“They found it everywhere,” says Anna, a 31-year-old business owner from Wrexham. “It was all over my bowel, my bladder, on my fallopian tubes...”
Anna was two weeks away from her 18th birthday when she was officially diagnosed with endometriosis, a systematic inflammatory condition in which tissue similar to the lining of the womb spreads to other areas of the body, often causing immense physical pain.
When the endometrial-like tissue was found on Anna's organs, she felt “an overwhelming sense of relief.” She tells GLAMOUR, “Someone had heard what I was saying […] the pain wasn't in my head, but equally, I had no idea what was to come.”
Prior to her diagnosis, Anna had been repeatedly dismissed by those in the medical profession. “I had a laparoscopy [an operation performed on the abdomen or pelvis] done by a gynaecologist when I was 16, who said there was nothing wrong with me and that she agreed with my GP – that the pain was all in my head.”
Anna is one half of the Menstrual Health Project, a charity that promotes advocacy and education on all aspects of menstrual health. She co-founded the project back in January 2022 with Gabz, a 31-year-old from Surrey, who had also been diagnosed with endometriosis after a lengthy battle with painful periods, pain during and after sex, bloating, and fatigue.
Like Anna, Gabz was “completely dismissed” by healthcare professionals. “I was completely misdiagnosed, dismissed at the doctors, told I had IBS or gluten intolerance, that I was just stressed,” she tells GLAMOUR.
After she was eventually after 6 years referred to an endometriosis specialist, she was diagnosed with endometriosis on her ovaries and bowel. She has since had five surgeries due to the endometriosis spreading to her bladder and womb, with her last surgery resulting in her bowel and ovary being fused together to her pelvis. This nearly resulted in her ovary being lost, plus the risk of further treatment on her bowel.
With severe adhesions also spreading from her pelvis all the way up to under her rib, Gabz was diagnosed with adenomyosis in 2017, too, which also causes immense pain and suffering, with the fear of fertility issues and the worry of ending up needing a hysterectomy. Due to years of chronic pain, she was diagnosed with fibromyalgia in 2023, which has contributed to mobility and cognitive issues.
“My mental health has been impacted massively due to living with these conditions for so many years, and I now live with severe anxiety and am awaiting an ADHD referral to be diagnosed. Some days, the pain and fatigue are so horrific I am completely bedbound, unable to move or function,” Gabz explains.
Anna documented her experiences with endometriosis on Instagram, which is where she met Gabz, who was doing exactly the same thing. “We just bonded over having the same issues really of endometriosis,” Anna tells GLAMOUR.
In the weeks after Anna was first diagnosed with endometriosis, she was scheduled to have two surgeries to remove the tissue from her organs. “I had no idea there was no cure for it,” she says. “I was very naive to think that that after those two surgeries, I would be fixed. And I had an incredible surgeon, but equally he didn't really give me the realities of the condition.”
“Am I going to have to have a hysterectomy? Am I going to have to have organs removed? What is it going to be like living with all of this damage?”
After her surgeries, the endometriosis on Anna's organs grew back. She had another surgery a year later. Now 31, Anna has had 16 operations since she was diagnosed as a 17-year-old.
“I've lost my large bowel, so I have a permanent ileostomy stoma bag, and I lost my bladder last June. so I've got a permanent urostomy stoma bag. I had a full hysterectomy at the age of 28. I've lost half my pelvic organs because of it and there's no sign of it getting any better.”
The hardest thing about endometriosis, according to Anna, is that it has a “domino effect” on the rest of the body. “Once it's spread out of the womb to other organs, they have to then operate on those organs to remove the disease.” These operations can cause damage in themselves, as Anna explains, "It impacts the nerves, it impacts the muscle function. And that's what happened to me, made large bowel completely stop working to the point of nearly it being perforated and I lost it.
“It was the same with my bladder, I lived with a catheter for four years before I had my urostomy. I was too young to be going through that.”
“We're going to see more patients ending up with stoma bags because of endometriosis, because they've had so much delay in their care.”
This domino effect is a terrifying prospect for those diagnosed with endometriosis. As Gabz tells GLAMOUR, “Anna has literally seen me hysterical worried about what the future is going to be. Am I going to have to have a hysterectomy? Am I going to have to have organs removed? What is it going to be like living with all of this damage?”
Practical things to help if you have endometriosis.
Anna sees Gabz as a “few years behind” her when it comes to the progression of endometriosis. While she doesn't want to scare Gabz, she's not afraid to be frank with her to avoid her being shunted between healthcare departments.
Earlier diagnosis of endometriosis means earlier medical intervention, which can make all the difference. Still, women in the UK are waiting up to ten years for a diagnosis – and that's before you even consider the waiting lists for treatments.
“If the doctors had listened to me when I was 14, would I have ended up losing my organs? Probably not.”
“If the doctors had listened to me when I was 14, would I have ended up losing my organs? Probably not,” says Anna. "Early intervention is key in managing endometriosis, but it's not going to cure it. As endometriosis patients, you're often left to just deal with it.
"We are hearing from patients who are far too often being told they've got severe endometriosis on their bowel and they may need a stoma. But then they're having to wait three years before they can have surgery by which time they're guaranteed to need a stoma because they've left it so long.
"The delays are so horrific within the NHS, we're going to see more patients ending up with stoma bags because of endometriosis, because they've had so much delay in their care.
In Anna's opinion, there's a medical perception that endometriosis is a “benign condition”, so therefore it's not important. This needs to change. “It still alters your life,” she tells GLAMOUR. “I got sepsis twice after treatment last year and it nearly took my life. And a bowel nearly perforating can kill you.”
“How can you roll that dice with people's health?” she adds.
The damage isn't just physical. “We've had to completely alter our lives,” says Gabz. “We've had to stop working […] For two women in our early thirties – we should be at our peak.”
While endometriosis has taken a serious toll on Anna and Gabz, they have used their joint platform to ensure that no else has to go through the condition alone. The Menstrual Health Project is a “lifeline” for Anna and Gabz. “It helps us heal our own trauma while ensuring future generations have a better head start.”
The project was officially registered as a charity in February 2023. Since then, Anna and Gabz have been spreading the word in schools, working with experts to create diagnostic toolkits and resources, as well as going to parliament to advocate for women with chronic illnesses in the workplace.
“I have a daughter who's eight and she's not far off starting her periods, and you just think, is she going to come up against the same issues we did and how can we still be failing generation after generation?,” asks Anna.
“I think we've been taught to put up and shut up, and that's how we should get on with it. And that's not the case. Women make up 51% of the population we shouldn't be choosing whether or not we prioritise women's health. It's sad that we have to fight so hard just for basic care.”
Through their friendship and advocacy, Anna and Gabz are calling for change; starting with better education.
“The same quality of menstrual health education should be mandatory across all schools in the UK,” says Anna. “And it shouldn't just be aimed at women and girls. Everyone needs to be involved in the conversation because that's the only way we're going to change the narrative that periods are something to be ashamed of.”
Change also needs to happen in the workplace. Gabz explains, “As someone who's been pushed out of a lot of workplaces – public and private employers – I think it's really important that people with chronic conditions who still want to work should be able to pursue their career.”
Finally, the government must prioritise women's healthcare. “There are 750,000 women waiting for gynaecology care in the UK,” explains Anna. But we've only got less than 4,000 gynaecologists in the whole of the UK, and that's not even specialities. I think the government is just ignoring it and thinking it'll go away.”
We know that health inequality isn't going anywhere fast, but thankfully, Anna and Gabz are leading the charge to hold the government accountable. You can follow more of their journey and download free educational toolkits at www.menstrualhealthproject.org.uk (or contact hello@menstrualhealthproject.org.uk if you need a paper copy).
If you are concerned about endometriosis, it's always recommended to book an appointment with your GP to discuss diagnosis and treatment. You can find your local GP here.
For more from Glamour UK's Lucy Morgan, follow her on Instagram @lucyalexxandra.
