referrals from outside the city “as appropriate”.

Every health board has an endometriosis nurse to support patients, but Emily, who lives in the Hywel Dda Health Board area, said long waiting times meant she had little choice but to seek private care. Ta.

“There have been two privately funded surgeries so far and there is probably another one on the way,” Emily said.

Follow-up care and advice also costs money.

“There is currently no one in the NHS to monitor me, so it’s a never-ending cycle of funding and finding the right person,” she said.

“If I have questions, the particular medication prescribed may not be right for me. There’s always a cost to that. I can’t just call and find out.

“I understand that if you are going to get private healthcare you would do that, but if the NHS isn’t going to help you either then you don’t have a choice.”

Sioned Williams, social justice and equality spokesperson for Plaid Cymru, learned of Emily’s case after she raised it with her local Senedd MP (MS).

“The Welsh Government has been too slow to develop a women’s health plan,” Ms Williams said.

“Endometriosis patients like Emily just want to be heard and believed, and they shouldn’t ask for too much.”

Welsh Conservative health spokesperson Sam Rowlands said: “The Welsh Conservatives will immediately scrap restrictive NHS guidelines that keep patients local and prevent them from working across local communities and across borders. “We will use excess capacity to reduce excessive NHS waiting times.” In the short term, we aim to enact a substantive workforce plan to address deeper-rooted issues in the long term. ”

A Welsh Government spokesperson said women’s health was a “key priority” and a 10-year women’s health plan would be published in December.

“The Women’s Health Network, led by Wales’ first clinical leader in women’s health, has been set up to deliver improvements in endometriosis care, treatment and support,” they said.

“Health boards are responsible for delivering services and we fund specialist endometriosis nurses within each health board.”