'My endometriosis was discovered after I had a hysterectomy'

‘Bleeding cyst wrapped around right ovary – removed; blasted four spots of endometriosis on left ovary – still functioning, not removed; one fallopian tube stuck to cervix possibly due to previous endometriosis; no endometriosis in bowel; womb and cervix removed.”

It was a lot to take in – I had never considered that I had endometriosis so was surprised when the consultant read through his surgery notes with me at my post-hysterectomy check-up. I typed them quickly into my phone, but it wasn’t until later that I had a chance to consider what it all meant.

At 41 years old, I had suffered for almost three decades from heavy periods, with menstruation lasting eight days each month. I used to envy my friends who casually commented that their periods lasted two days and that they hardly noticed they had them. Oh to have it so easy. But despite knowing that not everybody suffered like me, I somehow decided early on that periods were just another unfair aspect of being a girl/woman, and I quietly learned to circle the dates on the calendar, praying that the next period wouldn’t coincide with a big night out, weekend away, romantic break or sleepover in a friend’s house.

At a routine smear test in my early 20s, the nurse mentioned I had a retroverted uterus, but said it was fairly common and nothing to worry about. I went on the pill around the same time and although it regularised my cycle and worked effectively as a contraceptive, my periods remained heavy and continued to last seven or eight days. And I still suffered from pre-menstrual cramps and lower back pain. Looking back, I can see that there were two main reasons why I didn’t seek medical help sooner. I didn’t think there was anything wrong with me apart from being unlucky – I had internalised the belief that ‘women’s problems’ were to be endured and whispered about rather than openly discussed, so I felt that I should just get on with it. And the other reason was that I had another health problem which consumed a large amount of my time and head space.

I was diagnosed with Irritable Bowel Syndrome (IBS) when I was 21 and the huge negative impact it had on my physical and mental health overshadowed all other medical issues. Over the years, I tried the traditional medical route to no avail, followed by every alternative method I could think of – elimination diets (several times), homoeopathy drops, hypnotherapy cds, probiotics (several kinds). I read all the books, endured the invasive procedures and scans, cut out dairy, wheat, corn, onions, beans etc. I would convince myself each time I tried a new remedy that this would be the one to turn my life around, but it was always followed by crushing disappointment. Nothing cured my symptoms.

About six years ago, I reached a low ebb. Completely worn out with two to three hours of every single day affected by IBS, I decided to pursue the traditional medical route again. I found a different gastro consultant who sent me for more scans and tests – but, amazingly, after 25 years of IBS, nothing showed up on my bowel, apart from very minor scarring. I was astounded and dejected. If there was no cause, how could I be cured?

I was referred to a dietitian and followed a low-fodmap diet, which helped a little with the bloating but had no impact on my debilitating and energy-draining morning routine. Having reached the end of the road with that consultant, I mentioned that I had a retroverted womb and wondered could that be causing my IBS symptoms.

I was referred to a gynaecologist and although he wasn’t sure if there was a link between my IBS symptoms and my tilted womb, he was very concerned about the excessive bleeding, throbbing pains in my pelvis and crippling lower back ache – the ailments I had just put up with for years. When he examined me, he was surprised at how far back my womb was and, combined with my other symptoms, recommended a hysterectomy. I was a little surprised but didn’t hesitate in agreeing to the operation.

After my third child was born, I had considered the Mirena coil or going back on the pill to remedy the heavy bleeding and irregular cycle, but after looking up the side effects, I decided not to go with either option. But for the previous few months before seeing the gynaecologist, the bleeding had become excessively heavier.

One evening, I was passing so many clots of blood, I was convinced I was haemorrhaging. They were thick in consistency, like pieces of raw liver, and it seemed every time I left the bathroom, I had to rush back in to pass even more. I was very worried. I called my husband home from work and went to the A&E department of the nearest hospital. I spent the next four hours rushing in and out of the toilet, with my large supply of night-time sanitary towels dwindling rapidly. By the time I saw the nurses, it was the early hours of the morning and I realised I wasn’t dying – this was just the worst period of my life.

The last period before my hysterectomy was similar, but this time I knew not to panic. Instead, I was extremely relieved that I never again would have to go through the humiliation of dashing into bathrooms, buying multiple packs of night-time pads to get me through the first few days of my period, stashing pads in handbags and concealing them in coat pockets, as well as the pain that crippled me for several days each month.

The hysterectomy was a major operation and I had a few complications, which meant I was off work for four months. It was at the post-operation consultation that endometriosis was first mentioned. I had read articles about it, but because they always mentioned infertility and I had conceived three children, I never imagined I could have it.

But when I looked up the symptoms of endometriosis, so many of them mirrored my own – painful periods, pelvic pain and cramping several days before the period began, along with excessive bleeding. So with pre-menstrual pains and cramps, combined with the actual period, it meant at least 10 days a month were consumed by pain and discomfort.

At times it felt like my life centred around checking calendars, buying supplies, wearing dark underwear and washing out blood-stained sheets and the mortification that accompanied it if staying in other people’s houses. And that was combined with the throbbing jolts of pain in my pelvis and severe lower back pain several days each month while attending work events, football matches, doing school runs, cooking, cleaning and everything else that a working parent has to do.

It’s almost four years since my hysterectomy and it was one of the best decisions I ever made. Unfortunately, it had no impact on my IBS symptoms, but it did alleviate a huge source of pain and discomfort. I just wish I hadn’t suffered in silence for so many years.

For more information, see endometriosis.ie

 

FACT FILE

Endometriosis is a common condition where pieces of tissue from the inner lining of the uterus become implanted elsewhere outside of the womb. They can appear on the ovaries, fallopian tubes, lining of the abdomen, and around the bladder and bowel. These cells react to the menstrual cycle each month and also bleed. The symptoms are chronic pain in your lower stomach or back; strong period pains; heavy periods; pain after or during intercourse; difficulty getting pregnant; fatigue; depression. Treatments include hormone medicines and contraceptives; surgery – to remove parts of the endometriosis tissue; an operation to remove parts of the organs affected.

Dr Bart Kuczera, a fertility specialist with Beacon CARE Fertility in Dublin

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