'It's like a heart attack in the stomach,' says Kirkham mum with endometriosis

"You can't physically see it but it's like a heart attack in the stomach."

Monday, 2nd March 2020, 5:00 pm
Updated Monday, 2nd March 2020, 7:54 pm
Kirkam mum Toni Rutledge, who hasendometriosis, is pictured at a friend's wedding five months after having a hysterectomy.

That is the level of pain experienced by Kirkam mum Toni Hampton, who has an invisible illness called endometriosis.

But despite its devastating impact on her work, relationships, mental health and fertility, this long-term condition is often misunderstood, misdiagnosed and reduced to "women's problems".

Toni, who began having irregular and severely painful periods from the age of 10, said: "I was in excruciating pain and couldn't walk. But people would say, 'It's just period pain; take a paracetamol,' like I was soft."

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In endometriosis, tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. It can cause pain in the tummy or pelvis, during or after sex, or when peeing or pooing during your period. Symptoms can also include feeling sick, constipation, diarrhoea, heavy periods, difficulty falling pregnant, or blood in your pee during your period.

Toni (34), who works in the civil service, was just 13 when she was first put on the pill, which completely stopped her periods. The pain persisted and four years later, doctors tested her blood, and hormone levels - to little avail. But what she did discover, aged just 17, was that having children without any medical intervention, like IVF, would be almost impossible.

Off the pill, she was in and out of hospital with extreme pain and "horrific" bleeding, and at 20, she was tried on numerous medications.

And that is when the impossible happened. In 2005, Toni was left in complete surprise when she discovered she was pregnant with her son, who she calls "a miracle baby".

But her troubles were far from over. A year after giving birth, she was back in hospital after collapsing due to six weeks of bleeding. Back home, she was prescribed Tramadol during a long wait for a pain management appointment, and took so many painkillers that people would ask her mum if she was addicted to them.

"And still people would say, 'It's women's problems.' But this was horrific. I'd have bad flare ups and go to A&E in agony, only to be told to go home. I was made to feel like a burden," said Toni.

"I'd be vomiting and couldn't walk. But people don't always understand. You can't physically see it but it's like a heart attack in the stomach.

"I felt I was not being listened to and eventually I began to think it was all in own head. I even questioned if I was going mad.

"I was told to go on an 800-calorie-a-day diet and lose weight but even at size 10, I still had the same problems."

Toni tried different contraception - the pill, an implant, injections and a coil - but nothing worked. She finally saw a specialist in 2014, who diagnosed her with polycystic ovary syndrome (PCOS), a common condition that affects how a woman's ovaries work. Symptoms include irregular periods or none at all, difficulty getting pregnant, excessive hair growth, weight gain, thinning hair, and oily skin or acne.

But it did not provide all the answers, and Toni pushed for a further assessment. Following an MRI scan, she was then diagnosed with endometriosis in 2016, approximately 15 years after she first began experiencing symptoms. The mum-of-one also has type two diabetes due to her hormone levels being erratic for so long.

Aged 30, she was put into temporary artificial menopause to help manage her pain. It was a traumatic event that rocked both her mental health and relationship with her partner.

Toni, who suffered four miscarriages after trying for more children, said: "I started to think I was defective because, as a woman, my body was not doing what it was supposed to do.

"It took a lot for me to get to grips with my friends having kids. I questioned why my body couldn't do that."

In 2018, aged 32, Toni was left with a difficult decision - either remain in pain for longer, or have a full hysterectomy. This surgical procedure removes the womb (uterus) and is more common for women aged 40 to 50.

She chose the latter.

"They took everything," said Tony.

"But I don't regret it. I have the odd twinge from scar tissue but I'm now mainly pain-free."

What remains however, is mental anguish.

She now takes four types of medication, including anti-depressants, as her hormone levels have become chaotic, causing mood swings. She also suffers from brain fog, resulting from her operations.

Toni, who has joined an online support group hosted by charity Endometriosis UK, said: "There are lots of women fighting similar battles. It's a daily pain and rips everything up - but because we're women, we have to crack on with it."

For more information about the condition and to find out about support groups near you, please visit https://endometriosis-uk.org/