“I was 14 and had just been put on contraception. I had been suffering from acute period pains for quite a while.
“As it was being prescribed, the doctor said this doesn’t mean I can be sexually active, which was particularly embarrassing. I was sat next to my mum and I was just 14.
“It was just diminished as period pains.”
Danielle, from, West Yorkshire, thought she was just one of those people with severe, debilitating period cramps.
It was not until almost two decades later, aged 32, after being prescribed contraceptive pills as a child, that she discovered she had endometriosis.
March marks endometriosis awareness month, a condition which affects 1 in 10 people with uteruses across the UK.
It’s a word that’s as complicated as the condition itself; its causes and treatments are relatively uncharted gynaecological territory. Chronic illnesses are a burden as is, but one that is a medical enigma is a whole other beast to live with.
Danielle’s early adulthood was plagued with bouts of breakthrough bleeding as she struggled with abdominal pains, as well as having to take numerous STI tests.
“Quite frustratingly, all they made me do was take STI tests,” she said.
She estimates she’s done about 20 in total.
“If you’ve got pelvic pain they have to consider you might have an STI, which is fine. But if every time the results are negative, at a point it just gets really exasperating if that’s all you’re told to do.
“It’s not very gracious because you’re being poked and prodded and you just don’t feel very feminine.”
It was not just cramps Danielle had to put up with, but also the psychological ramifications of endometriosis, which she has had to work around all her adult life.
“Because I had brain fog and issues concentrating, it started affecting my work. I was suffering from clinical depression as well.
“It might just be once a month I need a lie in, but once a month is enough to upset the Bradford score. One employer suggested I should retire on an ill health grant, but I don’t need to retire!”
She found that her social life also took a plunge as the symptoms persisted.
“I would make plans, but you get to the night and just can’t face it. After a couple of times, people just stop asking you out. I’m probably going to say no, but it’s always nice to be included.
“Often there is no compassion or understanding in this.”
It was during a routine pap smear that the consultant found abnormal cells.
“I had just turned 30 and had done another smear test. I was told I was fine, but two weeks later I got a letter in the post saying they’d found mutations and I had to go in for surgery.”
Danielle dredges up the traumatic memory of the subsequent biopsy that led to her eventual diagnosis.
“I went in to get the cancerous cells checked and I think the doctor didn’t administer the anaesthetic correctly, or she didn’t give it enough time to act.
“I just remember yelling like a man. I screamed because I could feel it all.”
But that wasn’t all.
“As you’re getting the biopsy you’ve got your cervix on a wide screen on TV. I suddenly hear muttering and it turns out it had stopped working and they had to get a technician in.
“So I’m just laying there with my legs in stirrups as the room starts to fill with men. I had this towel sort of thrown over me – thanks, but do I really need this after being butchered?”
Danielle went on to have a laparoscopy and at last received a concrete diagnosis for the debilitating cramps and chronic fatigue she had been suffering for the past 18 years.
“It was lesions, and they found my pelvic wall and my bowel were completely fused together.
“I think my left ovary had switched to be underneath whatever organ it was supposed to be on top of. It was all a twisted mangled mess.”
“I also had a doctor just randomly offer a hysterectomy at 32. Do they go around offering complimentary sterilisations for men?”
Danielle has noticed that doctors are always quick to bring up kids whenever discussing her condition.
“I don’t think the level of care I receive should be dependent on whether I want kids or not. Asking that implies a sense of non-urgency when the fact is I’m in excruciating pain, can’t function and can’t do my job properly. Doesn’t that come first?”
She had always noticed the left side of her abdomen was slightly larger, almost like a protrusion.
“I didn’t want to be a hypochondriac, but this just proves that you know your anatomy best. If they had just listened to me in the first place when I was 14, it wouldn’t have taken this long.”
Danielle has had two surgeries so far; the lesions returned with increased intensity in the same place after the first operation, so another was necessary.
Despite the surgeries, she had to continue taking the pill to ease the frequent bleeding but ended up switching to a mirena coil over fears of long-term use of pills.
She has learnt to manage her symptoms through her diet, which is largely avoiding foods that used to be a staple.
“I was put on the FODMAP diet, which means I can’t eat any of the delicious things like bread & cheese. It does help, but there are times when nothing seems to do it.”
Although she doesn’t suffer from chronic fatigue anymore, she still gets the occasional nights where she is crouched on the floor with her back to the radiator, hot water bottle on her front, and tears rolling down her face.
Or the evenings when an endo flare strikes, and wearing a tight dress on a date gets her asked if she’s pregnant, simply because of a bloated stomach.
After 25 years of grappling with endometriosis, Danielle has learnt to live with it, and going into lockdown was a steering force in that.
“As we were going into lockdown, I started to reassess my priorities. I needed to find a way of life that was sustainable. I want my metronome to remain stable.”
