Endometriosis Workplace Support

Debate between Alec Shelbrooke and Hannah Bardell

Tuesday 29th October 2019 Westminster Hall

[Alec Shelbrooke]

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.”

Another story comes from a woman who said:

“I was diagnosed when I was 25 when I had a miscarriage. I had been struggling since I was a teenager with all the common signs of endometriosis. It just wasn’t picked up until I had my first surgery. What I hate most about endometriosis is that it takes time away from my children. Especially when I have to just go and rest in bed. I would love to be able to make it more aware for children, especially young girls and in schools, to be able to support them through this and see the early signs and educate GPs on the signs and symptoms.”

[Hannah Bardell (Livingston) (SNP)]

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?

[Alec Shelbrooke]

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.

This disease has had a huge impact on my mental health. Alongside other personal family issues, the daily pain I have been going through has made tackling day to day life harder. Whilst I have had friends and family support me, I have also lost friends because they don’t understand this disease. I have tried to take my life multiple times because of it. The problems have also extended to my fertility. I have had miscarriages and a medically advised abortion. Not only was this a devastating and horrific experience for me but had a dramatic impact on my work life as well as personal.”

Another lady said to me:

“As soon as my periods started when I was just 12 years old, the problems began. I suffered extreme pain and heavy bleeding, to the point where I passed out several times. On speaking to my GP, I was told ‘every girl has this, it’s normal’. The doctor prescribed me oral morphine for the pain, but most of the time it barely touched it. Finally, I was offered a laparoscopy in February 2016. The surgeon told me I had endometriosis, but that they had treated it and I wouldn’t have any further problems. I was so happy and relieved, little did I know the fight was far from over. By October the symptoms had returned. On speaking to my doctor, I was told it couldn’t have come back after surgery, it was part of being a woman and I simply needed to be more positive. Eventually, I got referred to an endometriosis specialist hospital where an MRI scan showed my left ovary and bowel were stuck to my cervix and I had 100% got endometriosis back. This means more surgery.”

I am so grateful to the members of the public who engaged with the digital engagement platform. A woman from Newcastle shared her workplace experience. She said:

“I have been disciplined for being off sick. I am terrified to go off sick again, so I have to force myself to work even when the pain makes me vomit. If I go off sick again, I know they will sack me, this has been made very clear. I work for HMRC and I know this is a massive issue for other members of staff as well.”

Another lady said:

“I have been fired from all my jobs, my last workplace bullied me and mocked my illness, nothing was done via HR and I was made to leave instead. I have never had support from any workplace.”