‘I was made to think the pain was all in my head’: gynaecological ordeals shared

Women and girls in the UK with gynaecological conditions such as endometriosis and adenomyosis have spent years in pain due to “medical misogyny”, according to a parliamentary report.

The women and equalities committee report found that women with reproductive conditions faced inadequate care due to a “pervasive stigma” and symptoms being “normalised” by healthcare professionals.

Here, five people share their experiences of being diagnosed and treated for their gynaecological pain.

‘A large part of my life has been wasted through misogynistic attitudes’

In Yorkshire, 72-year-old retiree Shirley remembers her pain starting when she was 27 after the birth of her two daughters. She always had heavy periods as a teenager but when she was older the pain got so bad she would end up on her knees.

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

She gave up for a while and managed by taking painkillers every day, using hot-water bottles and taking hot baths. “Sex was painful and every day was a slog.” About 15 years later she had two laparoscopies and after the second one she was diagnosed with endometriosis and fitted with a coil.

Looking back on her own experience she worries about young women today. “I feel like a large part of my life has been wasted through the ignorance and misogynistic attitudes of the doctors I encountered. My heart goes out to women who are still experiencing issues getting diagnosed today. In this day and age, when medical research and achievements for other conditions have made great steps, this should not still be happening.”

‘Women of all ages are being dismissed’

Vicky Gibbons: ‘The only option I had to stop my gynaecological pain was the pill.’ Photograph: Vicky Gibbons/Guardian Community

Vicky Gibbons, a 25-year-old marketing director from Southport, began experiencing severe period pains at the age of 14, which became so bad that she would often have to miss long stints at school. “Not only was it severe pain that lasted for around 24 hours, but I would throw up for hours on end and had gastrointestinal issues,” Gibbons says.

Instead of having a thorough investigation by healthcare professionals into the cause of the severe period pains, Gibbons was prescribed the contraceptive pill at 14 as a way of managing her periods.

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

“They just wanted to give me something quick so I was out of there and done with. It is appalling that the only option I had to stop my gynaecological pain was the pill.”

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

“I don’t feel like a report needs to necessarily show that. If you talk to any women of any age they are going to have some sort of experience of feeling like their painful symptoms are ignored or dismissed. But I think it’s good that the government might finally do something about it. It’s good, but it’s late.”

‘My mental health was really affected’

“It was only when I was finding it difficult to urinate that I was sent for my first ultrasound,” says Anne, 46, who works as an occupational therapist in the NHS in south-east England. She first started experiencing pain when she was 40 when her periods became increasingly heavy, long and more painful. “My mental health was really affected and I began feeling low, consumed by the pain,” Anne says.

In August 2023 she was diagnosed with large fibroids and referred later to gynaecology where she was seen in October this year. “A few options were discussed, but ultimately we decided on a hysterectomy. I was actually meant to have it tomorrow but my pre-op last week showed I was too anaemic [due to excessive blood loss] so it’s currently postponed until my body is strong enough.”

As someone who works for the NHS, Anne says the clinicians she has seen have been exceptional, but understands the service is overloaded. “I can’t imagine the frustrations people on waiting lists must feel. It’s difficult for me because I love the NHS. I was offered to go to a private hospital after 10 months of waiting but I declined it because it felt duplicitous. I really believe in the NHS and what it offers.

“I’m still trying to work because I feel that what I do is important. It’s hard though when I end up flooding because my periods are so heavy. One time I got a blood clot stuck on the back of my leg and had to get a colleague to help me with it.”

‘The pain is like having the inside of my uterus scraped with a rusty fork’

Bean: ‘Doctors led me to think this was just normal period pain.’ Photograph: Bean/Guardian Community

Bean, who is 32 and works at a university in Manchester, started their periods when they were 13. “I remember my second-ever period being out on a shopping trip with my family, and the cramps came on while we were in a shoe shop,” says Bean. “The pain was so horrendously bad my mum had to leave me on a park bench while she went to find a pharmacy to buy me some painkillers.

“The pain has always been awful, like having the inside of my uterus scraped with a rusty fork. But doctors led me to think this was just normal period pain.”

They tried different types of contraceptives to help with the pain but at times found it made things worse. “I tried the vaginal ring but ended up with painful spasms in my anus. The worst development though has been the painful orgasms. It feels like a cruel trick – have I offended the gods?”

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

The women and equalities committee report highlighted problems with access to care for trans, non-binary and intersex people and acknowledged the “distress” that reproductive health conditions caused.

The report says: “We mostly 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 female at birth, who may face additional challenges. We want to see everyone’s quality of life who may experience reproductive ill health improved.”

Bean adds: “Since starting testosterone therapy I’m trying to work out what the right levels are. If a dose is too low I end up experiencing menopausal-type symptoms like hot flashes. It’s frustrating. I’m worried I might 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 manage the pain’

Zaynah Ahmed, an 18-year-old student, began experiencing painful periods at the age of 12. “I was 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 manage the pain,” Ahmed says. Her experience of the painful periods became so bad that she had to be hospitalised because her blood levels were so low and required a blood transfusion.

It took another five years for Ahmed to be diagnosed with endometriosis and adenomyosis, alongside having chronic anaemia. “The diagnosis was a big relief for me, because I just wanted whatever this was to have a name, so I wouldn’t feel belittled and that there was nothing wrong with me because I had been officially diagnosed with these conditions.”

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