Endometriosis: I'm a 30 year old woman with a taboo illness - people need to know it's not just a "bad period"

Ever since Sarah Gardner got her first period aged 10, life has been a struggle.

Sarah, from Walton-le-Dale, is one of millions of women in the UK to suffer from the illness endometriosis, and in the prevailing 20 years, the condition has affected her in just about every way possible.

What is endometriosis?

Endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus. It can cause severe pain in the pelvis and make it harder to get pregnant.

Sarah, 30, says she bleeds "all month, every month", a procedure to remove some of the lining ended up puncturing her bowel, she's been on morphine since a teenager, has developed osteoporosis and now walks with a stick, is unable to work, has fibromyalgia, suffers from migraines, anxiety, and has fertility problems.

After being told the condtion was "all in your head", she's determined to use her experiences to help other women, and is leading a support group for people across Lancashire. 

Sarah's story

When Sarah started her periods, she said she knew something wasn't right. Despite suffering from heavy blood loss, agonising pain, being sick and missing school, she said she was constantly told she "needed to get used to having a period", and her concerns were dismissed.

She said: "When I got to 12/13, I thought 'I can't do this anymore', and went to the doctors, but they said the same thing to me." Eventually, at 13, Sarah's GP prescribed her the contraceptive pill, which she said was "massive", as she was not sexually active and the issues were not properly explained. This treatment didn't work, and at times, Sarah's pain became so unbearable that ambulances were called.

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At the age of 14, Sarah began to conduct her own research online, and believed she might have endometriosis. She said: "I'd say to health professionals 'I think I've got this', and they'd say 'Nope. You just can't deal with this because of your mental health'. I remember sat, crying with my mum and dad, saying 'please believe me'."

Sarah and her family pushed for scans and internal examinations, which didn't reveal anything of concern. She said: "By this point, I was missing school and it was having such an impact because I was sitting my GCSEs. One of the exams I just couldn't take because of the pain and had to apply for exceptional circumstances." Around this age, at 16, Sarah pleaded for an operation to determine whether she had endometriosis - which doctors and her parents were "dubious" about - but at the age of 17, it took place.

She said: "As soon as I came round they told me I had endometriosis. All I could think of was, why did nobody believe me?" That proceedure was only to diagnose the condition, and separate laparoscopy surgery took place a short time later. Sadly, during the operation, Sarah's bowel was perforated, leading to life-long additional problems.

She said: "It broke me. Ever since I've had horrible problems with my bowels. I used to have a good appetitte, but now I'm constantly constipated, I suffer excruciating pain, and my weight has dropped to seven stone." Sarah says surgeons were reluctant to carry out any further work following her bowel puncture, but four years later she underwent a further laparoscopy, where it was discovered that several of her internal organs had adhered together in an "awful jigsaw".

She is now waiting on her sixth laparoscopy. In the meantime, treatment to tackle the issue has included the contraceptive pill putting her into an induced menopause. Sarah has been on that medication for so long that it's lead to osteoporosis and after a few falls, she now walks with a stick. She said: "This has caused so many problems - bladder, bowel, pain, I get really bad fatigue, I get midline pain now which means I've been dignosed with fibromyalgia. This issue, which people said was all in my head, it's turned massive. It's caused so many problems and not enough people know about it."

Sarah's illness meant she had to give up her dream of primary school teaching and hasn't worked at all since 2015. Sarah says not many people she comes across are aware of what endometriosis is, and if they are, there is a perception that people with the illness are lazy, or they're looking for attention. She said: "Endometriosis isn't visible which is why people don't end up believing you. A broken arm is visible so everyone sympathises for you whereas this isn't visible so I think that's where the taboo is from. People need to understand not every disability is visible and this is a disability not just a bad period." While now with an understanding and supportive partner, Sarah said her condition has lead to the break down of past relationships, and has been told she will find it difficult to have children. She's already had miscarriages but says she can't give up hope, and is now waiting to hear about options for fertility treatment.

Support group

Sarah is now leading an Endometriosis UK support group in Preston, which aims to help women from across Lancashire. She said: "I've wanted to do this for years. A lot of people have to fight for a diagnosis, get it, and then are sent away to do their own research. That hurts, because that's what's happened to me."

Click here for the Facebook support group

It takes place at Brew and Bake, Bishopgate, Preston, from 11am to 1pm on the second Saturday of every month. There is a private room for women, and people can sit and listen or participate as much as they want. There are currently around 600 members currently on the Facebook group. 

Some of the words members have used to describe the condition are: debilitating, soul-destroying, exhausting, draining, and a never-ending circle.

 Message to others

Sarah said: "My message would be to ladies who think they have it or are fighting to get a diagnosis or those who have endometriosis is you know your own body so never give up fighting the battle to get the right treatment or the diagnosis. I didn't even though i was being told it was in my head and I'm so glad I didn't give up."

She added: "The one thing that is so hard is the fact there is no cure and we get rold we hsve endometriosis and then we are just expected to just get on with it and learn to live with it. This awful condition needs fo be spoken about more and become more well known. All these taboos need to stop. Many doctors themselves are misinformed like they were with me. 

"Most women feel they are forced into a culture of silence with their bodies and menstrual cycle and this needs to stop. We shouldn't be silenced. We should be allowed to speak about our own bodies without feeling ashamed or embarrassed which is one reason I'm speaking out."

Symptoms

Some common symptoms of endometriosis are:

• pain in your lower tummy or back (pelvic pain) – usually worse during your period
• period pain that stops you doing your normal activities
• pain during or after sex
• pain when peeing or pooing during your period
• feeling sick, constipation, diarrhoea, or blood in your pee or poo during your period
• difficulty getting pregnant

You may also have heavy periods. You might use lots of pads or tampons, or you may bleed through to your clothes.

For more information, visit the NHS website here or Endometriosis UK here.