Endometriosis Workplace Support

Debate between Alec Shelbrooke and Gill Furniss

Tuesday 29th October 2019 Westminster Hall

[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.”

[Gill Furniss (Sheffield, Brightside and Hillsborough) (Lab)]

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.

[Alec Shelbrooke]

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”.