Endometriosis and Polycystic Ovary Syndrome

Kirsten Oswald Excerpts

Monday 1st November 2021 Westminster Hall

[Kirsten Oswald (East Renfrewshire) (SNP)]

It is a pleasure to serve under your chairship, Mr Mundell. I am grateful to the hon. Member for Coventry North West (Taiwo Owatemi) for leading this important debate so powerfully, and to all the women—so many women—who signed the petition, including the 241 in my constituency of East Renfrewshire.

Endometriosis and polycystic ovary syndrome affect so many women, yet we hear so little about these conditions day to day, so this debate is really important, because it allows us to focus on areas such as research, where I will be seeking assurances from the Minister. It is really important, too, that this afternoon we are shining a light on these conditions and helping a bit by letting people know about the reality and the challenges of daily life for women who are affected.

I will not speak a great deal about endometriosis today, not because it is not important—it absolutely is—but because colleagues from across the Chamber have spoken so knowledgeably and eloquently. But I would first like to echo what others have said about Sir David Amess and the huge contribution he made. And I would like to reflect on a few things that we have heard that bear further examination.

My hon. Friend the Member for Livingston (Hannah Bardell) spoke so eloquently about the support of women campaigners. I really take my hat off to women like that. They are amazing people. The hon. Member for Rutherglen and Hamilton West (Margaret Ferrier) noted the importance of recognising the mental health impact of both these conditions. And we have heard from hon. Members across the Chamber about the impact on people’s working lives. But I think the hon. Member for Streatham (Bell Ribeiro-Addy) spoke most powerfully. She spoke so well about her own experience—a really hard experience—as a woman with endometriosis. I hope that the Minister is able to reflect on that in the context of her response and the need for research.

I want to concentrate today on PCOS. I have been contacted by several constituents who have PCOS, and I have PCOS myself. Like many women with PCOS, I have not really spoken it a great deal—and to be perfectly honest, I had not intended to speak about it in the context of my work. It is a personal thing, but I decided that I would speak today because the silence around this condition really has to change. So many women are affected by PCOS, but so little is said about it, written about it and, frankly, known about it. We really need to shine a light on this condition and to push for far greater understanding and a far greater commitment to the research that can make a difference.

I was diagnosed with PCOS about 20 years ago, but to be honest, even though I initially spent quite a lot of time trying to research it myself, that was difficult, because much of the information that women would want to find and anticipate being able to find does not actually exist, because of the glaring lack of research. Like so many other women with PCOS, I have been in the dark most of the time, just because there is not enough understanding out there of this condition, which has certainly impacted on my day-to-day life.

I see that the Royal College of Obstetricians and Gynaecologists has helpfully put this in a nutshell for us all. It has established that less than 3% of the overall medical research funding in the UK is focused on women-specific diseases, such as endometriosis and PCOS. They are holding back women’s health outcomes and experiences and holding back our lives, yet that is the kind of priority—less than 3% for women-specific diseases—that these conditions are given. I reflect again on what the hon. Member for Streatham described.

I am pleased that the new Scottish Government have in their first 100 days published a new women’s health plan that includes several actions to improve access to appropriate support, speedy diagnosis and the best treatment for endometriosis. That is practical progress, and I hope it will have a knock-on effect for PCOS. That kind of practical action is really important and will make a difference to people’s daily lives, but we are working with one hand tied behind our backs if we do not focus on the dearth of research on, and lack of conversation around, both these conditions.

That is one call from Verity, the national PCOS charity, which does a fantastic job despite being volunteer-run. Those volunteers deserve our grateful thanks for their work and focus. We might want to take a wee minute to wonder why this condition, which affects up to 10% of women, has to rely on volunteers, however professional, influential and brilliant they are—they are all that. That is not illustrative of a collective appreciation of the harm PCOS causes daily to women throughout their lives.

The fact is that, like endometriosis, the cause of PCOS is unknown, and there is no cure. That can be quite devastating to hear, because as we have heard, some of the symptoms can have a significant impact on daily life—on what we would call normal life—and in a variety of ways. Bear in mind that some women will experience multiple issues once, including irregular periods, or a complete lack of periods. Again, that is not a topic I ever thought I would touch on at my work.

[Hannah Bardell]

Does my hon. Friend agree that her speech and that of the hon. Member for Streatham (Bell Ribeiro-Addy) show the very reason why diversity in our Parliament, including women who will come forward and be so brave as to share their personal experiences, is absolutely crucial?

[Kirsten Oswald]

My hon. Friend is right: we have to listen to women’s experiences, and I think the hon. Member for Bury South (Christian Wakeford) referenced that too. That really matters here. I never imagined talking about my experience of menstrual irregularity, ranging from nothing at all to a full, continuous six months of periods, which was both debilitating and, frankly, somewhat concerning.

It is fair to say that these are the kind of challenges that women would really rather do without. We heard about the irregular nature of fertility, including irregular ovulation, or no ovulation, which is an issue for women with PCOS, who of course probably do not know that until they find out that they are not pregnant when they are trying to be; reduced fertility—difficulty becoming pregnant—can be the reason why many women become aware that they have PCOS. That was certainly my experience, and it explained many other things. I may have a wee glimmer of light in what is possibly a quite depressing contribution: I have two amazing sons thanks to just a wee bit of PCOS-related medical assistance.

I can tell hon. Members, as we heard so eloquently from others, that women with PCOS can have a difficult time in many ways, particularly with issues such as hirsutism—unwanted facial or bodily hair. I cannot emphasise strongly enough how women are influenced by this. Again, there is no solution. Imagine the impact on the self-esteem of young women in particular. However, PCOS does not only affect young women, and young women are not alone in facing a severe impact on their life from these kinds of issues. None of us wants to sprout a beard, feel unable to go swimming or have to cover up from head to toe. Noting symptoms as oily skin and acne do not really cover the magnitude of those either.

PCOS is often assumed to related only to fertility, and that is a big issue, but all these other issues affect how the world sees us and how we present ourselves to the world. Thinning hair—male pattern baldness, basically —2014 is crushing to have to deal with. Being overweight is so common among PCOS-affected women because our bodies metabolise differently. For some women, that has a significant impact on both their health and on how they interact with the world. There are also depressions and mood changes. If I went through everything, we would be here all day. So many things have a connection to PCOS but, again, we cannot say exactly what or why because the research is not there.

As a younger woman with no idea of where to go for support, it was heartening to hear of women, such as the hon. Member for Streatham, speak about communities supporting one another. That is really helpful when diagnosis is not straightforward or where the issues are not resolvable, but we need to do better than that DIY approach. For young women and teenagers, it is rubbish in the age of Instagram to have to deal with unexplained weight gain or hair growing where it should not, and worries about the future. As for menopause, I have no idea what it will mean, but I would certainly like to know. When I looked into aging women, the best I could establish is that it is thought to be a medical black hole. That is simply not good enough, and that is why research is needed.

To conclude, I thank all the women who have been in touch with me about this matter—so many of them. I thank Verity PCOS and my constituent Anji Sandhu, who is in the process of setting up a group to raise awareness of PCOS and its challenges so that we can talk about it more. That will help because so many women are affected and rely on us here to take it seriously. At the moment it feels to them like a big, dirty secret, and that is what needs to stop. That is why we need research, and I hope that the Minister has something positive to say on that.

[David Mundell (in the Chair)]

Before I call the shadow Minister, Alex Norris, I will say that I am sure he and the Minister will want to help me allow the hon. Member for Coventry North West a couple of minutes to wind up at the end of the debate.