Endometriosis Workplace Support

[Mark Pritchard in the Chair]

I beg to move,

That this House has considered endometriosis workplace support.

It is a pleasure to serve under your chairmanship, Mr Pritchard. This issue affects not just the Minister’s Department, but the Department of Health and Social Care, the Department of Business, Energy and Industrial Strategy, the Department for Education and the Department for Work and Pensions.

I thank Dr Larisa Corda, who is an obstetrician, gynaecologist and fertility expert—she is in the Public Gallery—the many hundreds of women who have contacted me, and the very brave women who have made the journey to London today to support this debate. I will not reveal the names of the people who have written to me even if they are happy for me to do so, because I want to maintain their confidentiality and ensure that it remains their choice. In opening the debate, I will cover the following areas: the disease itself; the poor diagnosis and medical expertise in dealing with this debilitating condition; its impact on women’s lives; its impact on workplace activity; and the protections that many women feel are not honoured, despite strong workplace health assessment laws.

The disease is often described as cells from the womb growing in other places, but that is a gross underestimation. I believe that that simplistic description is among the reasons why women find it hard to get employers to understand the terrible condition that they are suffering from. According to Dr Corda, since the start of this year more than 100 women have taken their lives as a direct result of this disease.

Endometriosis comes with many symptoms, which occur not just at the time of a woman’s period. The most common are abdominal cramps, back pain, severe menstrual cramps, abnormal or heavy bleeding, painful bowel movements, pain urinating, painful sex, difficulty becoming pregnant, and nausea or sickness. According to endometriosis.org, people with endometriosis are more at risk of several diseases. The risk of ovarian cancer is 37% higher than for the general public; the risk of endocrine tumours is 38% higher than for the general public; the risk of kidney cancer is 26% higher than for the general public; the risk of thyroid cancer is 33% higher than for the general public; the risk of brain tumours is 27% higher than for the general public; the risk of malignant melanoma is 23% higher than for the general public; and, according to cardiosmart.org, a heart attack is 62% more likely. That series of statistics does not describe the impact of the symptoms; I will give some real-life examples later, but the stark truth is that 30% to 50% of women become infertile from the disease.

I congratulate my right hon. Friend on securing this incredibly important debate. I am sure millions of women around the country will be enormously grateful that he is raising this issue at the highest level. Does he agree that one of the challenges that many people face is that there is a significant lack of understanding of the condition? That leads to all sorts of things, including dreadful delays in diagnosis and a lack of understanding in workplaces of what the chronic pain really means to those women.

My hon. Friend summarises the biggest issues that those women face. I will talk about the real-life experiences of the women who have contacted me, but one of the most important things—I hope other Members will expand on this—is that there are support networks out there, because women often suffer in silence. As I said, this subject goes beyond the DWP: certainly, the Department for Education and the Department of Health and Social Care have a role to play.

In June 2015, the BBC carried out a study on 15,000 women in Scotland. It found that women with the condition had a 76% chance of miscarriage, which is unbelievably high. The article reported that women with endometriosis had a trebled risk of ectopic pregnancy. The chance of premature birth was 26% and the chance of having a caesarean was 40%.

Later, I will talk about the impact on women of abnormal and heavy bleeding and bowel movement impacts, which can be distressing in the workplace. I am aware that the issue I am about to talk about falls under the authority of the Department of Health and Social Care, but it is vital to add context and explain why this disease has a knock-on effect in the workplace. I ask the Minister to ensure that this debate is fed into the relevant Ministers in the Department of Health and Social Care.

The House of Commons digital engagement team put out a survey only last Thursday, and there have been 2,610 responses, 1,083 reactions, comments and shares on Facebook, and 215 retweets. I want to cite some of the quotes from it. Again, I will not put the names out there; I will just set out the reports.

“At 18 I am currently being put through medically induced menopause to try and fight back against my endo, it’s horrific, it’s debilitating and it’s exhausting. The pain I have I cannot even describe, and two operations later I am no further to being pain free or living a normal life. My next step is a hysterectomy, I haven’t even had children yet and this is what is being recommended to me. My life has been overtaken by operations, drugs, injections, sickness, anxiety, depression and a whole load of awful nights with no sleep and no rest. I am currently finishing my A Levels and I am absolutely terrified of what life will be like after. My dream is to become a primary school teacher, but I think that dream is unachievable. How will I find an employer who will understand that I often have to lay in bed because as soon as I move I will throw up, or that I have had to have time off work because I’ve got to have my ovaries removed? It’s about time that endometriosis is taken seriously, and people understand that life is so challenging and excruciating, but we carry on, smiling through the pain, simply because we have no alternative.”

I thank the right hon. Gentleman for securing this very important debate. Like the woman whose case he is discussing, I had a chemical menopause at the age of 37, but many women have to go to the GP at least 10 times in order to be referred to a specialist. Does he agree that we should include this issue in statutory sex and relationships education, so that when young girls and women experience gynaecological problems or even heavy periods, which may be a sign of endometriosis, they seek help at the earliest opportunity?

I am most grateful to the hon. Lady, who speaks with a great deal of personal experience. We have been friends for a long time—since we came to this place. We are two West Yorkshire MPs, despite being on different sides of the aisle. I am grateful to her for making those points. As I said, it is important that the Department for Education and the Department of Health and Social Care take this forward. Other Members may wish to try to secure debates that are responded to by those Departments. I know that my hon. Friend the Minister will certainly feed those issues in.

I apologise for citing a lot of stories, Mr Pritchard, but it is important to set out the context. Another lady said:

“I had stage 4 (severe) endometriosis. I had a 7 year wait for diagnosis. From my referral to the hospital, I had a year and a half wait for surgery. My surgery was lifesaving as my bowel was 50% blocked with a mass of adhesions that had grown through the bowel. I was in constant pain, slept for 3 or 4 hours a day and was unable to care for my son properly, I considered putting him into care. If it wasn’t for him, I would have given up on everything. Despite being told in 2010 I ‘probably had endometriosis’ I was still given pain killers and mefenamic acid for years to manage the pain and symptoms. Throughout this time the endo was worsening, it is progressive. Had I been diagnosed earlier I may not have needed the bowel resection I needed and will have bowel issues for life. I was on the pill for 15 years, which is still considered a ‘treatment’. It is not. The same year I came off it (2010) I was at the GP with SEVERE bowel pain during my period (It was fused to my womb). The pill masked the symptoms, but it was quietly progressing. Please ban the use or presentation of the pill as ‘treatment’.”

I congratulate the right hon. Gentleman on securing this incredibly important debate. One in five women will suffer from this disease, and it has been shown that, as that story shows, it can take up to seven years to convince a doctor. That is completely unacceptable. We have an issue in this country with what has been called the gender pain gap. We need to put more money into research and funding to look at proper cures and support for women when they need it most.

I entirely agree with those sentiments. As I said, I hope this debate will go beyond the Department for Work and Pensions. I thank the hon. Lady for that contribution; it is spot on.

Endometriosis affects 1.5 million women in the UK. It takes an average of eight years to diagnose and there is not really a cure.

I will share a few examples from women who have spoken out through the digital platform. One said:

“I have suffered with endometriosis since the age of 15 and I was diagnosed aged 22. The worst thing about endometriosis is the lack of awareness. Even some doctors haven’t even heard of it which is very frustrating! I’ve had 4 surgeries to try to alleviate the symptoms. Unfortunately, this hasn’t worked. I want to try to basically create more awareness of endometriosis, especially online, as much as I can.”

Another woman said:

“I was diagnosed with endometriosis in May 2016. I would say 2 years was spent actively pursuing a diagnosis. But the previous 9 years I often went to the doctors, complained of pain and heavy flow and I was told ‘it’s just a bad period, it’s normal’. The hardest part of endometriosis for me would be the mental health side of things, coming to terms with the fact my body has limits and my life probably isn’t going to take the direction I thought it would.”

Someone else said:

“I was 17 when I was diagnosed with endometriosis. I’ve had 6 surgeries since. The thing I hate most about endometriosis is not being able to plan ahead because you don’t know how your pain is going to be that day. You could be absolutely fine, or you could be crippled.”

A young woman said:

“I was diagnosed with endometriosis on the 14 February last year, I was only 15. It took me 3 years to get diagnosed. For those 3 years, I was told I had unexplainable abdominal pain.”

I thank the right. hon Gentleman for giving way and congratulate him on securing this hugely important debate. Does he agree that local groups, such as Endo Warriors in my constituency, which do such important work to educate young people in schools and to ensure that early signs of endometriosis can be picked up by doctors and health professionals, are absolutely vital and have such an important place in our communities and constituencies?

I am grateful to the hon. Lady, who raises a very important point; there are many support groups out there. I will come to the workplace impact, for which the Minister is responsible, but one of the things that I want this debate to achieve is to highlight to women far and wide that there are lots of support groups in different areas of the country. More importantly, I hope that the debate will be heard by the Department for Education. To strengthen our point, we may have to come back to debate the issue with each separate Department, and we should ensure that we do so.

Another sufferer said to me:

“I have suffered with endometriosis since being 19. I had always had heavy periods and then my symptoms escalated to constant bleeding, pain on intercourse, really bad pain in the lower tummy and lower back. I was backwards and forwards from anywhere between 6 months plus, who constantly checked me for STDs. They’d do swabs, send me on my way and they’d come back clear, and I was in that cycle. I was in work one day when I was given an awareness form for endometriosis. Every symptom listed, I ticked. I’m now 36 and I’ve had 22 laparoscopies. At 29, I had a hysterectomy. When they removed my cervix, they found the endometriosis in there.”

A young woman who has given me a huge amount of help in preparing for this debate told me:

“My journey with endometriosis began when I was 11 years old, when I had my first period. From a young age I was going back and forth to the doctors for leaking through my clothes at school, just after being to the toilet. I have always been active in football and dancing but found myself struggling with the disease due to the pain, lack of energy and continued leaking through my clothes.”

We are talking about an 11-year-old girl. She continued:

“Initially I was told they thought I had endometriosis but was too young for the surgery required for diagnosis. I ended up going through surgery for a womb polyp and ovarian cysts. To date, I have now had 10 surgeries, all with general gynaecologists. Finally, I have been able to see an endometriosis specialist after 10 years of suffering. I had surgery on the 8th of April 2019 which was the diagnostic surgery I had been waiting for. The specialist surgeon found years of missed endometriosis due to untrained surgeons. Unfortunately, a shortage of worldwide endometriosis specialists means this is not uncommon for women suffering.

I thank the right hon. Gentleman for securing this extremely important debate. As a member of the all-party parliamentary group on endometriosis, which is ably chaired by the hon. Member for Southend West (Sir David Amess), I have been privy to many of these stories. Does the right hon. Gentleman agree that a major barrier to support in the workplace is the taboo around menstrual health? Surely, we have to get people talking about that. One idea may be to encourage employers to become endometriosis-friendly, so that people get support and HR departments understand that it is a real illness and not something that someone should have to endure.

I am grateful to the hon. Lady for that important point. That goes back to the earlier example of the lady who suffered for so many years and who got a diagnosis only when she had ticked every single box of a workplace survey. That is why we need a debate with the Department for Business, Energy and Industrial Strategy—we need to work across so many areas of Government. The hon. Lady is right: any issue of women’s health, but especially menstrual health, is still taboo. Someone asked me why I secured this debate. The primary reason is that I have worked very closely on this with a previous constituent of mine, but I also think it important that a man stands here and says that women’s health is not a taboo subject. We are all human beings and we all have health issues. We should all stick together and help everybody, regardless of how embarrassing we might find the subject. There is nothing embarrassing about health and we need to look after people.

The stories that I have given all share the same underlying theme: “I was told by doctors that it was all part of being a woman.” Given the backdrop of the personal trauma that women with endometriosis suffer—years without a diagnosis, personal relationships breaking down and strain on personal finances—they should at least be able to expect the law to protect them in the workplace, like anyone else who suffers with a disability. The truth, however, is that a whole host of employers are completely unsympathetic to the disease, and often dismiss employees because of a “poor sick record”.

My right hon. Friend makes a very good case and highlights the challenges faced by many women with endometriosis. He will recognise that many people have other chronic health conditions, such as inflammatory bowel disease, Crohn’s disease, ulcerative colitis or rheumatoid arthritis, which can also be life-limiting in the ways that he has outlined. For clarity, is he saying that endometriosis is a special case, or do the principles that he is outlining actually apply to many other chronic health conditions, the sufferers of which often find that they are also discriminated against at work?

Of course, all employers should support people in the workplace who have any of the whole host of chronic illnesses that my hon. Friend mentioned, but quite a few of those illnesses get diagnosed relatively easily, or in a shorter time than endometriosis. One of the problems is that there is such a long diagnosis time—I will refer to that later. The hon. Member for Sheffield, Brightside and Hillsborough (Gill Furniss) made a point about better education in the workplace. I absolutely agree with my hon. Friend the Member for Central Suffolk and North Ipswich (Dr Poulter) that this is not about singling out one disease—the whole range of workplace diseases must be covered—but it creates many issues when women cannot even get diagnosed, and cannot tell an employer, “This is what is going on.”

I was given a copy of this text message, which a lady received:

“Hey Karen,

I hope you are doing a bit better, i am sorry to hear you have so much going on physically.

We have had to pause your email access due to confidentiality as you are signed off sick. I am aware you may be off for a few months, so we will end your contact at this point as you are off for a prolonged period of time.

Should you wish to reapply when things work out for you please get in touch through the usual route.

I hope this all makes sense for you, and you can take the time you need to recover and get things back to normal.

Many thanks for all your input, and maybe hear from you again in the future.”

That last sentence perfectly encapsulates an utter lack of understanding and support that is far too commonplace.

I quote from an email I received this morning from the Open University, highlighting the work of PhD student Victoria Williams. She has given the following statistics, based on her doctoral research on the workplace:

One of the challenges that the Minister will face when responding to the debate is that while there are medical guidelines from the Royal College of Obstetricians and Gynaecologists, and I think there are some National Institute for Health and Care Excellence guidelines on how to diagnoses and support women with endometriosis, those guidelines are not particularly well known among all the medical community. I wonder whether more should be done by the Department of Health and Social Care to improve diagnostic rates. If more women had a confirmed diagnosis, it would strengthen this Minister’s hand in taking action in the workplace.

I was just about to say that I need the Minister to work with the Department of Health and Social Care, because without a proper medical sign-off, this situation will keep arising, and by the time a diagnosis is finally made, many women have already seen their life destroyed. The Minister will have heard my hon. Friend’s intervention.

I close with some rhetorical questions. Why is a disease that affects 1.5 million women in this country so unrecognised, and so easily dismissed? Why is there not women’s health education in schools, to help young women through their life journey and illnesses they may be suffering from? Why do we have such poor medical diagnosis? How have we been able to go so long without in-depth training for gynaecological surgeons who can help tackle this disease? Fundamentally, and pertinent to this debate, why, despite decades of work on the protection of employee rights in the workplace, do employers try to not only ignore this disease, but shuffle sufferers out of the door?

More than 1.5 million women in this country have been desperately crying out for far too long. Let today be the day that we stop failing so many women in our society.