‘I thought the pain was all in my head’: Gynecological ordeals shared

Women and girls in Britain with gynecological conditions such as endometriosis and adenomyosis have suffered years of pain due to “medical misogyny”, according to a parliamentary report.

The Women and Equality Committee report found that women with reproductive conditions faced inadequate care due to “pervasive stigma” and symptoms being “normalized” by healthcare professionals.

Here, five people share their experiences with the diagnosis and treatment of their gynecological pain.

‘A lot of my life has been wasted because of misogynistic attitudes‘

In Yorkshire, 72-year-old pensioner Shirley remembers that her pain started when she was 27, after the birth of her two daughters. As a teenager, she always had heavy periods, but as she got older, the pain became so bad that she ended up on her knees.

When she tried to get a diagnosis, she felt like she was being ignored. “It was horrible and it was as if the health workers didn’t want to know. I went from doctor to doctor and felt treated like a child. I started to think that the pain was all in my head and that I was going crazy – I was even prescribed antidepressants,” says Shirley.

She gave up for a while and managed to take painkillers, use hot water bottles and take warm baths every day. “Sex was painful and every day was a slog.” About 15 years later, she underwent two laparoscopies and after the second, she was diagnosed with endometriosis and fitted with an IUD.

Looking back on her own experiences, she worries about young women today. “I feel like a lot of my life was wasted because of the ignorance and misogynistic attitudes of the doctors I encountered. My heart goes out to women who are still having trouble getting diagnosed today. In this day and age, when medical research and results for other conditions have made great strides, this should not continue to happen.”

‘Women of all ages are being fired’

Vicky Gibbons, a 25-year-old marketing director from Southport, started suffering from severe menstrual pain at the age of 14, which became so bad that she often had to miss long periods of school. “Not only was it severe pain that lasted about 24 hours, but I also vomited for hours and developed gastrointestinal problems,” says Gibbons.

Instead of a thorough investigation by healthcare professionals into the cause of the severe menstrual pain, Gibbons was prescribed the birth control pill at age 14 as a way to control her periods.

Gibbons says: “Although the doctors were always nice to me, they never really had much to offer me in terms of information and support. They were like, ‘Oh, here’s the pill.’

“They just wanted to give me something quick, so I was out of there and done. It’s terrible that the pill was the only option I had to get rid of my gynecological pain.”

The report’s findings did not surprise her. “Not just from my own experience, but even my mother’s, women of all ages are getting fired,” Gibbons says.

“I don’t feel like a report necessarily has to show that. If you talk to women of any age, they will somehow feel like their painful symptoms are ignored or ignored. But I think it’s good that the government is finally doing something about it. It’s good, but it’s late.”

‘It really affected my mental health‘

“It was only when I found it difficult to urinate that I was sent for my first ultrasound,” says 46-year-old Anne, who works as an occupational therapist for the NHS in south-east England. She first started experiencing pain at age 40, when her periods became increasingly heavy, longer, and painful. “It really affected my mental health and I started to feel depressed, consumed by the pain,” says Anne.

In August 2023, she was diagnosed with large fibroids and later referred to gynecology where she was seen in October this year. “A number of options were discussed, but ultimately we opted for a hysterectomy. I was actually supposed to have it tomorrow, but my pre-op last week showed I was too anemic (due to excessive blood loss), so it’s currently on hold until my body is strong enough.

As someone who works for the NHS, Anne says the doctors she has seen have been exceptional, but understands the service is overstretched. “I can’t imagine the frustrations people on waiting lists must feel. It’s hard for me because I love the NHS. After ten months of waiting, I was offered to go to a private hospital, but I turned it down because it felt duplicitous. I really believe in the NHS and what it has to offer.

“I still try to work because I think what I do is important. It’s hard when I’m overflowing though because my periods are so heavy. Once I got a blood clot in the back of my leg and had to ask a colleague to help me.”

“The pain is like scraping the inside of my uterus with a rusty fork.”

Bean, who is 32 and works at a university in Manchester, started having her period at the age of 13. “I remember my second period when I was shopping with my family and the cramps started when we were wearing shoes. store,” says Bean. “The pain was so excruciating that my mother had to leave me on a park bench while she went looking for a pharmacy to buy me some painkillers.

“The pain has always been terrible, as if I had scraped the inside of my uterus with a rusty fork. But the doctors made me think this was just normal period pain.”

They tried different types of contraceptives to ease the pain, but sometimes found that it only made things worse. “I tried the vaginal ring, but ended up with painful spasms in my anus. The worst development, however, are the painful orgasms. It feels like a cruel trick: have I offended the gods?”

In 2017, a year after Bean came out as transgender to their close friends, they underwent a laparoscopy and were diagnosed with endometriosis. They had surgery, which helped, but the pain has returned. “It was confirmation that I had a label for my pain, but I was constantly misled in my interactions with the healthcare system, which was exhausting and upsetting.”

The Women and Equality Committee report highlighted issues with access to care for trans, non-binary and intersex people and recognized the “distress” that reproductive health issues caused.

The report says: “We tend to use the term women and girls throughout the report, but these conditions also affect other people, including trans men, non-binary people and anyone registered as female at birth, who face additional challenges can get. We want the quality of life to be improved for everyone who may be experiencing reproductive ill health.”

Bean adds: “Since I started testosterone therapy, I’ve been trying to figure out what the right levels are. If a dose is too low, I get menopausal-type symptoms such as hot flashes. It’s frustrating. I’m afraid I may have to make a difficult decision between taking testosterone or treating my endometriosis. It sucks.”

‘I was told my period had just started and I didn’t know how to deal with the pain’

Zaynah Ahmed, an 18-year-old student, started having painful periods at the age of 12. “I was still quite young. I was often dismissed because I was always told that my period had just started and that I didn’t know how to deal with the pain,” says Ahmed. Her experience with painful periods became so bad that she had to be admitted to hospital because her blood values ​​were so low and a blood transfusion was required.

It took another five years before Ahmed was diagnosed with endometriosis and adenomyosis, in addition to chronic anemia. “The diagnosis was a big relief for me because I just wanted whatever this was to have a name so I wouldn’t feel slighted and that there was nothing wrong with me because I had been officially diagnosed.”

Ahmed believes her age also played a role in why she felt like she wasn’t being taken seriously by healthcare professionals. “I think they didn’t believe me because I was still quite young, and that was always a reason they tried to postpone what I was going through.”