A medical student who cried and vomited after sex was in so much pain she thought she would die.
Olivia Charlton, a fourth year student at the University of Liverpool, was 13 when she first experienced "absolutely horrific period pain" that kept her off school, "writhing around in bed". She thought "it was normal" and the pain went away in her later teens.
But while pain during her periods stopped, in the last four years Olivia has experienced "horrifically painful" sex. She told the ECHO: "I'd be in agony. We're talking me being on the toilet, crying and crying and crying, sweating, vomiting in the sink, just in a horrific place honestly thinking I was actually going to die at one point, the pain was so immense.
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"My partner, bless him, slowly got into the routine of having to bring in water, having to rub my head, telling me I wasn't gonna die from the pain. This just kept happening more and more.
"It was happening maybe once every few months, then it was once a month, and then it was every couple of weeks. And then it was nearly every single time."
Olivia, who lives in Mossley Hill, first heard of endometriosis in medical school, and recognised some symptoms. Affecting roughly one in ten women, and some trans men and non-binary people, it causes pelvic pain, heavy, painful bleeding and obstructs organs as tissue similar to the lining of the womb grows around the body, according to the NHS. No one knows what causes it, and there is no cure.
Despite being almost as prevalent as diabetes and asthma, it takes on average seven and half years to be diagnosed, let alone treated, according to Endometriosis UK. It takes an average of over seven years from the start of symptoms to diagnosis, with many reporting that they have had their symptoms dismissed by healthcare professionals along the way.
Olivia was "dismissed a couple of times", but she wasn't angry like "most women in this situation would be", because she was "in denial" herself. She explained away symptoms she didn't realise were connected.
Her constant need to urinate was because her "bladder's the size of a walnut", she joked with friends. Week-long bouts of "serious constipation" were down to irritable bowel syndrome, she thought.
Olivia said: "I was just in denial for so long, even though I knew something wasn't right. I was almost like, 'I probably do have endometriosis, but really, what is anyone going to do for me at this point? I felt a bit hopeless."
After months of escalating pain, Olivia finally went to a doctor with the encouragement of her partner. An ultrasound showed nothing, so they removed her contraceptive coil thinking that could be the cause. But the pain persisted.
Olivia managed to manage the pain for another eight months before booking a specialist appointment. She was finding it "incredibly difficult" to cope, despite her partner being an "amazingly supportive person".
The 25-year-old said: "Sex is such a big part of relationships and you're worrying like, 'Is this partner still going to want to be with me?', you know, it's hugely impactful, it makes you just feel so self-conscious."
But sitting with a doctor, Olivia still doubted herself. She told the ECHO: "I felt a bit of a fraud because I only had pain during intercourse, I don't really have period pain. Everyone thinks endometriosis is painful periods, which it is for a lot of women, but it's not for a large percentage of us. It can be a lot of different symptoms.
"The doctor did an examination, sat me down and he said, 'Look, I really strongly think you have endometriosis, I've seen this a lot'. But they can't guarantee you have it before you have surgery, so he said, 'What do you want to do?', and I said, 'I don't want any medication, I want to have the surgery'.
"It was incredibly emotional, and it still is a really difficult thing to talk about because it was really a traumatic experience for me. I was hugely self-suppressed and I really just downplayed what was really going on.
"When someone actually validated it and said it to me, it was a bit like, 'Oh my god, this is real, this is actually a thing, I can't just keep running away from this now'. Part of me was obviously relieved because I could get this sorted, I'm not going to be in this pain forever. Part of me was terrified."
Options for diagnosing and treating endometriosis are limited. The only way to definitively identify the condition and assess its extent is by inserting a camera into the abdomen through a small incision - a laparoscopy. Treatment includes painkillers to reduce symptoms, hormone treatment to temporarily stop growth by mimicking menopause or pregnancy, or by cutting out the growths during surgery.
Because laparoscopy is the only definitive diagnosis, doctors will often cut out the endometriosis tissue in the same operation, with the patient's consent. When Olivia had the keyhole surgery in September, the results left her "shocked" and her doctor "quite taken aback".
She'd gone in not knowing for certain whether she actually had endometriosis to coming out of theatre five hours later to learn it was "everywhere". The stage four, "deep infiltrating endometriosis" was on her intestines and rectum, her "bowel was all twisted in on itself" and was fused to her bladder and uterus by extensive scar tissue. The doctor had removed it all.
Physically, recovery was only two weeks, but coping with the mental effects has been harder. Olivia was "sobbing" at the thought she "probably could have prevented it spreading that much" if she'd had surgery sooner. She said: "I felt really depressed, and I felt bad about that because I was thinking, there are so many women who'd die to have this surgery, and I'm feeling depressed about it.
"It did take a really big toll, and I would say it's only really now, maybe five or six months later that I'm starting to come to terms with it. Sometimes I still find it difficult to think about, and knowing it can come back in the future is really, really hard. It's not just like I've gone through this and it's done, it could come back whenever it wants."
The endometriosis tissue is gone, but the pain remains, now on near-daily basis instead of being linked to sex. Olivia copes with painkillers, deep-breathing and focusing on the things that make her "incredibly lucky". She said she feels lucky to have had surgery when many don't and the endometriosis hadn't grown in her uterus meaning she still has the option to have children in the future.
Olivia's experience also makes her more understanding when she encounters patients with endometriosis during her medical training, which she hopes will lead to a career in obstetrics and gynaecology. She said: "It gives me a newfound empathy, and I think that's a great thing because, unless you've experienced it, it's incredibly hard to understand how bad it is.
"There's a very bad tendency with a lot of diseases, not just endometriosis, to brush it off - 'It's not serious, it's women overreacting, it can't be that painful, it's not that bad, it's not like you're dying' - and I think that's really damaging."
People are often told painful periods and pain during sex are "a normal part of being a woman, and a lot of women get dismissed and ignored". Olivia wants them to "hang in there", urging them, "Don't do what I do and just turn a blind eye to it, because you know your body and you know something's wrong, and you need to persevere and seek treatment". The future doctor added: "There is light at the end of the tunnel."
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