When Hannah Alderson was in her late twenties, she noticed a strange “niggling” pain in her stomach — a “throbbing, scratching” sort of feeling. She wondered whether it had something to do with the coil, “scraping my insides”.
Then the pain got worse. “It felt like someone was stabbing me,” she said.
Over the course of around two years, Alderson, now 39 and a registered nutritionist and hormone specialist, said she saw numerous healthcare professionals who failed to diagnose her with endometriosis, a medical condition in which cells similar to those in the lining of the uterus grow outside of it, in areas such as the ovaries, fallopian tubes and pelvis lining.
One doctor told her she had trapped wind. A blood test didn’t identify the problem. At one point she brought up endometriosis to her GP, but said that her doctor had to look up what it was. “They hadn't even heard of it,” she said.
“The thing is that was 10 years ago,” she added, “The same thing is happening [today] in terms of being brushed off, just told to eat a bit less or lose weight.”
“I don’t think much has changed,” she laments.
Indeed, last week, model Barbara Palvin, told a similar story. The Hungarian model and actress posted on Instagram that she’s been “dealing with the difficulties that can come with my periods” such as fatigue, severe pain and “sleepless nights on the bathroom floor” for “some years”, but only recently received surgery for endometriosis. “I thought this was just how it works for me,” she wrote.
You start thinking, Am I making this up in my own head? Am I imagining it?
Palvin said she was surprised she hadn’t been diagnosed with the condition earlier. “I’ve been going to check-ups [with] my gynecologist every year. I thought if I had endometriosis I would have known about it by now.”
Alderson and Palvin’s experiences are characteristic of so many other people’s who are living with endometriosis today. Approximately 1.5 million in the UK are affected by the condition — which has symptoms including extreme period pain, heavy periods, and pain when you poo or pee — but it takes an average of eight years and 10 months to receive a diagnosis (according to Endometriosis UK).
“The tricky thing with [conditions such as] endometriosis is you can't see it, and as soon as there's a condition you can't see, you start thinking, Am I making this up in my own head? Am I imagining it?” Alderson said.
Earlier this year, two pills were approved for use for endometriosis on the NHS. But despite this development in treatment methods, diagnostics lag far behind.
The new NHS treatment options are promising, but without parallel innovation in early diagnostics, too many people will continue to wait years for recognition
“The new treatment options on the NHS are promising, but without parallel innovation in early diagnostics and patient stratification, too many people will continue to wait years for recognition and tailored care,” Valentina Milanova, CEO of gynae health company Daye, told The Standard.
So why does endometriosis still take so long to be diagnosed?
“No, no, you definitely don't have endometriosis”
There is currently no cure for endometriosis, but symptoms can be mitigated with medication or surgery. In March, a new pill, known as relugolix combination therapy, was approved on the NHS. It works by blocking specific hormones that contribute to endometriosis while providing sufficient hormone replacement.
Then in May, another pill, linzagolix, was approved for use for endometriosis treatment on the NHS. However, Endometriosis UK warns that the pills “may be suitable for only a small proportion of the 1.5 million with the disease” (for instance, it’s not suitable for those trying for pregnancy), and even for those who are eligible, it manages symptoms, rather than curing the disease.
Then there’s the issue of getting diagnosed with endometriosis in the first place. In 2021, like Palvin did earlier this month, Love Island star Molly-Mae Hague opened up about being diagnosed with the condition, after doctors previously told her that she didn’t have it.
@glowwgirliess It took me going to the doctors 5 times to get diagnosed!!? #mollymae #endometriosis #endometriosisawareness #women #awareness #health #symptoms #endometriosischeck #statistics #advice #relatable #motivation #uplifing #diagnosis #misdiagnosed #mollymaeendometriosis
♬ original sound - glowwgirliess
“I went to the doctors a couple of times. I was like 'I really do think I have endometriosis', I have every sign and symptom of it, my period pains are to the point where I literally can't stand up” she said in a video.
However, "Every single doctor said to me 'no, no, no, you definitely don't have endometriosis'."
The challenges of diagnosis
So why are medical professionals so poorly equipped to diagnose patients with endometriosis? “The barriers to progress are several,” Dr. Amit Shah, gynaecologist and co-founder of Fertility Plus, told The Standard.
One challenge is that symptoms are similar to what is considered to be “normal” period pain, and can resemble other conditions such as IBS, meaning that it’s often missed by medical professionals.
What is endometriosis?
Endometriosis is a medical condition in which cells similar to those in the lining of the uterus grow outside of it, in areas such as the ovaries, fallopian tubes and pelvis lining.
Symptoms include:
- Painful periods
- Painful sex
- Pain during bowel movements or urination
- Excess bleeding
- Fatigue
- Diarrhea
- Constipation
- Bloating
- Nausea
“There is still no single biomarker that reliably identifies it, unlike conditions such as diabetes or pregnancy. The disease itself is biologically complex and behaves like a chameleon, mimicking many other conditions,” Dr Shah said.
“At present, the most effective non-invasive test is MRI, when interpreted by a specialist, particularly for deep infiltrating disease. However, MRI has clear limitations,” he says, explaining that the imaging technique cannot reliably detect certain forms of the condition.
Having the validation was incredible. Putting a label on things is really important
The best way to diagnose the condition is through laparoscopic surgery, but patients aren’t always referred for this, and not everyone has access to it. “Endometriosis UK wants to see advances in research to find better diagnostic tools, so that surgery is not the only definitive diagnosis method,” Jo Hanley, Specialist Advisor at Endometriosis UK told The Standard.
For Hannah Alderson, who has since published a book called Everything I Know About Hormones, drawing on her experience of endometriosis, eventually being diagnosed with the condition was hugely impactful.
“You go mad because you can't see it,” she said. “Having the validation was incredible. Putting a label on things [is] really important.”
New research published earlier this year has indicated that endometriosis is more than just pelvic pain but a systemic, inflammatory disease that affects the whole body.
For Milanova, Daye CEO, this is promising. It “paves the way for endo subtypes, which could transform how we screen, diagnose, and treat patients. Instead of a “one-size-fits-all” approach,” she told The Standard.
“Instead, we may soon be able to tailor treatment strategies based on the unique constellation of conditions a patient presents with.”
