Endometriosis and Polycystic Ovary Syndrome

Debate between Barbara Keeley and David Mundell

Monday 1st November 2021 Westminster Hall

[Barbara Keeley (Worsley and Eccles South) (Lab)]

It is a pleasure to speak in the debate with you in the Chair, Mr Mundell. I thank my hon. Friend the Member for Coventry North West (Taiwo Owatemi) for the way she opened this important debate.

Endometriosis and polycystic ovary syndrome affect one in 10 women and those assigned female at birth in the UK. As we have discussed, that means that over 1.5 million individuals are enduring a painful condition that can affect every aspect of their life. It is staggering that these conditions are so under-recognised. Common symptoms for a diagnosis include severe pain and heavy bleeding, but for those who have these conditions, that description barely scratches the surface of the reality of living with such a severe gynaecological disease.

One constituent wrote to me with a powerful testimony about her experience of living with polycystic ovary syndrome. She told me of the wide range of debilitating symptoms of her condition. She felt lacking in confidence and scared for her health and future. She felt that no one understood her, and she felt alone and overwhelmed by the condition. Constituents who have contacted me about endometriosis or PCOS report significant diagnosis times of between four and 14 years. This is an unacceptable amount of time for patients to wait while not getting the right care or even having a name for the condition that is causing their symptoms.

I had endometriosis and it had a big impact on my life. I was not diagnosed until the age of 32. I had multiple surgical interventions over more than 10 years. Surgery, as we have heard from my hon. Friend the Member for Streatham (Bell Ribeiro-Addy), does not cure endometriosis; it just comes back and back. Delays in diagnosing and managing endometriosis and PCOS can affect quality of life. Worse than the impact on quality of life, they result in a dangerous progression of the disease.

We have all touched on the work of the all-party parliamentary group on endometriosis, and I join Members in paying tribute to the work of Sir David Amess as its chair. There was an excellent report produced following an inquiry. I recommend that report and its 34 recommendations to the Minister, particularly those on investment in further research into gynaecological diseases, so that the waiting time for diagnosis can be reduced.

To these recommendations, we must now add the need to address the gynaecology backlog made worse by the pandemic. NHS England data indicate that the waiting list for gynaecology services has seen the largest increase of all the specialties since the pandemic began. Endometriosis UK’s recent survey showed that four fifths of patients with confirmed or suspected endometriosis had had NHS appointments for their condition postponed or cancelled due to the pandemic, and a third had not been given a new appointment date.

Sarah Lambrechts told the Health and Social Care Committee about her experience of having surgery for endometriosis delayed due to the backlog caused by the pandemic. The delay is, in her case, going to be for 18 months to two years. She said:

“I am 25 years old. For the next 18 months or two years—however long—I cannot plan my life. I cannot plan my career progression. I cannot plan to have a family. I cannot take care of myself some days.”

It is very sad that Sarah and thousands of others have experienced such an impact from the disease. We need urgent action so that those who have lived with the debilitating symptoms of endometriosis and PCOS for so long are not suffering because of a long wait for treatment caused by the backlog in NHS care. We owe it to those who have lived with these symptoms, often for many years, as I did, to reduce diagnosis time, improve treatments and, eventually, find a cure.

[David Mundell (in the Chair)]

I now call Alex Davies-Jones, who will not be our last Back-Bench contributor. I did not realise that Gavin Robinson wanted to speak. We will be able to squeeze him in, I think.