I thought my heavy, painful periods were normal

Up to half of women with endometriosis – where tissue can grow over the ovaries and fallopian tubes as well as other organs – are affected by fertility issues. Around one in ten women in the UK have the condition and symptoms vary but can include: painful, heavy or irregular periods; pain during or after sex; painful bowel movements; fatigue and infertility. Its symptoms are similar to other conditions, meaning it can take years to get a definitive diagnosis – recent research suggests it can take an average of 7.5 years.

Dr Thanos Papathanasiou, Bourn Hall’s Medical Director, says that part of the problem is that the symptoms are similar to other conditions such as irritable bowel syndrome and GPs are not familiar with endometriosis:

“A fertility specialist like myself sees many women with Endometriosis as it is a common cause of infertility, but a definitive diagnosis requires laparoscopy with keyhole surgery so a GP would try and eliminate other conditions first.  However, endometriosis is a progressive condition so being aware of the options at an early stage can help to improve the chances of a successful pregnancy.

“Although there is no cure, women with severe endometriosis symptoms may benefit from surgery to scrape the tissue away. This needs complicated and delicate hospital surgery which can sometimes result in long-term damage to their tubes and ovaries. It is important that women are informed before such a procedure that they have the option to freeze their eggs, which would preserve their fertility should they want children in the future.”

Heavy painful periods and PMT

When Susie was 32 she was given emergency surgery for an ectopic pregnancy and one of her fallopian tubes was removed. She remembers:  “When I had the ectopic pregnancy we hadn’t even been trying to get pregnant as our relationship was still in its early stages, so after that we just decided to see what happened naturally,” she says.

Two years after they started trying to conceive Susie was still not pregnant. She still remembers the feelings of frustration: “Pregnancy seemed just out of reach and every month with no success felt awful,” she says. “I suffer with PMT and often convinced myself the symptoms were the early signs of pregnancy. I would dream about it, ask myself ‘is this is?’ When my period came I would always be in a lot of pain for the first day or two and I would feel deflated.”

Susie went to see her GP, who referred her for tests at the hospital. A dye test and laparoscopy established that Susie had endometriosis and that cells from the lining of her womb were growing outside of it, which was resulting in abdominal pain and bleeding.

“The tissue which had been growing was removed and that helped to alleviate my heavy painful periods, in fact I noticed the difference straightaway,” says Susie. “The doctors said that my level of severity of endometriosis was moderate but that it was enough to be affecting my chances of getting pregnant naturally.”

Susie and Rob were told that they were entitled to NHS-funded IVF.

“I wasn’t convinced that I wanted to have IVF,” admits Susie. “ Rob eventually persuaded me to go along to a seminar at Bourn Hall Clinic and I instantly felt really at ease there so we decided to go ahead with IVF.”

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