A GLASGOW woman suffering from endometriosis has spoken of her 17-year struggle with the condition.

Brittnee Leysen, 28, a PhD student at Glasgow University, has been dealing with the effects of endometriosis since she was 11 – but was not properly diagnosed until four years ago.

As March marks Endometriosis Action Month, Brittnee feels that a lack of knowledge or understanding of endometriosis has caused this significant delay.

She said: “I first started dealing with quite severe periods at 11, which was quite rough to go through with other kids. My mum also has endometriosis, so she clocked on that something was wrong.”

Brittnee’s other symptoms included pelvic pain, excessive bleeding, vomiting, and brain fog.

Many women also experience pain during or after sex, painful bowel movements or pain when urinating, difficulty getting pregnant and fatigue.

Brittnee continued: “My mum took me to the doctors, and they said that maybe things will balance out when I’m older. When I was 14 a doctor put me on the pill and told me that should help but it just masks the symptoms.

“At 18 I was still having continuous bleeding so I was put on the coil and the doctor told me it would cure endometriosis.”

There is no current cure for endometriosis which, according to Endometriosis UK, is down to an historic lack of research.

Brittnee was on the coil until she was 22 when she was hospitalised after suffering a severe cyst rupture.

Cyst ruptures are a common symptom of endometriosis, and before she was properly diagnosed Brittnee would have them every other month. This often resulted in her being unable to walk.

Glasgow Times: Brittnee LeysenBrittnee Leysen

But despite being hospitalised numerous times for cyst ruptures, Brittnee would not receive laparoscopy surgery – a procedure that diagnoses endometriosis – until two years later, and even this did not work.

She said: “I was initially referred to general gynae, but they aren’t trained in how to spot endometriosis.

“I have spoken to many women who have dealt with the same thing - no photos taken, no biopsy, one incision made when there is supposed to be a minimum of three to check the womb, ovaries, and bladder.  

“They woke me up after the surgery and said: ‘We didn’t find anything, it’s probably irritable bowel syndrome.’”

While Brittnee was frustrated at this process, she was thankful for her GP who had her referred to a specialist six months later.

She said: “At my next surgery they apologised for the bogus operation – there was endometriosis everywhere. I have it around my womb, ovaries, bladder and possibly my bowel.”

She added: “I feel that with endometriosis, general gynae aren’t really being trained to spot it and follow the guidelines of diagnosing properly.

“Many women don’t get surgery when referred to a general gynae, and if they do, they aren’t even trained in how to look for it.”

To date, Brittnee has had three excision surgeries since her diagnosis, as the endometriosis spread to other areas of her body.

After the third operation, she was told after that her left ovary had adhesed to her womb.

She said: “I’ve had to pay to freeze my eggs, as the NHS does not recognise endometriosis as a fertility-affecting condition. It has definitely affected me financially.”

Despite enduring persistent symptoms, three operations and financial strain, Brittnee is in a much better position now and wants to use her experience to help those in a similar situation.

She said: “I volunteer with Endo UK and chat to other women because I know how much it helped me to know that other people are going through things that feel unusual and strange.

“I’m getting by much better than I used to - surgery has helped with day-to-day life. I still get cysts and still have pain during my periods but it’s nowhere near as bad as before my surgeries.

“But it does feel like I’m on borrowed time when I’m not in pain; I have to make the most of being pain-free.”

According to Endometriosis UK, 1 in 10 women suffer from endometriosis from puberty to menopause, with some feeling the effects for their entire life, and it takes an average of eight years to be diagnosed.

However, a poll has also shown an increase in medical professionals being able to identify it, with 31% of men and 75% of women doing so this year, up from 25% and 66% last year.

Emma Cox, CEO of Endometriosis UK, said: “We hear a lot of stories from those with endometriosis who were told as a teenager that having excruciating pelvic pain and periods was ‘just part of being a woman’ and to put up with it, that they were being overdramatic, that the pain was all in their head, or their level of pain not believed.

“As awareness and understanding of endometriosis grows, we hope comments like these can be consigned to history – while many may experience period pain at some point, chronic pelvic pain and period pains that interfere way of everyday life are different and should not be seen as normal.

“Awareness is increasing thanks to the dedication of thousands of Endometriosis UK’s supporters and campaigners. But it’s not increasing fast enough. During Endometriosis Action Month, we’re urging those experiencing symptoms of endometriosis to take action and contact their doctor, so they can get the support and treatment they need.”

For more information visit www.endometriosis-uk.org.