A HIDDEN EPIDEMIC

Elaine Ellis wants to set up a support group with her husband Kevin Ellis for people like herself, with a condition called endometriosis.
Elaine Ellis wants to set up a support group with her husband Kevin Ellis for people like herself, with a condition called endometriosis.
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ELAINE Ellis is hoping she can help others.

Others who have been or are going through similar problems to her.

The 41-year-old, from Layton, is hoping to set up a support group and a phone line for local people with fertility or gynaecological problems.

Elaine has her own experience after being diagnosed with endometriosis in 2011.

It took around nine years of incorrect diagnoses and arguments with GPs and doctors for her to finally be told this was the problem and begin treatment.

She has had to have surgery three times to try to treat the condition, which can lead to infertility or miscarriage, adhesions (where the pelvic organs become stuck together) and increased risk of some types of cancer.

Elaine, a former social worker who is currently studying for a post-graduate qualification in psychology at UCLan, said: “I want to publicise this illness, as there seems to be so little knowledge, awareness and understanding about it.

“I think part of the problem is the British are scared of talking about embarrassing things like sex and fertility problems and so on.

“Many people are unaware of the effects and lots of employers are completely ignorant as to how it can affect staff.

“I’d like to set up a service to cater for all people with fertility or gynaecological problems, and their partners, across the Fylde coast. I’m happy to take calls Monday and Friday between 1 and 5pm.

“They can phone for advice, I can send them information in the post or by email, or just to even let off steam.

“It took ages for me to be referred to a gynaecological specialist at Blackpool Victoria Hospital, this did not happen until 2006.

“By 2010, my husband Kevin and I had become so exasperated we demanded a second opinion.

“My experiences are not unusual – on average in the UK, it takes eight years to diagnose endometriosis.

“Gynaecological and fertility complaints are not immediately obvious. The person with them usually looks fit and healthy on the outside.”

Elaine’s symptoms - which included bloating, water retention, spots, pelvic and lower back pain, fatigue and later nausea and upset stomach – got worse and worse over the years.

Misdiagnoses included polycystic ovaries, menorrhagia and dysmenorrhoea, irritable bowel, stress and possible food intolerance.

Elaine said: “Since diagnosis, I have remained in some pain, taking painkillers like tramadol, ibuprofen and when pain it as its worst, diclofenac and morphine. I’ve had several visits to A&E in pain, most recently earlier this month.

“I am waiting for physiotherapy and at my next appointment I may have to decide between hormone treatment to induce premature menopause, or a hysterectomy.

“If I wanted children, it is likely I would need IVF.”

Elaine has set up an e-petition to try to raise awareness overall among the public and calling for better training of medical specialists.

To sign the e-petition, log on to http://.epetitions.direct.gov.uk/petitions/34684.

To get in touch with Elaine, call (01253) 392874 between 1 and 5pm on Mondays or Fridays.