‘I almost died because I wasn’t listened to’: Women’s experiences in healthcare

She went to hospital where doctors discovered she was suffering from a pulmonary embolism (a blood clot in the lung) and rushed her into life-saving surgery. She hoped this would be the fix-all, the happy ending... but things only spiralled from there.

The now 40-year-old, from Texas in the US, told NationalWorld: “After the surgery, I wanted to understand what had happened, what had caused it, and what I could do to help myself. I could have died. I wanted to ensure this didn’t happen again.

“But I wasn’t given any understanding. When I spoke to one doctor, and I was asking him questions, he told me: ‘It’s not my job to educate you. If you want to know more, go to medical school.’

“On other occasions, I was calling about test results - asking for updates. But I wouldn’t get replies, I couldn’t get the advice I needed. So I made a mistake. I decided to stop taking the medication.”

This led to Denise suffering a second pulmonary embolism. Then, she was put on blood thinners - and told to keep taking them for six months. But at an appointment after two months, a doctor told her she didn’t need them anymore.

“I tried to argue with him. I told him I’ve only been on them for two months; I need to stay on them for six months. I said I should keep taking them.” But the doctor took Denise off the medication anyway, something which led to her third pulmonary embolism. "I almost died because I wasn't listened to," she said.

After that, Denise was put on blood thinners semi-permanently. “But my health was so bad,” she told NationalWorld. “I got out of breath from picking up a pen off the floor, or having a conversation. I couldn’t exercise. I couldn’t play with my children. I was depressed.

‘I was told there was nothing they could do’

“I kept asking for more help. I kept asking if anything else could be done. But I was just told all I could do was take the blood thinners. I kept being told there was nothing they could do. They were treating the symptoms, they weren’t fixing the problem.”

Denise was forced to live like this for years, until in 2022, she was hospitalised with pneumonia. While in hospital, she also contracted sepsis - and “finally”, a doctor she saw decided to do more testing and refer her to a pulmonologist. “He told me that the only thing that will help me is surgery,” she said. “Something I had been asking people to consider for years.”

In May 2023, Denise had the surgery - eight years after she had her first pulmonary embolism. “I felt like I could breathe again,” she said.

Olivia Lott, from Devon in southwest England, also experienced a challenging journey to a diagnosis. Her nightmare first began when she was 16, and started using contraception.

“I tried lots of different pills because none of them seemed to work for me,” she told NationalWorld. “I was either really sad or really angry. I felt like a shell of a woman. I just knew I wasn’t myself - not how I was before I took the pill.”

She decided she wanted to try a different form of contraception, and asked her GP if she could have the ‘coil’, or IUD. “My GP told me: ‘That’s not my area of expertise.’ And I thought, how can that not be your area of expertise? Women make up half of the population.”

Olivia kept pressing, but she kept being told to stick with the pill. “They also tried to put me on antidepressants, instead of taking me off the pill,” she said. “I felt like I was going crazy. I kept saying I just need an alternative.”

After two years of fighting, Olivia finally changed to the coil. “I felt mentally and emotionally a lot better - there was a lot of relief. I felt lighter.”

‘They weren’t listening to me’

Unfortunately, Olivia soon started getting “sharp, stabbing” pains. But she still tried to stick with the coil because it had been “such a fight” to even get there.

When she started to feel down again, though, she knew something had to change. “They just kept prescribing antidepressants. But I knew that wasn’t what I needed. I knew my body. Regardless, I kept getting fobbed off. They just weren’t listening to me.”

Eventually, when she was 26, Olivia had the coil removed and was completely off contraception for the first time since she was 16. “I felt like the fog had lifted. I felt clarity. I felt like myself again.”

But once she came off contraception, she found that her periods were “horrendous”. She explained: “I would be doubled over in pain, crying. I had to phone 111 at one point because I would not stop bleeding.”

The call handlers at 111 told Olivia to go to A&E. Here, she found herself encountering an all too familiar problem: she was told to go back on the pill. “I tried to explain what had happened,” she said. “I told them it doesn’t work for me - I was near suicidal. But all they said was ‘it could be an option’, when very clearly it wasn’t.”

From there onwards, Olivia found herself having to fight and fight to be taken seriously. She kept pressing her GP on why her periods were so awful - asking for tests. But all she was told was, ‘go back on the pill’. “They weren’t hearing me, no matter how hard I tried.”

After two years of trying, Olivia got referred to a specialist who at last diagnosed her with endometriosis. “It was good to have answers,” she said, “but I know that I wouldn’t have gotten them if I hadn’t kept pushing.”

She continued: “I can be bolshy, and that’s fine, but not everyone is comfortable being that way. The onus shouldn’t be on the patient. So I can’t help but feel frustrated and angry about my experience.”

Denise also feels emotional when looking back at what she went through - particularly in relation to how she was “dismissed” by professionals. “This isn’t the only bad experience I’ve had, too,” she admitted. “Once, after giving birth, I told a nurse I wasn’t comfortable having sex with my husband. She told me it was all in my head.”

Denise believes that her being a woman played a role in how she was treated - and that her race “compounded” this experience. She explained: “I want to think we’ve moved past all of that, but I do feel it was the case.

“It’s a difficult subject, but we do have to realise that doctors are people too. They can make mistakes, they can miss things, and they can also have biases.”

Olivia felt confusion about her treatment too. She said: “It got to the point where I couldn’t even tell what was happening anymore. I was like, am I not being listened to by doctors, or do they just not know the answers - because the research into women’s health and conditions isn’t there?”

‘Women’s healthcare needs have been marginalised’

The latter of these thoughts is an issue which Dr Hana Patel, an NHS GP and GP Expert Witness, told NationalWorld there is “evidence behind” it.

She explained: “The UK healthcare system has been designed around the needs of just half the population. Men have historically been treated as the default patient in clinical practice and medical research, and women’s healthcare needs have been marginalised.”

Dr Patel added that although the issue is global - and women in the most disadvantaged countries tend to be the most affected - it is a “matter of national shame that the UK has the widest gender health gap in the G20.”

She explained: “Women fare more poorly compared with men in relation to disease prevalence, access to healthcare, and outcomes after treatment. Examples include the fact that women are less likely than men to have a heart attack correctly diagnosed, and are more likely to experience poor mental health.”

A spokesperson for the Department of Health and Social Care said: “Since we launched our Women’s Health Strategy last year, over 300,000 more women have accessed cheaper HRT, new women’s health hubs are opening up across the country, and we have added a dedicated women’s health area to the NHS website.

“We will keep working and investing so girls and women across the country can benefit from the world-class healthcare they deserve.”

The spokesperson added that since April 2022, the government has invested £53 million into the National Institute for Health and Care Research (NIHR) programmes to support women’s health.