Endometriosis -  what it is, what it is like to live with and what to look out for

Endometriosis is the second most common gynaecological condition in the UK.

Tuesday, 27th April 2021, 3:24 pm

The Royal College of Obstetricians and Gynaecologists says that it affects one in 10 women out of 100, usually during their reproductive years.

Louise Barnard, 27 from Horsham, has had endometriosis for nine years.

She said: “I was lucky it took me six to eight months to be diagnosed. It takes on average seven and a half years to be told you have it, and it can only be detected by a laparoscopy and sadly at the moment there is no cure. I’ve currently had five operations and I am awaiting my sixth.”

Louise
Louise

On the NHS website it lists the main symptoms as pain in your lower tummy or back (pelvic pain) which is 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 during your period and a difficulty getting pregnant.

For Louise her symptoms include abdominal pain that went across her stomach and lower back, intense cramping and sharp pains, loss of appetite, nausea and fatigue.

Throughout the whole of March Louise has been exercising everyday and walking 10,000 steps to help raise funds and awareness of endometriosis.

She said: “My exercising could be dancing, running, exercising on my Nintendo Switch, Joe Wicks workouts. Anything to get the body moving.

Dr Shree Datta

“The change you can have on raising awareness and money is incredible! It’s not just a month thing I speak up everyday about my condition. I don’t want any girl or woman to feel scared to speak up if something isn’t right. Weather that be painful periods, fatigue, abdominal pain.

“The symptoms can vary but could all link to Endometriosis. All it takes is for someone to share their story for someone to not feel alone, or to make them go to their GP. Awareness is key to spotting signs and to making it be spoken about more.

“The community and support you have now is fantastic and I want people to know this does not define you! It 100 per cent does not define me.”

Dr Shree Datta, is a gynaecologist for INTIMINA, a brand dedicated to women’s intimate well-being and breaking taboos, she sheds light on the disease.

She explains that ‘endometriosis is tissue similar to the endometrial tissue (tissue that normally lines the uterus) that can be found outside the uterus (in the abdomen, ovaries, etc.). There are several theories about why this happens, but none can explain why the cells plant themselves outside the uterus’.

She added: “Living with endometriosis can be very difficult. You could be one of the lucky ones that have asymptomatic endometriosis, so you wander around the world, not even knowing what’s going on inside you because there are no symptoms.

“But you could also experience some symptoms. You may be thinking that these symptoms are pretty typical and that every woman feels at least one of them at some point in life. That is what makes the diagnosis tricky.

“Endometriosis symptoms are everything but specific, so there are many undiagnosed cases, and many women are suffering in silence. Some women experience mild symptoms, but in severe endometriosis, women may also experience pain in between periods and in a minority, it can affect fertility.

“Bear in mind that the severity of your pain may not reflect the severity of your endometriosis.”

Treatments for the condition include: painkillers – such as ibuprofen and paracetamol, hormone medicines and contraceptives – including the combined pill, the contraceptive patch, an intrauterine system (IUS), and medicines called gonadotrophin-releasing hormone (GnRH) analogues, surgery to cut away patches of endometriosis tissue and an operation to remove part or all of the organs affected by endometriosis – such as surgery to remove the womb (hysterectomy).

Louise uses pain medication to manage her symptoms taking co-codamal, anti-sickness tablet, and medication for her bowels.

She said: “On my really high pain days I sadly have to reach for the morphine.

“Endometriosis can be debilitating and the pain takes over when you least expect it, there really can be no warning.

“These all keep my symptoms under control and at bay.

“However I love a bath the heat really helps and targets all those areas, I use cooling pads from a company called BeYou and I hug my hot water bottle! Plenty of rest is key for me, if I need to sleep and spend a weekend on the sofa I will do just that. Listening to your body is so important.”

The NHS states that the cause of endometriosis is not know.

It adds that several theories have been suggested, including: genetics – the condition tends to run in families, and affects people of certain ethnic groups more than others. Retrograde menstruation – when some of the womb lining flows up through the fallopian tubes and embeds itself on the organs of the pelvis, rather than leaving the body as a period. A problem with the immune system, the body’s natural defence against illness and infection, and endometrium cells spreading through the body in the bloodstream or lymphatic system, a series of tubes and glands that form part of the immune system.

‘But none of these theories fully explain why endometriosis happens but it is likely the condition is caused by a combination of different factors.

Louise’s advice for anyone who thinks they may have endometriosis is to go to your GP, write down all the symptoms you have and visit to Endometriosis UK website as well to get some pointers.

She added: “If you don’t feel satisfied keep pushing, even ask for a different GP if you feel this will help.

“While you are doing this there are fantastic women on social media who will have your back.

“A simple click on #endometriosis on Instagram will take you to many women like me. Search Endometriosis on Facebook and you’ll be guided to support groups also.”

“If you are someone who doesn’t know where to go I hope this helps, or if you feel a bit alone I hope you don’t.

“All donations help, you have no idea what a simple sharing of a post, or talking about it to family and friends really does.

“You’ll be surprised who you may know to have it.”

To find out more information, visit Endometriosis UK endometriosis-uk.org

You can donate to Louise's JustGiving page here