Women share the pain of years spent fighting for an endometriosis diagnosis

Endometriosis is a debilitating condition that causes painful or heavy periods. It can lead to infertility, fatigue and bowel and bladder problems.

Around 1.5 million women in the UK currently live with the condition. It can affect all women and girls of a childbearing age.

But despite so many women suffering – it takes, on average, seven and a half years for a sufferer to finally receive a diagnosis.

Women are having to really fight to be listened to in order to receive a formal diagnosis – which can mean months or years of going undiagnosed, being ignored or fobbed off, trialled on various treatments or being misdiagnosed.

We’ve spoken to four women whose diagnosis of endometriosis took years to receive. They’ve told us about the pain and frustration they went through just to be listened to.

What is endometriosis?

Endometriosis is where cells like the ones in the lining of the womb are found elsewhere in the body.

Each month, these cells react in the same way to those in the womb, building up and then breaking down and bleeding.

Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.

Endometriosis causes painful or heavy periods and can lead to serious problems such as infertility, fatigue and bowel and bladder issues.

Nicola, 32, London

Nicola Box spent 14 years fighting for a diagnosis of endometriosis.

She started experiencing symptoms as young as 14, but didn’t notice them having a huge impact until she was 18.

When she was 19, she saw a doctor about UTIs and IBS. She told them about her infections, bloating and stomach cramps but ‘they didn’t have much to say’.

Nicola tells Metro.co.uk: ‘I was given the diagnosis of recurrent UTIs and IBS. They didn’t seem worried or investigate it further, even though I told them I was fainting in excruciating pain with both, and bleeding. It was all month round and not just linked to my periods.

‘My symptoms have gotten worse every year. I went from being a young girl who was full of energy to someone who felt like a 90-year-old. I gave up trying to work full-time eight years ago and became self-employed instead.

‘I am scared to leave the house most days so my social life almost doesn’t exist and my partner is always worrying about me and making sure I am okay. Our intimate relationship really suffers too as I am unable to be close to him without being in pain.’

Nicola said she was ‘fed up’ of doctors dismissing her symptoms, and turned to the internet instead. Coming across endometriosis while Googling her symptoms, she spoke to her Godmother about it as she had already been diagnosed with the condition, and was pushed to look into the possibility.

Nicola says she felt like a ‘liar and a hypochondriac’ when doctors didn’t listen. She wouldn’t admit to herself how unwell she was, even though she knew what she was going through wasn’t normal.

To receive a diagnosis, she sought private treatment in January of this year because she was tired of not being taken seriously. The doctor examined her and gave her an MRI, which showed deep infiltrating endometriosis of the bowel and rectum.

Currently, using birth control is Nicola’s only form of treatment, which she says ‘only masked symptoms’. She has switched to progesterone cream and is awaiting a bowel resection and excision surgery with an endometriosis specialist.

‘I feel frustrated that it had been left so long and has caused so much damage due to this,’ she says. ‘I try to raise awareness in a positive way and help others rather than dwelling on it.

‘Endometriosis means an uncertain future. I don’t know what lies ahead and that scares me. pretty much have ruled out having children due to the added stress it’ll cause to my body.

‘I feel extremely frustrated and angry. [Endometriosis] really affected my mental health when I was first diagnosed as I realised I had this for life. There is no cure.

‘But luckily I’ve managed to pull myself out of that dark place and focus on raising awareness for others instead.

‘Endometriosis is dangerous, it’s a full-body disease and needs to be taken seriously.

‘I feel women often play down their symptoms as we have been conditioned to think that periods are naturally a painful experience. This shouldn’t be the case and birth control shouldn’t just be thrown at us to mask symptoms, symptoms should be investigated thoroughly.’

Emily Jane, 25, Uddington

Emily Jane Slade, a copywriter, spent nine years trying to get a diagnosis.

She was 10 when she got her first period. Her periods were painful, heavy and irregular.

‘The pain was so excruciating that I would be absent from school for three or four days a month,’ she says

‘I first saw a doctor as soon as the pain started. I would explain how bad the pain was and they would use phrases such as “sometimes this is just the way things are for women” or “maybe your body is just made up that way”.

‘I was fobbed off for several years and given different kinds of painkillers to try. Eventually I was put on the pill to help control the periods, but the pain was still just as bad.

‘My mum once questioned a doctor if it could be endometriosis, and he told her it was impossible for a girl as young as 10 to have it.’

When Emily was 16, she started experiencing pain every other day rather than just when her periods came.

She continues: ‘I remember sitting a test in high school one day, and the pain would just overtake my body. I couldn’t write my answers because my whole body had gone numb.

‘By the age of 19, I was getting pain every day. I had worked in retail at the time, and I remember the pain was so powerful that I almost collapsed on the shop floor. That was the last straw for me.’

During the nine years it took Emily to receive a formal diagnosis, she visited the doctor more than 20 times.

She was referred to gynaecologists for ultrasounds, but nothing was found. Rather than investigating further, it was assumed that there was nothing wrong.

Emily says: ‘I had become so fed up with the lack of help I was receiving that I started researching online. When I came across the Endometriosis UK page, I became quite emotional.

‘Every symptom rang true for me, and it was frustrating knowing that I would have to go through surgery to be diagnosed, but I knew that I had to fight for it. The next time I saw my doctor I had the list of symptoms with me and pushed heavily to be referred for a laparoscopy.

‘I wrote a list of the symptoms I was experiencing and had a print off from the Endometriosis UK website to explain the comparison. I felt like I was fighting for them to listen to me right up until I had the date for my laparoscopy.

‘I was diagnosed with endometriosis through laparoscopic surgery on 28 July 2014.

‘There is nothing worse than being told over and over again that you’re making the pain up in your head. That it simply could not be as bad as you’re describing. You begin to question your own sanity, instead of just listening to your body.

‘The stigma surrounding women’s health issues is particularly difficult, because there’s a level of embarrassment you feel for bringing it up all the time. To this day, I will automatically downplay my pain in order to protect those around me.’

Rosie, 27, London

Rosie Besant, 27, an assistant fashion buyer from east London, started experiencing symptoms of endometriosis at the age of 12.

She finally received a diagnosis following an investigative laparoscopy procedure in October 2019, following 13 months under a specialist consultant.

She says: ‘I’ve always had horrendous periods so my pain tolerance was high – I was just used to it.

‘In May or June 2018 I woke up one day with piercing pain on one side that was notably worse than anything I’d had previously. I called in late to work as I couldn’t really move off my bed.

‘It subsided and I put it down to ovulation pains. Then in early August 2018, it was a Saturday and my boyfriend was over for the weekend, we were about to head out but the same pain was back ten times worse,

‘I was in tears, could barely move, felt feverish, sweaty and was white as a sheet. He drove me to A&E but they didn’t really do anything, just took standard observations, gave me painkillers and told me to book a GP appointment to get my IUD checked.’

Rosie has been in and out of the doctor’s surgery since she was 17, and has been on five different contraceptive pills to help manage the pain and bleeding. She’s also tried both types of the coil.

She says she put everything down to bad periods, but having to go to A&E made her realise what she was experiencing wasn’t normal.

She says she was dismissed by doctors ‘countless times’.

Rosie explains: ‘I remember one incident with a male doctor who just shrugged and told me to buy some Ibuprofen and crack on. I’ve never been misdiagnosed per se, just had it put down to period pains every time.’

Living with endometriosis isn’t only painful and stressful, it’s also been expensive.

‘I have ruined a few pairs of jeans, at least one dress and (rather memorably) a pair of dungarees on a long car journey to Wales because I was just haemorrhaging blood,’ says Rosie. ‘I always had a jumper on the back of my office chair to tie round my waist in case.

‘It’s been expensive too – I often had to wear a pad and a tampon and it wouldn’t be unusual for me to have to change everything hourly at its worst peak. I kept pads in every conceivable bag/desk and wore shorts under all my dresses and skirts. When I was on my period I was hyper-conscious of everything about my body.’

Rosie finally got a diagnosis after speaking to a friend.

She explains: ‘After the A&E incident, I spoke to a friend who happens to be a sonographer and I booked to see her. I had an internal ultrasound and she found a burst cyst and a ton of endometrial fluid. That burst cyst explained the horrendous afternoon in A&E.

‘Armed with a verbatim description of the results and copies of my scans I booked to see a GP, showed the evidence and finally got a referral to a specialist. I even brought a friend with me to make sure I wasn’t fobbed off yet again.

‘I saw the consultant the next month who sent me for another internal ultrasound, then I had the results consultation two months after that. My mum (a nurse) drove 100 miles to accompany me to that to make sure that I got answers.

‘Following my second internal ultrasound in September 2018 under the specialist consultant, it was inconclusive but my symptom history convinced the consultant that they needed to operate via a laparoscopy to really get a grip on what was going on.

‘The consultant, who was and continues to be amazing, referred me for an operation which I got 11 months later (yes, that is how long his waiting list is) in October 2019.

‘I was under four times longer than planned, and they discovered extensive endometriosis across my womb and ureter and removed a 4cm cyst from my left ovary.’

Rosie says not being listened to was ‘really frustrating’ and she ‘felt really defeated’.

She adds: ‘I had acquired a roster of pills – different contraceptive pills, mefenamic acid, extra strong painkillers – and nothing really ever solved the problem for very long.

‘I just thought this was how I was going to be and I was going to have to just manage these horrible, erratic periods for the rest of my life.’

Shireen, 37, London

Shireen Ali-Khan, a senior communications consultant, spent 20 years in pain before she was officially diagnosed.

She tells us: ‘I had always had painful periods, feeling nauseous, achy, light headed, and the overwhelming feeling that a dragon wanted to rip through my stomach and into the world, this all began from the age of 10 onwards.

‘I started seeing the doctor in my early teens, when I often had low iron and needed supplements. I would always explain my symptoms and was always told that “some people have painful periods”.’

Endometriosis severely affects Shireen’s social life. She says she’s always the ‘one that cancels’, and that she’s ‘known to always say “I don’t feel very well”.’

She adds that her pain has been a ‘constant source of worry and issue’ for her.

It wasn’t until Shireen reached her 30th birthday that she started the process of receiving a formal diagnosis.

She says: ‘I was approaching my 30th birthday and had been experiencing some pains, these were more than usual. I had private insurance through an employer for me to be seen by a specialist.

‘When I described my pain he requested ultrasounds, MRIs and blood tests, I was tested for ovarian cancer on my 30th birthday. Upon completing the tests it was seen that I had PCOS with large painful cysts.

‘When I met with the gyno to talk about surgery, we discussed the possibility that I may have endometriosis. For those that don’t know, you can only diagnose endo through surgery and so the joke was “whilst you’re in there” please check for endo and laser if off.

‘This is exactly what my surgeon did. She took away my cysts and lasered my endo. This is not a one-time surgery as they can and in my case did grow back. I have had two of these laparoscopic surgeries and many other procedures in my wellness journey.’

Shireen feels her diagnosis has given her the ‘freedom’ to know that she wasn’t making her symptoms up.

She continues: ‘I feel freedom in knowing that I hadn’t made it up, or being weak. I have endometriosis. I have confirmation of this. On the other hand, knowing I have it makes me sad – as it’s confirmed all of the negatives, and that it won’t ever go away. I feel nauseous, achy, and the dragon clawing at my tummy is there most days,

‘My last surgery was six weeks before my wedding, as I had been experiencing horrendous pain that I had been bowled over and relying heavily on painkillers. Five months after being married, we have been blessed with a baby.

‘He is truly a gift, as I had always been advised I may not be able to have children. It took ages to accept this and then found out I was expecting.

‘I had no idea and it took my own mum to question my new reasons for nausea. I am one of the lucky ones, as I know many endo sufferers who haven’t been so lucky.’

The reality of getting an endometriosis diagnosis

According to Endometriosis UK, women go an average of seven and a half years between first seeing a doctor about their symptoms and receiving a diagnosis of endometriosis.

This is due to a number of factors, but is often because the symptoms of endometriosis are similar to other common conditions.

The charity says: ‘It’s important to share as much information with your doctor as possible. The only definitive way to diagnose endometriosis is by a laparoscopy – an operation in which a camera is inserted into the pelvis via a small cut near the navel.

‘The surgeon uses the camera to see the pelvic organs and look for any signs of endometriosis. If endometriosis is diagnosed, the endometriosis may be treated or removed for further examination during the laparoscopy.’

Because this debilitating condition manifests in a variety of ways, it’s important that if you are struggling with what you think is endometriosis, you see your doctor and explain in detail everything that’s going on. It may help to take a list of your symptoms along with you – and a family member or friend for support.

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