Endometriosis: the dragon and the great taming

I was 18, University, an exciting period of my life. I was moving away from home for the first time, to complete a degree I was told I would never do by some of my teachers at school. I was the first in my family to go away to uni too. Yes ok, I had the odd rough period but it did not bother me. Then, in my second year it all changed. I fell over in pain in my abdomen while in the sociology department. Next month, it happened again, and again. By the time I had completed my industrial year in my third year, I was almost constantly hiding away at least two days per month. In my final year my tutor for medical sociology sent me to my on-site GP, who did a smear and raised his head and said “Endometriosis”. If only he could diagnose that easily.

You see, you need a laparoscopy, an operation where a camera is inserted, and the doctor looks into you to see this lining of a woman’s womb not sitting where it should. In some ladies, this adheres, attachs itself to other organs. Me? Bladder, intestines and the outside of my ovaries. So much for my GP at home saying “Women suffer these things” and seeing me pack off to Surrey. Truth is, they don’t. Endometriosis is survived by 10% of the women on the earth. Does not matter where you live, how you live, who you are, or how sporty you are.

My story goes on, to a junior doctor telling me my blood results are nothing to do with me – yeah I know, and that team failing to control it medically. Some years later I started to work for a gynaecology team. On not telling them about the endometriosis diagnosis, I stupidly was found in my office crying by the consultant surgeon I worked for. After a couple of days off sick after he sent me home, I was moaned at – “Why had I not told him?” I was ashamed and didn’t want the attention. Another two surgeries later, I had a Mirena IUS put in (type of coil contraceptive device), periods stopped. All rosy apart from a few issues now I’m older.

Here’s the technical part): “Endometriosis occurs when cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. These cells can grow and change in response to hormones in the menstrual cycle, this can cause inflammation, pain and scar tissue. Endometriosis is most commonly found on the lining of the pelvis (peritoneum) and may occur in the ovaries and involve other pelvic organs, like the bowel or bladder. Less commonly, endometriosis can also be found outside the pelvis, such as in the chest. Endometriosis affects 1 in 10 women and those assigned female at birth from puberty to menopause, although the impact may be felt for life. In the UK, that’s over 1.5 million from all races and ethnicities living with the condition.” (www.endometriosis-uk.org/what-is-endometriosis)

Symptoms listed by EndoUK as

• Pelvic pain
• Painful periods that interfere with everyday life
• Heavy menstrual bleeding
• Pain during or after sex
• Painful bowel movements/when having a poo
• Pain when urinating/peeing
• Difficulty getting pregnant – up to 70% of those with endometriosis will be able to get pregnant naturally
• Fatigue, with one or more of the above symptoms

Some have surgery at their laparoscopy, others treat it medically. Me? Two years of medically-induced menopause and then years of no periods. I don’t have children because of another unfortunate gynaecological reason but I know some don’t, some can’t. Am I sad about it?  Sometimes. When your sister rubs her having four children in your face, yes, but hubby and I have had a great life so far. He does not want kids, and me? I have a dog who is my wayward child. I’ve since had a gall bladder removal and while it was clear of endometriosis, I did see my surgeon after a problematic operation. Was there any? He smiled and said “No. Many more things but none of that.” Phew.

I know of other women who have had rougher times of it than myself. An old school friend of mine had to sit with her daughter going through this when she was younger – the daughter has had a hysterectomy at a very young age. Others go through life with barely anything. Some just do suffer heavy periods or in others they get something else and endometriosis is incidental.

The end of my story is that in 2000 I graduated from the Uni of Surrey with a 2:1 in Sociology – in 2002 the diagnosis. It is over now, menopause will be the happy time for me again, no more pain from there. Two Masters degrees later, a fantastic career and some exciting times with life. It can strike you down, BUT you can do it.

The Open University is there for you, from menopause to the trials with chronic illnesses. The Disabled Students Group is there for you, to support you through your studies and your conditions. You will always be welcome. We support people with both visible and invisible conditions, disabilities and neurodiversities.

To learn more, please do go to the Endometriosis UK website.

The DSG is to be found on OU Students Connect and the Open SU website.

Thank you for reading,
Clare Charlton, Chair – Disabled Students Group