Endometriosis and Polycystic Ovary Syndrome

Taiwo Owatemi Excerpts

Monday 1st November 2021 Westminster Hall

[Taiwo Owatemi (Coventry North West) (Lab)]

I beg to move,

That this House has considered e-petition 328570, relating to research into endometriosis and polycystic ovary syndrome.

It is a pleasure to serve under your chairmanship, Mr Mundell. Before I begin, I would like to take a moment to remember and pay tribute to our friend and colleague, Sir David Amess. Among the many worthy campaigns he fought for, Sir David was a vocal champion of women suffering from endometriosis. He launched the all-party parliamentary group on endometriosis in 2018, and he chaired it with the intention of raising awareness of the condition and the need to investigate how those who suffer from endometriosis can get support. I am certain that Sir David, ever the advocate, would have spoken in this debate. By continuing to speak out on this issue, we honour his memory.

For convenience, I will read the petition into Hansard:

“Endometriosis and PCOS are two gynaecological conditions which both affect 10% of women worldwide, but both are, in terms of research and funding, incredibly under prioritised. This petition is calling for more funding, to enable for new, extensive and thorough research into female health issues.”

The petition was open for six months and gained over 100,000 signatures, 200 of which were from my own wonderful constituency of Coventry North West. This is not the first time we have had a debate on endometriosis, nor is it the first time that polycystic ovary syndrome, or PCOS, has been brought up in Parliament. The Government’s lack of action in response to previous debates has compelled over 100,000 people to bring the lack of funding for research into these diseases to our attention.

The opening speaker in a debate does not have to speak in favour of or in opposition to a petition. They can choose to outline arguments dispassionately and open up the debate. I will not be doing that. I want to throw my full support behind this important issue. As a healthcare professional in the NHS myself, who has worked with endometriosis and PCOS patients, it is heartbreaking that we still need to plead for research money for two diseases that affect one in 10 women in the United Kingdom. That is over 3 million women.

To advocate for the petition, I will first try to clear up some crucial misconceptions about both diseases. I will also outline the specific actions that the Government must take to support women who suffer from them. Before I do that, I want to briefly explain what endometriosis and PCOS are. PCOS is the most common endocrine disorder in women, affecting one in 10, although it disproportionately impacts black and south Asian women. It is characterised by abnormal hormone production in the ovaries and can, in many but not all cases, cause women to develop cysts. Endometriosis is a condition where cells similar to those in the lining of the uterus are found elsewhere in the body. It affects one in 10 women, although, again, it disproportionately impacts black and south Asian women. Medical jargon aside, both diseases can affect women’s reproductive organs and can, if severe enough, cause fertility issues as one of many side effects.

However, after spending the last few weeks speaking with women suffering from one or both diseases, it has become clear that one of the greatest misconceptions surrounding endometriosis and PCOS is that they are often considered only to be fertility diseases. Thinking of the diseases primarily as barriers to pregnancy or simply as making women’s periods more painful is a gross oversimplification and is, in many cases, totally inaccurate. Both diseases vary widely in severity and in the way they manifest. For example, 12% of endometriosis cases target women’s lungs. Both conditions cause symptoms other than chronic pain. PCOS can cause obesity, excess facial hair and chronic acne—deeply stigmatising symptoms that can shatter a young woman’s confidence and have a debilitating effect on her mental health.

[Christian Wakeford (Bury South) (Con)]

Does the hon. Lady agree that this medical gaslighting is arguably the biggest issue? Patients go to their GP—the medical practitioner they trust the most—and are told it is just a bad period. That is what we really need to change. Funding is a separate argument. That is the main problem we need to overcome before we can truly tackle the issues.

[Taiwo Owatemi]

I thank the hon. Gentleman for making an important point, but I think what that highlights is the need to ensure that endometriosis and PCOS are included on the medical curriculum for GPs and healthcare professionals. That is why funding is so important: to make that difference.

[Rachael Maskell (York Central) (Lab/Co-op)]

I rise to support the petition as well. My constituents have also written heartfelt letters about their experiences; it took one constituent 11 years to receive a diagnosis. Is not the crux of the issue that we need a diagnostic framework to get on top of the conditions quickly so that they do not reach the severity that many women experience?

[Taiwo Owatemi]

I thank my hon. Friend for making that important point. I agree, and I will come on to that issue in my speech.

To add insult to injury, funding for symptoms such as excess facial hair and chronic acne has decreased over the years. Endometriosis can cause chronic bowel and bladder-related symptoms and depression, yet I have heard from countless women that, after finally being diagnosed with endometriosis or PCOS, they are told by their GP to come back when they want to get pregnant and are then sent on their way, without targeted treatments.

It is extraordinary to think that there are the same number of women in the UK who have endometriosis as there are people diagnosed with type 2 diabetes. Nobody would suggest that a person suffering from diabetes come back when they decide to get married, so that they can manage swelling in their fingers before buying a wedding ring—that would be absurd. One in 10 people in the UK suffers from asthma, yet it would be completely unthinkable to tell someone with asthma to come back when they decide they want to run a marathon. Endometriosis and PCOS are about so much more than having difficulty conceiving.

[Margaret Ferrier (Rutherglen and Hamilton West) (Ind)]

Both endometriosis and PCOS can have a massive impact on mental health for a variety of reasons, whether related to pain or fertility. Mental health services have been chronically underfunded for years. Does the hon. Lady agree that the psychological symptoms of the conditions should be prioritised as much as the physical ones?

[Taiwo Owatemi]

I thank the hon. Lady for raising an important point. We absolutely need funding for holistic care for both endometriosis and PCOS, especially for mental health support.

[Jackie Doyle-Price (Thurrock) (Con)]

The hon. Lady is articulating the case extremely well. Does she share my opinion that one reason the conditions are looked at only from the perspective of their impact on fertility is that the medical establishment too often views women’s biology purely from the perspective of incubating babies, and does not think enough about the impact on general wellbeing?

[Taiwo Owatemi]

I thank the hon. Member for raising such an important point, which I will come to later. I know from speaking to many healthcare professionals that some are passionate about endometriosis and PCOS but would like more funding and support, so that their colleagues and all within the medical profession get the necessary medical education in their curriculum.

Endometriosis and PCOS are about so much more than having difficulty conceiving, but funding decisions made by Whitehall treat them as though they are not. That is why it is so upsetting, but unsurprising, that the Government response to the petition discussed funding for fertility treatments. In fact, when most young women start to see symptoms at puberty, pregnancy is the furthest thing from their mind.

With that in mind, I will talk about a constituent of mine, a 14-year-old girl who was ostracised and relentlessly bullied by her peers for her excessive facial hair and acne and for weight-related reasons. She experienced such debilitating pain in her lungs and lower abdomen that she was hospitalised during a GCSE exam. After five years of calling hospitals, three painful exploratory surgeries, countless GP appointments and several specialist referrals, she was finally diagnosed with endometriosis and PCOS. The only treatment her GP could offer her was generic birth control pills, which no evidence-based studies confirm as definitive treatment for either disease.

[Christine Jardine (Edinburgh West) (LD)]

The hon. Lady makes an excellent point. I have experience of young women being given contraceptive pills to deal with what the GP regards as period pain, only to then suffer mental health impacts because of the contraceptive pill. They then find themselves in the difficult position of having to choose between what the GP thinks is a treatment for period pain and the impact of the contraceptive pill on their mental health. Does she agree that that is simply unacceptable?

[Taiwo Owatemi]

I thank the hon. Member for raising that important point. I agree that it is simply unacceptable.

Before my constituent left, the GP told her to come back when she wanted to get pregnant, leaving her to figure out how to cope on her own in the meantime. Her story of feeling shamed by her peers and gaslit when trying to get a diagnosis is not unique, as many Members have raised. On average, it takes eight years to diagnose a woman with endometriosis, and years to diagnose PCOS, which brings me to my next point.

The Government need to increase funding to study both conditions. We still do not know what causes endometriosis, effective ways of preventing it from spreading to other organs or effective non-surgical ways of managing symptoms. Some 58% of women with endometriosis had to visit a GP more than 10 times to get a diagnosis, while 21% had 10 or more hospital appointments and 53% went to A&E, with 27% going more than three times, before diagnosis. That is deeply distressing for the patient and a terrible use of NHS resources.

[Munira Wilson (Twickenham) (LD)]

The hon. Lady makes an excellent case and I absolutely support everything she says. I was horrified to hear from a constituent, a qualified nurse, whom it took six years diagnose to diagnose. After two and a half years of daily bleeding and pain, she was finally offered laparoscopic surgery, but was then told by healthcare professionals that the only cure for her was to actually conceive and have a baby, while at the same time being told that she could have fertility problems. Does that not highlight that there needs to be a lot more awareness and education among GPs and healthcare professionals, and adherence to National Institute for Health and Care Excellence guidelines?

--- Later in debate ---

[Taiwo Owatemi]

I thank the hon. Member for raising that important point, which absolutely highlights that need.

The Government urgently need to invest in research projects and create more streamlined diagnostic practice. That must start with better GP training, as hon. Members have highlighted, so that GPs no longer inadvertently gaslight or misdiagnose anyone with endometriosis or PCOS. It must extend to more accurate and less invasive screening technology to confirm the diagnosis. Once women are finally diagnosed, there is currently no targeted treatment for endometriosis—none at all. Similarly, there is no drug or treatment on the UK market that has evidence-based approval to treat PCOS. We need funding for this research, as well as facilities to carry it out.

There is only one dedicated PCOS clinic in the whole of the UK, and I am proud to say that the clinic is in my own city of Coventry. I visited the clinic recently and spoke with the head researcher, Professor Harpal Randeva, and their specialist nurse, Danielle Bate. They stressed the importance of treating PCOS as a disease in need of its own funding body. Currently, the limited funding for PCOS and endometriosis alike is attached to funding bundles for several other diseases, as is clear from the Government’s response to the petition. We should not be attaching research funding for these conditions as addendums to general funds for fertility diseases or other endocrine diseases. Endometriosis and PCOS impact millions of women in the UK. They are not afterthoughts, and we cannot continue to treat them as such in funding discourse. We should encourage funding charities to set up independent boards for PCOS and endometriosis.

Earlier this year, a Department of Health and Social Care consultation acknowledged the importance of improving research into women’s health. The strategy for that improvement is, according to the Government, now in development, and it would be great to hear from the Minister what progress is being made. I also ask the Minister whether the strategy will commit to establishing independent well-supported funding bodies for research into both endometriosis and PCOS, which are so desperately and deservingly needed.

I will end my remarks by thanking all the brave women suffering from endometriosis or PCOS who continue to fight for increased resources. Without their remarkable self-advocacy and will to advocate for each other, I am certain that we would not be here today. I hope the debate will provide an opportunity for the Government to listen and act.

[David Mundell (in the Chair)]

As a lot of Members want to speak, I ask Members to stick to about three and a half minutes so that everybody who wants to speak gets the opportunity to do so. I call Emma Hardy, and then Jackie Doyle-Price.

--- Later in debate ---

[Taiwo Owatemi]

I thank all hon. Members who have spoken so passionately in this important debate. I look forward to hearing from the Government about their strategy to make funding for endometriosis and PCOS more readily available, and about how their strategy to improve research on women’s health will establish well-supported and dedicated funding bodies for both endometriosis and PCOS research.

I will highlight some of the many important remarks made during the debate. My hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy) underlined the fact that we do not know what causes endometriosis and that we need dedicated funding to determine the cause of the condition. I completely agree with the hon. Member for Thurrock (Jackie Doyle-Price) on the crucial point about the need to destigmatise and demystify many of the symptoms associated with endometriosis and PCOS.

Finally, I thank my hon. Friends the Members for Streatham (Bell Ribeiro-Addy) and for Worsley and Eccles South (Barbara Keeley), as well as the hon. Member for East Renfrewshire (Kirsten Oswald), for their powerful stories, which illustrated better than statistics or figures ever could the need to support women who suffer from these conditions. Simply put, we need more funding for research into endometriosis and PCOS so that we can combat both. I thank every Member who participated in the debate.

[David Mundell (in the Chair)]

Although I am sure that Mr Norris was correct in saying that Sir David would have been pleased with the terms of the debate, as the Minister said, I am sure that Sir David would also have been holding her feet to the fire afterwards.

Question put and agreed to.

Resolved,

That this House has considered e-petition 328570, relating to research into endometriosis and polycystic ovary syndrome.