Karen Dugmore, 44, from Birmingham, had normal periods until after she had her children.
“I had two children within three years and started to feel serious pain around my time of the month at age 35. I went to the doctor and was told it was period pains, so I just got on with it.”
By the time she was 41, during the pandemic, she had taken significant turn for the worse.
“I began bleeding so much that if I stood up, blood clots would fall to the floor. I was wearing five sanitary towels in an hour and it felt as if I was peeing blood into the towels. I was anaemic and so unwell.”
She was working from home at the time and so put up with it, she said, until she had a conversation with a female colleague. “She said to me: ‘It shouldn’t be like that.’”
Untypically for women with adenomyosis, Karen was diagnosed with the condition within eight months of getting in touch with her doctor.
“I felt lucky from start to finish,” she said. “But I am sitting here, in pain. It’s constant. I think hysterectomy may be the only option, although I am having injections to medically induce menopause first, to see if that helps. I am glad this is being spoken about. I have struggled to explain the pain.
“I’ve never heard anyone describe the condition like the doctor on Naga Munchetty’s show on Monday. It was so informative. Only last night I felt as if I had the bowling ball feeling in my stomach and actually thought I was imagining it.”
Sarah, from Hampshire, was diagnosed with the condition at the age of 43, after suffering with severe pain and bleeding since the age of 14.
“It took almost 30 years for me to get a diagnosis,” the 50-year-old said. “I had heavy periods my whole life, and was given the pill at a young age to try to lessen the bleeding, but the pain was terrible every day. I would be doubled over in pain often, in the middle of the street, and later in life I had steroid injections in my hips which turned out to be unnecessary.
“My whole life, I was on pain killers and told by doctors that I was suffering from IBS. This condition made my uterus large and tilted which impacted other parts of my stomach, but this was not IBS.”
After her second pregnancy, Sarah’s bleeding became so uncontrollable that she “couldn’t do very much”.
“I went to the GP to say I could no longer cope and she agreed that it might be endometriosis. Luckily, I had private medical cover and got a speedy referral.”
The consultant suspected adenomyosis after a scan, and advised Sarah to undergo a hysterectomy, which she did a few weeks later. “They said it was the only solution, but they could only confirm I had adenomyosis after I’d had the surgery.”
Sarah, who works in education and had two children at the age of 34 and 37, did not intend to have any more and says her life has hugely improved since she has recovered from the hysterectomy.
“It removed my pain completely. This is a little-known condition that is hugely debilitating and more should be done to raise awareness and understanding.”
For Emma Lewis-Kalubowila, 38, getting more information about her own body and pain was “really powerful”, she said, referring to her finding out that she had adenomyosis on top of endometriosis.
“I’d never heard of adenomyosis before, until my own diagnosis. I was diagnosed with endometriosis six, seven years ago, but after having kids something felt different. Bloating, a heavy “full” feeling and tenderness in my stomach. It was different to the endo pain – and I was worried it was something sinister.”
After a long wait to be seen in hospital, Emma, who lives in Stockport, had a diagnostic MRI in December that confirmed adenomyosis.
“I felt so much better knowing what I had, and allayed my fears about what it was – I thought it could have been ovarian or womb cancer, given my symptoms.”
Like others, Lewis-Kalubowila said she had been given conflicting advice. “I feel passed from pillar to post, but it’s so helpful to read and hear other people’s experiences,” she said.
For the moment, Emma is managing the condition with Ibuprofen. “I’ve asked to be put on a different contraceptive pill to see if that brings relief. There are some days when you have to curl up in bed, but you can live a good life with this condition. I’m just glad to know my symptoms have a name.”
