IT took 12 years for doctors to diagnose Carla Cressy with a condition that had been so agonising, it would leave her bedridden and unable to work.
By this point, aged 25, her insides were “fused” together with scar tissue, she says – but it shouldn’t have taken so long, given the agony affects one in 10 women worldwide.
Carla says deep down she always knee something wasn’t right with her period pain Credit: Supplied
She went 12 years waiting for a diganosis, which by the time it came, turned Carla’s world upside down Credit: Supplied
For many women, period cramps can usually be alleviated with painkillers, rest and a hot water bottle.
But, what happens when the pain is so severe that it disrupts every aspect of daily life and nothing seems to bring relief?
For Carla, 35, this was her reality from the time she started menstruating, in 2004, at the age of 13.
“Deep down I always knew something wasn’t right,” she says.
Carla’s crippling pain, profuse bleeding and bowel issues were warning signs of endometriosis Credit: Supplied
“I have three sisters, and from quite a young age, it was obvious my experience of periods was very different.
“Women talk about periods being ‘painful’ or ‘heavy’ – but I was vomiting, collapsing, and the pain was so severe it would literally bring me to my knees every single month.”
Her crippling pain, profuse bleeding and horrendous bowel issues were warning signs of endometriosis – which affects more than 1.5 million in the UK.
It currently takes an average of eight years and 10 months to get a diagnosis in the UK, according to The Endometriosis Foundation.
Why? Because until now, there hasn’t been a single test that confirms it; ultrasound scans, MRI or a laparoscopy – where a camera is inserted through a tiny cut in the stomach – may be necessary.
Plus, women may face dismissal about their symptoms.
Dr Tania Adib , a London-based consultant gynaecologist, says: “A lot of women with painful periods are often dismissed and given painkillers.”
But that could all change.
Soon, women should be able to ask their for two new tests being recommended under draft guidance.
This week, the National Institute for Health and Care Excellence has , EndoSure and Endotest, for three years, during which time more evidence can be collected about how well they work within the NHS.
Meanwhile, “breakthrough” findings from the University of could one day lead to a blood test for the condition.
The team found that women with endometriosis have , including a greater number of the so-called “male” hormone androgens compared to those without the condition, which could be identified via simple and non-invasive testing.
Carla says: “As someone who has spent years in the endometriosis world I think these new tests are potentially one of the biggest shifts we’ve seen in diagnosis in decades.”
But she remains cautious, due to the small number of study participants.
“I think NICE’s phased approach makes sense.
“My biggest concern is that a negative result should never become a barrier to specialist assessment or further . We cannot allow ‘your scan was normal’ to become ‘your test was normal’.”
Carla, who lives in Richmond, London, first went to her GP at 15 years old and was referred to a gynaecologist for a scan.
“I was told ‘nothing was there’ and was basically sent away with more medication,” she remembers.
“By the time I was 17, I had already gone through seven different hormone pills to try and manage my symptoms, but nothing seemed to help.”
Carla says she tried to settle with the gynaecologist’s diagnosis of just ‘bad periods’.
What is endometriosis?
“Endometriosis is where cells similar to those in the lining of the womb grow in other parts of the body, for example, in the ovaries and pelvic area, and sometimes the bladder and bowel,” says Dr Tania Adib.
“These deposits also breakdown and bleed every month.
“This causes inflammation, potential scarring, and surrounding tissues may stick together.
“Symptoms can start 4-5 days before your period and may include severe, debilitating pain, heavy periods, pain during intercourse, and when you go to the toilet.
“If symptoms persist, always insist on a referral to a gynaecologist, and further investigations.”
You may be referred for an ultrasound scan which “often don’t show anything”, says Dr Adib.
“So, you may also need an MRI scan or a laparoscopy.”
Dr Adib says: “Treatments include the combined contraceptive pill, progestogens or GnRH analogues – to stop the production of oestrogen.
“Surgery may be offered to remove lesions and cysts.
“Such interventions can help, but they do not stop the condition from progressing.”
But because her periods were so irregular, sometimes coming every two weeks, she was in pain frequently.
“As a result, I missed a lot of school,” she says.
At 20, Carla moved away from home and her symptoms worsened.
“There was pain and bleeding during sex, which made relationships very difficult,” she says.
“Often it was easier to be single.
“There were so many moments where the pain completely took over my life.
“I had long periods where I was essentially bedbound, unable to walk properly, eat, or even go to the toilet without severe pain.
“There were countless cancelled plans. Instead of having fun with friends, I’d be stuck at home, feeling like I was missing out on life.
“I also lost three , because I was so unwell.”
By her mid-20s, Carla’s condition had got so bad she was being rushed to hospital every week, because her bowel was no longer functioning properly.
Bowel endometriosis causes pain when going to the toilet, sometimes blood in stool, constipation, diarrhoea or a dull ache in the lower back.
“I was barely eating,” says Carla.
“At one point, I went down to 6 stone. I had also become severely anaemic due to the prolonged bleeding.”
But no one had answers, until she was 25.
“My diagnosis only came about when I was rushed into hospital after my symptoms were mistaken for appendicitis,” she says.
Carla had her appendix removed but continued to be unwell, so went back in to hospital where they did surgical investigations.
“This is when it was discovered that I had severe stage four endometriosis affecting my pelvis, bladder and bowel,” she says.
“I had been diagnosed with frozen pelvis disease, one of the most severe forms of endometriosis, where organs become densely stuck together due to extensive scar tissue and inflammation.
“I spent four weeks in hospital. Overnight, my whole life changed, and I had to move back home with my parents.
“Over the next few years, I underwent bladder reconstruction surgery, bowel surgery, and had part of my bowel removed.
“I lived with a stoma for just over 18 months, before later having it reversed.
“I had no other choice than to undergo a total hysterectomy. This led to surgical at the age of 29.”
In 2015, Carla began a blog about her endometriosis story, which led to The Endometriosis Foundation, and she went on to study nutrition.
She says: “Certain nutrients, such as seaweed, turmeric and antioxidants, combined with an anti-inflammatory diet, can help to reduce inflammation, which is a common driver in endometriosis symptoms.
“Gradually, I noticed marked improvements.
“I had more , my mood was better, I was sleeping well and no longer suffering with symptoms like I used to.”
This led Carla to collaborate with marine biologist, Dr Craig Rose, and other nutritionists to create Dr Seaweed Endo+ – £44 for 60 capsules – a supplement to support thyroid , hormone balance and energy metabolism – all areas that are commonly disrupted by endometriosis.
“This daily supplement combines all the nutrients I need to help manage inflammation and my overall wellbeing,” says Carla.
Carla studied nutrition and collaborated with the brand Dr Seaweed to create a new supplement for women with endometriosis Credit: Supplied
Dr Seaweed Endo+ is a supplement to support thyroid health, hormone balance and energy metabolism Credit: Supplied
“Seaweed is a rich source of natural iodine, an essential trace mineral that the body can’t make for itself.
“Iodine plays a crucial role in thyroid hormone synthesis and overall health. So, deficiencies can have far-reaching effects on hormonal balance, and chronic inflammation.”
For Carla, turning her 12-year struggle into a resource for others was a turning point.
She is dedicated to ensuring other women have the tools and support they need to navigate the condition and advocate for themselves.
She says of testing: “Endometriosis is a complex and highly varied disease, and no single test can tell the whole story. But if these tests can help some people reach answers sooner, that would be hugely significant.”
I was told to ‘live with the pain’
Charlotte Stone, 46, a PR who lives in Hampshire, spent over six years suffering until she was finally diagnosed with endometriosis when she was 32.
“A doctor told me I’d have to learn to live with the pain”
“For years, I used to suffer from all sorts of weird symptoms, including bladder and bowel pain, achy joints, headaches and nausea.
“I’d also get what I now know is ‘endo flu’ – achy joints, headaches, nausea and fatigue. It felt like having flu and a hangover at the same time.
“My symptoms were cyclical – they’d flare up mid-month and before my period.
“In all, I’d only ever have two pain and symptom-free weeks a month.
“I used to be in and out of the doctors where I was told I had IBS, then PCOS and stress.
“One doctor told me I’d have to ‘learn to live with the pain’.”
While Charlotte battled persistent bloating, pain during sex and symptmos similar to UTI, it affected her relationships.
“Sex was often very uncomfortable and sometimes painful, because it felt like everything internally was swollen and sore,” she says.
“My partner at the time, James, used to say there was always something wrong with me – and, because I didn’t have a diagnosis, I started to believe that too.
“I felt like rubbish as if I was just this bag of problems. We were together for 7 years.”
Charlotte had a private scan that showed she had adhesions on her bowel.
“I showed the scan to my doctor and was finally referred for a laparoscopy,” she says.
“This showed the endometriosis was everywhere – on my bladder, my bowel, my ovaries.
“My ovary was actually attached to my bowel.
“I remember feeling such relief. The diagnosis explained everything.
“I had surgery to clear out the adhesions, but I was told the endometriosis can come back. “That’s when I knew I had to take control of my health.”
Charlotte, who split with her ex, began reading and researching everything .
“I cut out anything that triggered inflammation – gluten, caffeine, alcohol, processed foods – all of which made my symptoms worse,” she says.
“I also started taking supplements including magnesium, turmeric, seaweed and fish . It wasn’t about one big change. It was about tweaking everything.
“If I don’t stay on top of it, symptoms flare up again. That ‘endo flu’ feeling comes back. It’s something I have to work with every day.”
Eze Chidiebere Paul
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