'Endometriosis Forced Me To Quit My Job'

When Sarah Smallbone came off the contraceptive pill after nearly 20 years, hoping for some respite from the side effects, she could never have imagined the excruciating pain that was to follow.

Sarah, now 38, initially took the pill for her acne but over the following years, unbeknownst to her, it would mask her endometriosis - a painful and debilitating condition where tissue similar to the lining of the womb starts to grow in other places.

For many women with endometriosis, the tissue thickens and bleeds in a monthly cycle, like it does in the uterus. This was true in Sarah's case, and after coming off the pill, she was eventually forced to take three to four days off work every month due to the unbearable pain it caused her.

Unfortunately, like many other women with the disease, Sarah, from Essex, feels she didn't receive the support she needed at work, which ultimately led to her resignation.

Some 40 per cent of women with endometriosis worry about losing their job and one in six sufferers have even had to give up work due to the condition.

Meanwhile, statistics released this month by Endometriosis UK indicate that the majority of young women in the UK would feel concerned about discussing such matters with their employer.

Sarah Smallbone)

Here, Sarah tells Tyla how she ended up having to resign from her job.

"I was never somebody to have time off sick, I always went above and beyond and was a loyal employee," says Sarah.

"It all started when I came off the pill. My GP took me off it because there were some reported health risks associated with the specific pill I was on. I tried a few others, but didn't have a good experience, and so decided to come off it altogether.

"When I did, I was off sick every month for the same three or four days at the same time I had my period. I went to my doctor for some scans and eventually I had my first operation, where they confirmed that I had endometriosis 'everywhere'. They told me it had been there for years but that the pill masked the symptoms.

"Shortly after this, my employer decided they were going to give me a disciplinary because I'd gone over the company average for sickness."

Sarah says that despite the company being aware of her condition, "it didn't seem to matter".

"I had been coming into work clearly in pain, it got to the point where I felt like I needed to prove just how sick I was," she continues.

"Shortly afterwards, I was scheduled for yet another surgery to remove a cyst and also my appendix, because the endometriosis had grown all around it. Around this time I was still in agonising pain, and had to either drag myself into work or make a phone call to an - often male - manager, who really didn't want to hear about my 'women's problems'.

"Once I returned after my absence, I would have a 'return to work' interview, where one of the managers would write things like 'stomach ache' or 'upset tummy'. I'd had surgery, but they were noting it down like I had an upset stomach. I think this all contributed to the feeling of not being believed."

Sarah Smallbone)

For the following six months, Sarah's condition gradually improved, but unfortunately, she then started to suffer from further symptoms that indicated the endometriosis could have spread to her bowel.

"I started bleeding when I went to the toilet - but only around the time of my period," Sarah continues.

"I had an MRI and it was confirmed that I had endometriosis on my bowel. I was put on a waiting list to have part of my bowel removed and during that time I was given Zoladex injections [a medication which is used to suppress production of sex hormone], but the side effects were awful.

"Despite this, I still carried on working and never asked for any adjustments. I had the surgery, which did not go to plan. It should have been three hours but turned into nine. I subsequently went into kidney failure and ended up in intensive care on dialysis. I was supposed to recover for six weeks but it ended up being three months."

When Sarah returned to work after her ordeal, she says she was met with a disciplinary letter.

"My first thought was, I'm sorry that I nearly died!" She says.

"I sought some help from Citizens Advice who said that whilst my condition wasn't recognised as a disability, the symptoms were disabling, so on an individual basis it could be recognised under the Equality Act.

"I explained all of this in the disciplinary and in the end I was issued with a warning for a year instead.

"I knew at this point I still had to have an operation, and I had no idea if I would get a disciplinary after that one. I'd had four operations in three years, how could my sickness be compared to somebody else?

"I even had a colostomy bag, but was never offered a phased return to work, and my job role was never adapted. I just carried on."

Stressed and concerned about her future at the company, Sarah later handed in her notice, and says she never received a response her employer.

"It was hurtful, I felt as though I was just a number," Sarah says.

Sarah Smallbone)

Sarah's condition has showed much improvement after her surgeries, and she says she now feels supported in her place of work.

"It's so important for employers to be supportive. It's a very difficult thing for people to manage anyway, it's not just stressful, it's emotionally draining to constantly be in pain," says Sarah.

"Having an understanding employer takes a whole load of stress away."

Endometriosis UK has launched The Endometriosis Friendly Employer scheme, which allows employers to commit to developing a work environment and culture that enable employees with endometriosis to thrive at work.

You can find more information - as well as support and advice on endometriosis - here.