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Endometriosis sufferer from Ramsgate tells of 10 years battling condition also affecting Love Island star Molly-Mae Hague

"Imagine the feeling of huge knives being plunged into you and twisted, leaving you unable to move."

It's a brutal description from Jilly-Anne Skinner, from Ramsgate, who for the past 10 years has suffered from debilitating endometriosis, but she says it needs to be heard.

Jilly-Anne Skinner has suffered endometriosis for years
Jilly-Anne Skinner has suffered endometriosis for years

So bad is the unrelenting agony that the 30-year-old is desperate for a hysterectomy - a drastic move, yet one she hopes will allow her to finally live her life.

The condition affects 1.5 million women - one in 10 - in the UK and is caused by tissue similar to the lining of the womb growing in other places, such as the ovaries and fallopian tubes.

As well as causing heavy periods and chronic pelvic and back pain, making it difficult for some women to work or socialise, it causes fatigue, depression and problems conceiving.

Just recently Love Island star Molly-Mae Hague spoke out about her agonising, ongoing experience with it, and an Eastender's storyline earlier this year highlighted its devastating impacts.

But according to charity Endometriosis UK, the average time to get a diagnosis - and therefore treatment - is eight years.

Sadly, for Miss Skinner it was 10.

The supermarket worker says despite contacting her GP multiple times, numerous trips to A&E due to debilitating pain and haemorrhaging, being unable to walk with the agony, weight gain and suicidal thoughts, no one would listen.

"Women are screaming out for help and being ignored, and we don't know why," she said.

"My life is being wrecked by this but it's dismissed as just 'women's problems'.

"I haven't lived the life I wanted to. My 20s should have been care-free, going out and having fun. I haven't done any of it.

"You're living in a prison cell of your own body. You can't control what you look like, what it feels like, what you can and can't do, you can't have relationships because people can't deal with it.

"It controls everything. And the biggest thing is it's not just during your period.

"I have one week every month when I'm not in pain, which is just after my period, but that's it."

Her decade-long battle to be heard finally ended with a diagnosis last year when it was confirmed she had endometriosis and also adenomyosis, when the tissue that normally lines the uterus grows into the muscular wall. She also has polycystic ovary syndrome.

Jilly-Anne Skinner has suffered endometriosis for years
Jilly-Anne Skinner has suffered endometriosis for years

Miss Skinner says her problems started in her teens, but it wasn't until she was 20 when it became unbearable.

"I was getting frustrated that my weight was escalating, even though I'd been seeing a personal trainer, and my periods were getting heavier, the pain was starting to spread to my legs and my back and I had bad migraines and mood swings," she said.

"I went to the GP and was told 'it's still puberty'."

Despite multiple letters to her doctors surgery, her mental health diminishing and pain so severe she was needing time off work, she says she was getting nowhere.

When she was eventually sent to an endocrinologist, she claims she was told she'd "grow out of it".

Seven years ago, after a desperate plea to a specialist at University College London Hospital, she she was diagnosed with polycystic ovaries and told she was unlikely to have children.

But her condition continued to worsen.

"I knew there was something wrong, but still no one would listen," she said.

"I'd go to A&E, taken in by ambulance because I'd collapsed at work because of the pain and heavy bleeding; it's like you're haemorrhaging.

"But when they've done a pregnancy test to check you're not pregnant, you get sent away with a paracetamol and told to exercise and lose weight.

"I felt I was being blamed, like I was in control of this."

Finally, in October, after years of pushing, she was diagnosed and a hysteroscopy in May showed just how severe it was.

"The surgeon held my hand and said she can't believe I've had to live like this for so long," she said.

"That's the biggest thing for me, someone saying it's not your fault. That they finally believe me."

Love Island star Molly-Mae Hague has spoken of her battle with endometriosis
Love Island star Molly-Mae Hague has spoken of her battle with endometriosis

Miss Skinner says due to her diagnosis it is even more unlikely she will conceive and even if she does, she won't be able to carry a child because of the adenomyosis.

She says she was offered to have a coil to help relieve the symptoms, but is now waiting for a consultation to have a hormonal device fitted in her uterus instead.

But she admits all she wants is a hysterectomy.

"I've been asking for one for about eight years," she said.

"Why keep something in my body which doesn't work and has ruined the last decade of my life?

"All I'm being told by the NHS is you're too young, there are other options, and 'what if you meet a man who wants children' because there's maybe a 2% chance of me being able to have them.

"The cruel thing about endometriosis is you can't have children, but you'll bloat to look like you're six months pregnant. You've got stretchmarks, but you haven't had children."

"I've had enough - I want to live my life..."

Miss Skinner says she believes people are fobbed off by GPs by being given a pill or told you'll "grow out of it".

"You get no support, no pain relief and it's almost as though we're not allowed to talk about it," she said.

"It's the expense too; I spend £30 a month on sanitary products, £20 on prescriptions and you're not allowed sanitary items on the NHS for heavy bleeding and haemorrhaging because its nothing to do with maternity or incontinence."

Miss Skinner, who set up a government petition to raise more awareness, says her next appointment has been delayed due to her not being a priority, and she fears it will be years before she can have a hysterectomy.

"They have to try other things first, like the hormonal device, but I don't understand why - it's just more years of living in agony.

"I have told the NHS I can't mentally do this any more. Over the past 10 years god knows how many times I've been suicidal.

"I've had enough - I want to live my life. I can sing, I want to be on the stage; I've been told I've got the talent to do it, but I can't bear people looking at me."

To pay for private treatment could cost as much as £10,000 for a hysterectomy.

In recent years there has been an increasing amount of awareness about endometriosis.

Love Island star Molly-Mae Hague talks about her endometriosis battle - watch from 21 minutes

In 2019, an inquiry was launched after 13,500 women took part in BBC research revealing the devastating impacts of the condition.

Half said they had had suicidal thoughts, and many said they rely on highly addictive painkillers.

Most said their education, career and relationships had been affected.

Two weeks ago, in a YouTube video, Love Island's Molly-Mae Hague admitted she was "brushed off" by doctors after years of pain and symptoms of endometriosis.

"My period pains are to the point where I literally can’t stand up," she said. "I’m in unbearable pain, I’ve had to take time off work."

The 22-year-old is due to undergo surgery after seeing a specialist and finally being diagnosed.

In March, the condition was also part of a storyline in hit BBC soap EastEnders when character Ruby Allen suffered miscarriages caused by the condition.

Producers worked with Endometriosis UK on the storyline.

The charity says the condition is chronic and often so debilitating that it can impact a person’s life in numerous ways, including pelvic pain, painful irregular periods, bowel and bladder-related problems, painful sex, depression and infertility.

"Not only can the disease worsen if it goes untreated, but the condition can also have a huge impact on someone’s career, relationships and mental health," a spokesman said.

This month, supporters and sufferers are taking part in the Walk for Endo 2021 to raise funds for the charity by walking 8km to represent the eight years it takes to diagnose.

Kent and Medway Clinical Commissioning Group has been asked for a response.

To find out more bout the charity walk, click here.

To sign Miss Skinner's petition click here.

To keep up-to-date with all the latest developments with your local hospitals and other health stories, click here.

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