“You just need to go home and have a big poo” said the gynaecologist. It was the first time I’d been referred to a specialist for suspected endometriosis. I was 19 years old.
After suffering from painful periods since I started having them, I went to my GP when I was 18 and asked for help. I was told it sounded like endometriosis and that if it was I’d never have kids – you can imagine my shock. I’d never heard of endometriosis and fancy telling me I’d never have kids – it was awful.
I was prescribed the contraceptive pill to help control the pain and irregularity and referred to gynaecology. After waiting months for my appointment, on my first visit I was told I was too young to get it and I should just go home and have a big poo and I was discharged.
The pain didn’t go away with the pill so back to the GP I went, and a further referral to gynaecology followed. This time I was listened to and after an awkward, and painful, examination, I was booked in for a laparoscopy – the first of 5 I would need over the course of the next few years.
So what is endometriosis? It occurs when cells, like the ones in the lining of the womb (endometrium), grow outside of the womb. They build up then break down and bleed. Unlike the womb lining, they have no way to leave the body resulting in pain, inflammation and adhesions.
Endometriosis can attach itself to other organs and physical symptoms can include cramping, back and abdominal pain and fatigue. This can make it difficult to attend work, concentrate on tasks, or even do things we take for granted. I once remember having to pull over when I was driving as the pain was so intense.
Endometriosis UK state that 1.5 million women, and those assigned female at birth, are impacted by Endometriosis, a similar number of those affected by diabetes.
As an employer you can support your employees with endometriosis by allowing open conversations. There is no need to be embarrassed talking about periods, especially painful ones. By showing you are comfortable to talk about it, it will help your employees know they have one less thing to worry about.
As well as the physical symptoms, it can also impact mental wellbeing as the chronic pain may result in stress, anxiety and depression. Personal relationships can break down as it can be very painful to have intercourse and it can lead to fertility problems. So on top of the physical pain, there may be lots more an employee is going through. Employers can offer access to an Employee Assistance Programme (EAP) to allow employees get specialist support.
Endometriosis can have a debilitating impact on day to day life, meaning an employee with endometriosis could be classed as having a disability as defined by the Equality Act 2010. Even where there is no legal obligation to make reasonable adjustments, it can help an employee with endometriosis manage their symptoms if adjustments are offered. These could include reducing hours, the ability to work from home, adjustments to any absence policy trigger points, as it’s likely an employee with endometriosis will have more time off than one without it, and allowing time off for medical appointments without having to use annual leave.
It takes an average of 8 years to be diagnosed from symptoms (Endometriosis UK) and there is currently no cure. Medication can assist to alleviate the physical symptoms but surgery is required to remove it. Even then, it can reoccur.
My own journey proves this. I had my first laparoscopy at 20 years old and I was fine for a couple of years. My periods were still sore, but nowhere near the level of pain I had before the surgery.
Slowly my periods became more and more painful until I went back to my GP again, and got another referral, which led to another laparoscopy. After my 4th laparoscopy I was offered the opportunity to be put through a medically induced menopause. I did a lot of reading on the subject and decided against it so was told I’d just had to put up with it if it came back.
It did come back, so off I went to the GP again and another referral to gynaecology resulted in my fifth laparoscopy.
Each time I had a laparoscopy it was a minimum of a week off work. I was always given a 2 week sick note but I had the ability to work from home so I tended to do this in week 2. Once I tried to go back into the office early and gave myself an umbilical hernia!
After my 5th laparoscopy my husband and I decided we wanted a family. I’d told him very early in our relationship that I’d been told I might not have kids. That’s a hard conversation to have with someone, and I had to have it way earlier that I would have wanted to have such a serious chat, but it might have been a deal breaker for him.
We were very lucky that I got pregnant naturally, it took a bit of trying, but we welcomed a little girl in 2014. I’d heard that endometriosis can calm down after having a baby and this was true for me. I had no periods at all for a year as I was breastfeeding, then when they came back they were fine. I thought – wow, is this what periods are supposed to be like!
Then a few years later, the pain slowly started to remerge. I was straight back to the GP, a woman – she was amazing. I was given specific tablets to help with period pain, and to reduce the length of the bleeding. I was also referred back to gynaecology.
Off I went, thinking I would be offered another laparoscopy. She said she felt I had suffered enough, 20+ years of pain and many operations and she offered me a hysterectomy. I said yes. Of course, that wasn’t to be straight forward either. A titled womb meant key hole surgery wasn’t an option so I had a full cut all the way across my tummy.
It was worth it, it did the trick. No more painful periods. I retained my ovaries as they were healthy so I didn’t go straight into the menopause, but I was told it would come early and it started a year ago. That’s a blog for another day though.
Even with all the operations and eventual hysterectomy I think I’m one of the lucky ones. Fancy being one of the ones that have to wait over 8 years to be even diagnosed. If you think you might have it, please go to your GP and keep asking until you get the answers, support and treatment you deserve.
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