March 3 2020
Endometriosis affects 1 in 10 women worldwide and can affect women of any age. It is a condition where tissue like that in the womb starts to develop in other parts of the body, such as the fallopian tubes and ovaries. It affects different women in different ways – a woman with a mild form of endometriosis might experience excruciating pain, whereas another with a chronic form of the disease may experience heavy bleeding but little pain.
For Lauren, her experience of endometriosis started at a young age. She said: “When I was younger I experienced painful menstrual cramps and as I have got older, they have become worse. My cycle lasted for around two weeks every month, and I relied on iron tablets and strong pain relief to get me through each day. When I was younger I never heard of endometriosis – I thought my symptoms and pain were normal.”
After five years of visiting her GP with increasingly severe symptoms, she was referred for a gynaecology appointment. Lauren said: “I was listed for a diagnostic laparoscopy (a keyhole procedure to see what was wrong) and they found endometriosis in my uterus, which was excised.
“However, a few months later I found myself back to square one. I was sent back to see the gynaecologist and was told that they would not perform another laparoscopy for five years and that they thought my pain was bowel-related – a colonoscopy revealed that this was not the case.”
Lauren started to believe that the pain was in her mind, and she admits to reaching “a low point in my life.” She said: “I went to my GP and was referred to an endometriosis clinic. The consultant there was wonderful and listed me for another laparoscopy. This time they found endometriosis on both ovaries, my cervix, Pouch of Douglas (between my bottom and the back of the uterus) and my bowel, and this was all successfully removed.”
She added: “They also found adenomyosis deeply set in my uterus. This is when the inner lining of the uterus breaks through its muscle wall. This is inoperable until I decide have a hysterectomy. I now have a lovely nurse who contacts me fortnightly, and I am under a midwifery team who will help me when I plan to have a family.”
Endometriosis has had and is having a profound effect on Lauren’s quality of life and everyday living. She said: “I have to be careful about what I wear due to random haemorrhaging. I have to take slow-release tramadol, tranexamic acid and paracetamol, and weekends away and holidays can be a chore with the amount of stuff I have to take.
“Too much exertion can cause me pelvic pain, so I am limited to certain exercises and cannot take our two dogs on long walks as I would like to do. Most days off are spent at the endometriosis clinic visiting my consultant and midwifery team.”
Lauren added: “The medication causes hormone imbalance. I suffer with acne outbreaks which affect my confidence, along with mood swings, random outbursts of tears (slightly embarrassing at times) and severe bloating. I find myself wanting to stay at home a lot and not wanting to be away from my comfort zone. This has meant that I have lost a lot of friends over the years. The condition has put a strain on my relationship and has led to a lot of absence from work.”
Lauren is determined that her experience should contribute to a greater awareness of endometriosis and encourage more women to seek medical attention. She will be using Endometriosis Awareness Month to work with colleagues at Shepton Mallet Treatment Centre on an awareness display and fundraising. She has also offered to talk to anyone with similar issues.
For women looking for advice, Lauren suggested: “If you are experiencing pain and/or heavy bleeding, be persistent. I felt like I was turned away so many times. If the gynaecologist you see does not wish to perform a laparoscopy, ask for a second opinion. If I hadn’t, I would still have endometriosis in a number of places. Endometriosis is a disease, and in a lot of cases a hysterectomy won’t cure it. Just because it’s invisible, it does not mean that people are not in pain.”
Prolonged and/or heavy periods
Pain when going to the lavatory
Pain during and after sex
Pain in your lower back or abdomen which is worse during your period
Period pain which is so bad it affects your everyday life
Feeling sick, diarrhoea, constipation or blood in your urine during your period
Difficulty getting pregnant
Over-the-counter painkillers like paracetamol and ibuprofen
Hormone medicines and contraceptives
Surgery to remove endometriosis tissue
The removal of affected organs of the body, such as a hysterectomy to remove the womb