‘I had a rare and extremely painful period where the uterine lining shed in one intact piece the size of my palm’

A 29-year-old woman who waited almost half her life for an endometriosis diagnosis has described one particular “rare and extremely painful” period where the uterine lining shed in one intact piece the size of her “palm” rather than gradually.

On the day that Katie Rogers, a project planner from Lancashire, experienced what she now knows was a decidual cast in late 2023, she said her head was “absolutely pounding” and she had searing pain in her back throughout the day. It was not until she was halfway through a workout at the gym that she felt a “really sharp pinging pain” in her uterus.

Katie said she only realised where the pain came from when she got home and saw that she had “shed a piece” of her uterine lining, which was “absolutely terrifying”. Decidual casts are made up of tissue, mucus and blood, often looking something like a piece of raw red meat.

“I remember speaking to my mum and she was like, ‘Oh my God, that looks like a baby’,” Katie told PA Real Life.

“I thought, ‘Well, surely not. I’ve been on contraception. There’s no way that I could be pregnant’.”

After ringing her GP and being told they would be closing soon, Katie rushed to A&E.

By the time she spoke to a medical professional around midnight, she said she had an internal examination before the doctor told her that everything looked “normal”.

Katie said of the decidual cast: “It’s just something that can happen, but it’s not very well-known about, which is why you’re just in complete shock.”

Katie said the incident is the catalyst to why she started “making a fuss” to health professionals and sought a diagnosis of endometriosis, as she had been experiencing “debilitating” periods from the age of 15.

Citing excessive heavy bleeding, large clots, pain radiating down her back and into her legs, and frequent spotting between periods, Katie said she started taking the pill at 15 to help ease the symptoms.

By her early 20s, she said she had been to doctors to discuss the pain she was in, but they said her symptoms were “normal”, her blood test results were “fine” and “everything’s coming back as it should be”.

“All of the pain that I’m feeling is still very real,” she said of her emotions at that time. “It’s still debilitating. It affects my life. I have to cancel plans. I have to take time off work.”

Katie said she came off the pill at 22 to try to manage her health holistically by focusing on “going to the gym and eating well”, which is when she noticed her menstrual symptoms “really ramping up”.

As a result, Katie said she started using an app called Clue to track her cycle and symptoms, which is how she noticed some of her periods were lasting up to two weeks, while periods typically last around two to seven days.

She said: “You can track when your period starts, how you’re feeling, spotting, feelings, pain, your sex life, how your energy is, even down to what you’re craving.

“So if you go to a GP appointment and you say you’ve been struggling with period pain or spotting, (they might ask) ‘how long has it been going on for?’ They like to have a really substantial diary of when these things are happening and how long they happen for,” Katie added, explaining that she had accumulated notes over several years.

On top of the “debilitating” physical symptoms, she said she “really struggled mentally”, with “bad mood swings” and “really deep depression episodes” every month, which prompted her to discuss it with her GP at 26 in late 2023, who advised her to go back on the pill.

Shortly afterwards, she experienced her decidual cast, which according to the Cleveland Clinic may happen as a result of the contraceptive pill.

Katie described what happened next: “This made me even more adamant that I need to go and get checked out properly. So I went to the GP again, and I just kept pushing for a gynaecology referral.”

Katie had an ultrasound and MRI, which came back normal, then she pushed for a laparoscopy and a hysteroscopy, which are minimally invasive gynaecological procedures used to diagnose and treat pelvic and uterine conditions.

It was during this “one or two hour” surgery in which Katie was put under general anaesthetic that she said doctors discovered and removed stage 1 endometriosis.

She said: “I just remember waking up after my surgery and speaking to the nurse, who said ‘they found it and they’ve taken it off’ and I just burst into tears because it wasn’t all in my head.

“It was just very overwhelming because I’ve got the answers, but at the same time, I’ve got this condition for life. There’s no cure, but you can have surgery and have some (endometriosis) removed. It’s always there lingering, though,” she said.

Katie said she was off work for more than a month and her recovery was “a lot more difficult” than she expected it to be. She said her constant pain was “a lot better straight away”, despite being in “so much pain” during her first period after the surgery.

“I’m a lot better now,” she said. “But there is one week that I’ve just got to not make any social plans, really wind it down at work, and make sure I’m not completely overwhelmed because I know that I’m going to be completely debilitated for that week.

“So it’s just making sure that I’m setting those boundaries with myself and trying not to overdo it as much as I’d used to. I need to find that balance now.”

In March last year, Katie said she was happy to get her ADHD diagnosis, and now she shares her experience of ADHD and endometriosis – and the impact they have on her life – on TikTok @katiesadhdbrain.

On the wait she’s endured for her endometriosis diagnosis, Katie said: “It’s just that numbing feeling, like something could have been done. I’m 30 this year, so it’s taken 15 years of really pushing to be listened to.

“You’ve really got to make a case. You’ve got to go in with a full notebook just to be taken seriously.

“I just think there’s so many other women like me that have always been told ‘your period’s normal’ when it’s not OK to not be listened to and made to feel so invalidated.

“I hope I can get a better control over it and hopefully one day there is some sort of cure, but I do feel like there are more and more people speaking out about it, which is only positive. I just want to start spreading as much awareness as I can,” she said.

You can follow Katie on TikTok: https://www.tiktok.com/@katiesadhdbrain