The first week of March is Endometriosis Awareness Week, looking to rally support and erase stigmas for a condition that affects millions of people assigned female at birth.
Affecting one in 10 women in the UK, endometriosis can be found in four different types, superficial, ovarian, deep and extra-pelvic. Endometriosis also had a rarely known sister condition, adenomyosis also affecting about 10% of women in the UK, which is about 1.5 million patients.
Endometriosis occurs when cells similar to the ones in the lining of the womb are found elsewhere in the body. These cells can grow and change in response to hormones in the menstrual cycle, this can cause inflammation, pain and scar tissue. It is most commonly found in the pelvis and ovaries, but can rarely be found in other pelvic areas and the chest.
Despite being the second most common gynaecological condition in the UK, the wait time for a diagnosis on average is still eight years and 10 months. Key reasons for this long waiting time are how common the symptoms of endometriosis to other conditions are, along with the need for surgery to diagnose the condition.
Grace Jarvis, 20, who like her sister and mum is now having to go through the long journey to a diagnosis for endometriosis. Grace explained how usually when you first go to the doctors with issues, they tell you it’s just painful periods.
This also includes a 20-week wait for an ultrasound and a 64-week wait for a gynaecologist’s appointment, all whilst suffering from symptoms of endometriosis.
Grace said there’s a lot of ignorance around the topic, including about how her sister got asked ‘how she caught it’, when endometriosis is not something you catch, rather something that develops.
“It gets worse when you’re on your period. I’m on two types of tablets. I’m on birth control and I’m on extreme painkillers because it hurts, and people often say that it’s not that painful, but I had appendicitis and I didn’t tell anyone for two days that I had a stomach ache because I just thought it was endometriosis.
“It turns out my appendix burst when I was in hospital, the pain level can be mistaken for appendicitis, and I’ve had to take days off school and work and things because of how painful it is, and it often, for me, I’ll be walking around, and then I’ll just get these really bad shooting pains, like cramps.
“I don’t think many people take you seriously ,and when you try and explain it to them, they don’t really understand.
“They use the contraceptive pill and make you take it all year round without breaks to try and combat the symptoms. But that’s not stopping. It doesn’t work very well.”
Grace explained how it affects other parts of life, including possible infertility and having to take weeks off work for surgery recovery, but also how living with the constant pain just became life for her.
Salford graduate Bethany, 27, has been diagnosed with endometriosis sister condition adenomyosis. Having started with problems at 15, Bethany went to the doctor for heavy bleeding, when she was turned away as they said it was a symptom of the pill.
She then went again at 19 for a separate issue, when her GP said it was possibly Polycystic Ovary Syndrome (PCOS), leading to an ultrasound and with no PCOS, Bethany’s GP did not follow up on what else it could be.
Bethany said her symptoms developed significantly at 21, including bleeding for a full nine months, daily pain and passing massive clots. After more testing, STD tests and an ultrasound, she finally got some confirmation about her issues and a diagnosis of adenomyosis.
She was then told the only cure was a hysterectomy, but due to age and being childless, medical professionals refused to perform it. This led to her getting a hormone IUD, leading to her symptoms calming down massively.
“I still get cramps, my uterus is bulky, which presses on my sciatic nerve so I’m in pain every other day now but it’s a lot more manageable.
“I try not to let it affect my life, but some days during a flareup I can’t do much other than lay down and feel sorry for myself, but a TENS machine and hot water bottle always help.”
Bethany said there was little support post- diagnosis.
“There is literally no support. Once I got my IUD I never heard from the GP again. I did have to go to the GP to get my IUD replaced because it was expiring, but was told it lasted eightyears now rather than five.
“This is only true as birth control, and I only knew this because I’m in a Facebook group. After being referred to the hospital, I had to wait four months for an appointment, meaning my IUD was four months expired. My symptoms did start getting a little worse at that time, but nothing crazy.
“It’s been just over a month since my IUD was refitted and my uterus is definitely getting readjusted, but well worth the painful procedure.”
For more information about these conditions, there are support groups and information available not only on the NHS website, but through the charity ENDometriosis Endometriosis Action Month 2025 | Endometriosis UK
They also offer a free confidential helpline on 0808 808 2227 .
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