‘Doctors ignored my endometriosis symptoms for a decade, blaming my weight or bad periods – I wish they’d have listened’

A young woman who claims her endometriosis symptoms were “ignored” for a decade, with her weight or periods blamed as the cause for her debilitating pain, has said she wishes “someone would have just listened”.

Tehyana Johnson, 22, who lives in Norwich, Norfolk, said her symptoms, which included painful periods and heavy bleeding, blood in her urine, full body pain and vomiting, were consistently dismissed by doctors.

From 2014 onwards, she claims she was “fobbed off” and told her symptoms were due to her weight or “just a bad period”, and she believes she has had more than 250 consultations in the past three years alone.

Tehyana said she self-diagnosed herself with endometriosis – when cells similar to the ones in the lining of the womb are found elsewhere in the body – before receiving her official diagnosis in July 2025.

Although she felt “vindicated” by the diagnosis, Tehyana believes much of this could have been prevented and she is now campaigning for earlier diagnosis for this “invisible” and currently incurable condition.

“I’d been fobbed off for so long and told that this isn’t what’s wrong with me, so when I was diagnosed, I almost felt vindicated because I was right – but I was angry,” Tehyana told PA Real Life.

“I was doing the research into what’s wrong with me and I was right every single time.

“But this is something I’m going to have to live with for the rest of my life because everything we have tried so far hasn’t worked.

According to the charity Endometriosis UK, on average, it takes more than eight years from the first GP visit to get a diagnosis for endometriosis – a condition which affects 176 million women worldwide.

Symptoms of endometriosis vary but can include pelvic pain, painful periods that interfere with everyday life, heavy menstrual bleeding, and pain during or after sex or when urinating.

Tehyana said it took around a decade to receive her official diagnosis, and, along the way, she was consistently dismissed by doctors and healthcare professionals.

She said she started her period aged nine, experienced heavy bleeding and was diagnosed with an iron deficiency, and this was managed by taking iron tablets and eating iron-rich foods.

“I couldn’t move and I’d just curl up into the foetal position,” said Tehyana, who works as a regional assistant for a social care company.

“That would go on for days… but when we went to see the doctors when I was about 14, there was no investigation and they just stuck me on the pill.”

Tehyana said the pill stopped her periods, although she still experienced “phantom pain” and occasional light bleeding, and she required physiotherapy for back pain but was told this was due to “growing pains”.

“I would go to hospital, and they would say, ‘are you sure it’s not just a bad period?’,” she explained.

“They’d tell me to go back to my GP and, effectively, ignore me, and then my GP would say, ‘if your pain is that bad, you need to go to hospital’.”

In 2023, Tehyana said she was finally referred to a gynaecologist, but she was stuck on the waiting list for a year and her symptoms affected her ability to sleep, walk and study.

During this time, she changed GP surgeries and was fortunate to see a locum doctor who recognised the extent of her pain, prescribed codeine for pain management and escalated her referral to urgent.

She said she was instead told her weight was the cause of her symptoms.

“He spent the whole (appointment), telling me it’s because of my weight… and he said to me: ‘Your weight is my ideal weight as a 6ft 5in man’,” she said.

“Trying to explain (my symptoms) to someone who has already decided what he thinks is the answer, he just wasn’t listening.”

She continued: “I wasn’t going into my lessons because I couldn’t get up, I didn’t have any support, so I started Googling my symptoms and looking at WebMD and I came across endometriosis.

“I just thought, wait a second, this is what’s been going on with me for the past 10 years.”

Later in 2024, Tehyana experienced an unplanned pregnancy that became a suspected ectopic pregnancy – when a fertilised egg implants itself outside of the womb – but she said doctors dismissed this, too.

A week later during a private scan, clinicians identified what appeared to be a ruptured ectopic pregnancy, which can be life-threatening, and she was rushed to hospital for further investigations.

It was discovered she had suffered a partial rupture, but Tehyana said the pregnancy later “dissolved” on its own before surgery was needed.

During the year-long wait, however, her symptoms continued to worsen, including severe abdominal pain, nausea, bladder spasms, bowel dysfunction and debilitating sciatica.

“It’s traumatic. I’m on the floor, I’m screaming, crying, and the pain lasts for hours,” she said.

In July 2025, Tehyana finally underwent a diagnostic laparoscopy and, when she woke from surgery, she was informed that endometriosis had been found extensively.

“They said there are lesions which look like they’ve been there for about 15 years, and I’ve got massive scarring on basically everything,” she said.

“At this point, I’m thinking, you’ve left it so long that now there’s not a chance that (treatment) will work.”

Tehyana said she still experiences “flare ups”, but she is pushing for more referrals and says using her TENS machine, which passes a weak electrical current to the nerves, helps ease her pain.

“Always advocate for yourself and fight for yourself… but you’re not alone as there are millions of us with this condition and there are support groups,” she said.

“I’d say to GPs, think about if this was your child or your wife or your partner, you’d want them to be heard.

“Medical professionals need to educate themselves and be willing to be educated again.”

Dr Susanna Unsworth, women’s health expert for Intimina, said: “Too many women are still told that severe period pain is ‘just something they have to live with’.

“But pain that stops you going about your normal daily life is not normal and should always be assessed.

“If your periods are affecting your quality of life, trust your instincts, seek medical advice and keep advocating for yourself.

“Women deserve to be listened to when they say something isn’t right.”

To find out more information, visit www.intimina.com.