Published3 days agoShareclose panelShare pageCopy linkAbout sharingBy Naga Munchetty5 Live presenter”What’s wrong with me?” It’s a question we’ve all asked at some point. We know when something isn’t normal – we want to know why, and what can be done to make things better.For millions of women around the world who experience menstrual pain and heavy periods, it’s a question that can take years to answer. And in many cases the only thing that can be done to make things better is drastic: a full hysterectomy.On average, it takes around eight years to be diagnosed with endometriosis, a condition that sees tissue similar to the lining of the womb growing outside the uterus. That’s eight years of severe pain for many women.For adenomyosis, a similar condition in which the tissue grows inside the muscular wall of the uterus, it can take even longer. In my case, it took 32 years. More than three decades of pain so severe that I sometimes couldn’t sleep at all. Thirty-two years of, at times, incredibly heavy bleeding that would last for weeks; 32 years in which doctor after doctor struggled to work out what was wrong me and – in some cases – even told me there was nothing wrong at all.And I’m not alone. When I first spoke about my diagnosis on my BBC Radio 5 Live programme, I was overwhelmed by the stories I heard from women who had gone through something similar. They are stories that I’ve been hearing ever since. Stories of women in crippling pain for decades. Naga reveals womb disorder makes her scream in painNaga Munchetty told to suck it up by NHS doctorsSukhi, who spoke to me on air after texting the programme, told me she waited 20 years to be told she had endometriosis: “I was flooding. I couldn’t leave the house. I was having to use incontinence nappies just to get to work and back.”So why, given that 51% of us are women, isn’t it easier to find out what’s wrong with us? Why does diagnosis take so long, and frequently become a battle with medical professionals? Why don’t we have simple tests for a condition that’s thought to affect one in 10 women? And will we ever find an effective treatment short of a full hysterectomy?Those are the questions I took to Edinburgh this week, with my BBC Radio 5 Live programme, to meet some of the researchers and scientists trying to find answers.’Passing out every month’The Centre for Reproductive Health at the University of Edinburgh is one of the few places in the UK where conditions like adenomyosis are being actively investigated by researchers. Dr Kate Walker is one of the research assistants at the lab and when I meet her, she’s examining bottles of period blood provided by women. She is looking at why some women experience far heavier periods than others, and what that can tell us about their underlying conditions. “On average, blood loss in a period would be 30-40ml,” she tells me. One of the bottles she’s looking at contains 400ml. “This is more blood than you would be allowed to donate in three months, and this woman is losing this amount every month.”Jen Moore, 34, came with me to the lab in Edinburgh to see for herself what the scientists are working on. Her adenomyosis symptoms only stopped earlier this year when she underwent a full hysterectomy.”I was passing out every month and just thinking it was normal, and just telling myself ‘why can’t I deal with this like everybody else?'”It’s an issue that means a lot to Dr Walker, because it’s something she’s experienced herself. So did her mother. And so does her 12-year-old daughter.”Heavy periods affect one in three women at some point in their life. You would assume that we would talk about it more – that there would be more awareness and more funding for something that is very obviously an unmet clinical need.”Dr Walker’s work relies on funding, but that’s not straightforward. There are grants from charities, from pharmaceutical companies, and – in the UK – from two separate bodies, each funded by a different government department. Scientists, politicians and campaigners have all told me that they think research into conditions that specifically affect women has been, and still is, systemically underfunded.According to the most recent figures available, just 2.1% of public spending on medical research is dedicated to women’s reproductive health and childbirth.The Department for Health and Social Care says it has invested £53m into researching “women’s health issues” and will launch a dedicated policy research unit focusing on reproductive health in January.The funding challengeDr Jackie Maybin, a consultant gynaecologist at the centre in Edinburgh, says getting funding for medical research is difficult.”You need quite a lot of preliminary data to show that the investment of a million pounds is going to have something come out of it at the end of it. And what we sometimes struggle with in women’s health is that to generate those smaller grants and smaller amounts of data, there are fewer avenues to go down. “We see people coming in needing a blood transfusion because of their periods and to me we should never be getting to that stage. That is unacceptable.”Ring-fencing – specifically setting aside research funds for conditions like these – is an idea that comes up time and again in the conversations I have around this issue. Caroline Nokes. the Conservative MP who chairs the Women and Equalities Committee, which is currently looking into women’s reproductive health, agrees: “Recognise the scale of the problem and make sure that this becomes a priority and it’s not simply driven by the same old voices. “We know that when you shut women out of the decision-making process then you get bad decisions, that the things that impact women get overlooked.”The government-funded Medical Research Council, which focuses on high-impact research, tells me that they “receive relatively low numbers of applications to understand specific conditions that affect women, such as adenomyosis and endometriosis, even though they have an above-average success rate in securing funding”.So what’s going on? Dr Maybin tells me there are issues with attracting people to the specialism.Obstetrics and gynaecology, she says, is a particularly demanding specialism that requires researchers to keep up their clinical skills on a regular basis. She says it’s like “having two full-time jobs”.Asking simple questionsDame Lesley Regan, professor of obstetrics and gynaecology, and the government’s first ever Women’s Health Ambassador for England, says effecting change can be as simple as encouraging more conversations about what is, and isn’t “normal” about periods.”Most of us have 12 of them a year for nearly 40 years. So the fact that some girls or women can’t go to school or can’t go to work because they’re frightened of flooding or they’re in terrible pain is not acceptable, and we actually have to change this and we have to focus on asking all girls and women ‘how are your periods’?”One simple question. Could it really be that simple? But what about the potential for a diagnostic tool that could end the decades of pain for so many women, and give them an answer to the question: “What’s wrong with me?”Dr Marianne Watters is looking into whether menstrual blood itself can be used to diagnose adenomyosis or fibroids. She says that would allow the conditions to be picked up far, far earlier than they are at the moment.Dr Ishita Mishra is using AI and machine learning to help spot signs of adenomyosis.Dr Varsha Jain is looking at MRI scans. She says a change as simple as using colour scans instead of black and white, can make it far easier to see so-called adenomyosis “hot spots”. “This ability is available on every single MRI scanner in the country,” she says. “We need further funding to take this forward.”So there is hope. There are people out there working to make things better for women like Jen. Like Sukhi. Like me.But Dr Maybin says that optimism has to be tempered by the realities of medical research – some of the work is quite exploratory. It takes time, often years.”Often we can fail and have to start again. This is difficult work that we’re doing.”Jen is impressed. When I first spoke to her, before her hysterectomy, she told me that she lived every day with the feeling that she had a bowling ball inside her. It took her more than two decades to convince doctors that what she was experiencing wasn’t normal. “Being in this lab is so inspirational, so reassuring” she tells me. “All I can think of is ‘this is not what the patient experience is – this is not what millions of people around the world have’.”And she’s right. The real question is whether there’s the will from research scientists, from funding bodies, from healthcare professionals and from those in government with the power to change priorities, to take what’s happening here and turn it into effective treatments that will make a difference to the lives of so many people.We’re waiting.More on this storyNaga reveals womb disorder makes her scream in painPublished22 MayNaga Munchetty told to suck it up by NHS doctorsPublished18 OctoberAdenomyosis: ‘Period pain so bad it made me sick’Published14 December 2021Around the BBCBBC Radio 5 Live – Naga Munchetty