“If endometriosis spreads just like my cancer, why is the wait so long?”

Lara Stevens says endometriosis is like a childhood cancer that can spread and damage multiple organs, but it can be treated with the urgency it needs. He said he feels that he has not been respected.

The 36-year-old, who was diagnosed with non-Hodgkin's lymphoma at the age of seven, said: “The endometriosis may be progressing and we don't know where it is or what will happen next.”

Gynecology waiting lists in Wales have increased by 92% in the past four years, but experts feel they are seen as less urgent than other surgeries.

The Royal College of Obstetricians and Gynecologists has called for long-term investment in women's health, and the Welsh Government has said this is a key priority and a women's health plan will be developed this year.

endometriosis It is a gynecological disease associated with menstruation, in which tissue similar to the endometrium is found in other areas of the body, such as the fallopian tubes, pelvis, intestines, vagina, and small intestine.

Rarely, it may also be found in the lungs, eyes, spine, and brain. It was once thought that the only place in the body where endometriosis did not occur was the spleen, but in 2020 it was discovered that endometriosis exists there too.

Symptoms include severe to debilitating pain, often in the pelvic region, fatigue, and menstrual cramps, and the condition is also associated with infertility.

Lara said she had been trying to get pregnant for four years, suffered multiple miscarriages, and after waiting even longer for fertility support, she chose to use her health insurance to undergo the surgery privately.

“I was suffering from endometriosis when I had the surgery, so I was disappointed that it wasn't seen as a priority,” she said.

“It was behind my bladder, around my intestines, and under both my ovaries. I hate to think what would have happened if I had waited.”

The university lecturer, who lives near Cardiff, said he was led to believe at the time that surgery would take four to five years.

“I was in my early 30s at that point, and I didn't want to think about the damage that endometriosis was doing to my organs, even though I was still trying to get into my late 30s.

“No woman knows when her period will end, so she's caught in the middle.”

Lara became pregnant soon after surgery to remove endometriosis and recently gave birth to her second child.

However, she said lesions remained in her intestines and would likely require further surgery.

She is currently being cared for by the NHS gynecology service, where waiting times for regular follow-up appointments can sometimes be long.

There are currently more than 50,000 women waiting for hospital gynecological services in Wales, with nearly half waiting longer than the target of 26 weeks and more than a third waiting more than 36 weeks.

“I personally understand why cancer is important,” she said.

“What I'm saying is that we should probably consider this as important as well, because this is a symptom that is unpredictable and can get worse and needs to be monitored.

“It’s even harder when you constantly feel like you’re fighting to get help.”

Recent NHS performance statistics show four other specialties have longer waiting lists than gynaecology.

However, when only those eligible for gynecological care are considered, waiting times for gynecological services per capita are on par with the worst waiting times in Wales, and worse than in England and Scotland.

Geeta Kumar, vice-chancellor of clinical quality at the Royal College of Obstetricians and Gynecologists and clinical director of women's services in north Wales, said there were multiple reasons for the rise in waiting lists.

“There's more awareness of women's health, which is good, but I also feel that women's health has been deprioritized for too long,” she says.

She said there was a concerted effort to move away from describing conditions such as pelvic pain, uterine prolapse and endometriosis as “benign gynecological conditions” and instead use the term “non-cancerous.” He said that it is being done.

“Gynecology was often prioritized lower than other surgical specialties when it came to the list of appointments because benign gave the perception that it wasn’t urgent,” she added.

The phrase is also seen by many patients as minimizing or trivializing symptoms that Dr. Kumar described as “extremely debilitating.”

“Women report not only physical harm, but also their mental health being affected, with some unable to leave their homes due to symptoms such as pain and bleeding.”

Senedd (MS) Plaid Cymru MP Delys Jewell, who is part of the Senedd (MS) cross-party group on women's health, said many women felt their symptoms were ignored and they fought to recover. He said that this is causing further delays in seeing a specialist. Referenced.

“Too often women are not believed or told that they have to live with pain,” she says.

“They've had chronic pain for years. They've been gassed out, they've been told they might just be suffering from anxiety, or that it might be all in their head. is.”

In July 2022, the Welsh Government released a quality statement on women's health, acknowledging “significant disparities in care between men and women”.

A target has been set to publish a 10-year women's health plan this year, with similar strategies announced for England in 2022 and Scotland in 2021, but Ms Jewell said wait times in Wales were longer. He said he was disappointed.

Liz Williams, vice-president of patient-led charity Fair Treatment for Women Wales (FTWW), said some members felt they had had to quit their jobs or were forced to quit their relationships as a result of their symptoms. He said that his company went bankrupt and that he had to take on debt to survive. I felt I had no choice but to pay for private medical care.

She added: “I don't believe women have fair access to services. Women are being let down.”