Baroness Newlove: ‘Late Diagnosis Of Endometriosis Meant I Needed Hysterectomy At 36’

Endometriosis is a horrifically painful, often misdiagnosed ‘invisible’ illness.

It can take multiple tests over a number of years to understand what’s actually going on inside – and many women only find out whilst being tested for other things. You have to deal with doctors telling you it’s ‘just’ period pains, to take painkillers and to use a hot water bottle. Some people think you’re simply moaning, that it’s normal to feel menstrual pain, and you should just suck it up and get on with it.

And for endometriosis sufferers like myself, the frustration that comes with constantly being told that you should ’suck it up’ comes with a hefty toll on your mental health too.

And despite having a relatively severe case of endometriosis (in the end I had to have a hysterectomy at 36) I’m one of the lucky ones. I finally found a great gynaecology consultant that recognised my symptoms straight away. He decided that I needed to be admitted for an operation that very same day to a remove an ovarian cyst that was the size of a golf ball. It was at this point I found out that I had endometriosis.

I had never heard of it before – when I was diagnosed in 1985 issues concerning menstrual wellbeing were not widely understood or discussed. My first reaction was fear - hearing about the tremendous pain and damage it can cause, but after suffering in the dark for so long I also felt relieved. Mainly because I had found a specialist who actually believed me, and confirmed that the debilitating pain I felt was real.

READ MORE: Endometriosis? It’s Just 'Women’s Problems', Right?

Unfortunately, as my case had gone undiagnosed for many years, the cyst had wrapped itself around my fallopian tube, meaning the consultant had no choice but to remove both. This was a double blow as endometriosis already lowers your fertility, and I had even less chance of conceiving now that I was left with only one ovary and one tube. After much difficulty I was able to have children before my hysterectomy (due to the unbearable pain), but as the average age of first-time mothers creeps up in the UK, receiving a diagnosis like this can be devastating and life changing.

Part of the problem with endometriosis is that it is not a one size fits all illness – symptoms can vary from person to person, which only adds to the general confusion and misconceptions around it. I suffered mostly in the middle of my cycle during ovulation, rather than during menstruation. Around this time the pain of sitting down was unbearable and my stomach would swell up so much that I looked pregnant. The irony of my low fertility was not lost on me.

I found myself constantly popping painkillers to try and keep the pain under control, which would make me feel nauseous, and some months I would totally break down when it became too much - I felt alone in my suffering and couldn’t seem to get any answers.

Although endometriosis causes problems inside the body, it can heavily impact your mental health too, rippling through to relationships and lowering self-esteem. It’s an invisible illness because as a society we still don’t fully understand the hidden impact it’s having on sufferers.

Thankfully times have changed a little since my ordeal began. Doctors are more aware of the illness and understand the warning signs, meaning more women are being diagnosed earlier; surgery is less invasive, making complications and internal scarring less likely; and today we talk more openly about menstrual cycles, and what constitutes as a ‘normal’ period.

These open conversations are key to women and girls feeling comfortable in talking about their periods, as there is still too much stigma and prejudice associated with menstruation.

As a woman in the House of Lords, I see these stigmas and prejudices first-hand – from the awkward looks you get when you mention menstrual health, down to the sheer lack of female toilets in the Palace of Westminster.

The government have already put in place measures to tackle some of these issues. The new Heath Education curriculum which became compulsory for pupils in all state-funded schools in England last year, teaches both boys and girls about the menstrual cycle including what an average period looks like, the range of menstrual products available and awareness of emotional and physical health.

This is certainly a step in the right direction, but there is of course, still more to do. An inquiry published by the APPG for endometriosis found that diagnosis had not improved in more than a decade, taking eight years on average. For an illness which affects one in ten women, this timeline needs to be reduced substantially.

To do this, we need to address many elephants in the room. For endometriosis sufferers to have full control of their bodies they need access to clearer advice and support pathways. From seeing the right doctor and getting a quicker diagnosis, to places of work fully understanding that women are not being lazy or wanting a ‘duvet day,’ when they need time off to cope with extreme menstrual pain. In fact, most sufferers just wish that they could just get on with their lives like everybody else.

And for the young women battling with endometriosis right now, struggling with pain or to get a diagnosis, be proud of every little step taken in raising awareness of endometriosis - you are turning your wound into wisdom for others.

For more information and support, visit Endometriosis UK.