Endometriosis’s lesser known sister
Ursula Hirschkorn explains why, after years of painful and unpredictable periods, she was finally diagnosed with adenomyosis
As I was sitting, chatting to one of my son’s teachers during a consultation evening, I felt a familiar, yet dreadful, gushing sensation. I was wearing a thick sanitary towel, but was still terrified that when I got up there would be a telltale pool of blood on the chair. I had thought that by my mid-40s, such monthly mishaps would be a thing of the past – but I had reckoned without adenomyosis.
I have never had an easy time with periods. Since they started when I was 11 years old, they have been unpredictable, arriving at irregular intervals, usually when it was least convenient. The one thing I could rely on was that they would be heavy and so painful that my cramps would wake me up at night. Strong painkillers and a warm hot water bottle were my monthly companions.
I had thought that having children might resolve my problems, but with the arrival of Jacob, now aged 13, and his brothers Max, now 11, and twins Jonah and Zachary, now 8, things became much worse.
I was used to heavy bleeding and pain, but after having the twins at 38, I began to experience flooding, passed clots of blood and suffered from severe cramping. I was almost at the point where I was afraid to leave the house when the bleeding was at its worst.
At the end of my tether, I consulted a gynaecologist – privately, thanks to a medical insurance policy. She was mostly dismissive of the problem, intimating that it was “just one of those things”, but she did order an ultrasound scan. It was this that picked up the little-known condition called adenomyosis.
Like most women, I had never heard of it. It occurs when the lining of the womb, the endometrium, grows into the muscles of the womb. It can affect just one area, or can grow through the whole womb muscle. Although it affects the endometrium, it is not the same as endometriosis, where the lining of the womb grows outside the uterus, for example on the ovaries in the spaces of the pelvis.
While there are no official figures on the incidence of adenomyosis, it is thought to affect one in five women.
It was certainly the reason for my out-of-control monthly bleeding and pain. I was fortunate that I found the cause, though, as adenomyosis is notoriously difficult to diagnose, which leads some to speculate that it could, in fact, affect up to 70 per cent of women.
In the past, the only way to tell if a woman had adenomyosis was when her womb was examined after a hysterectomy. Now, it can be detected by ultrasound, but these are not routinely carried out on the NHS and it still takes an experienced sonographer to spot the condition.
Its cause is equally difficult to pin down. There is some evidence that links it to childbirth, particularly by C-section, and previous abdominal surgery. It is thought to occur more frequently as women get older, usually between the ages of 30 and 50, though it can affect much younger women and may have caused my lifelong problems. It usually resolves after the menopause, when periods stop.
My gynaecologist offered one of the typical first line treatments for adenomyosis – the Mirena coil. This releases progesterone, which thins the lining of the womb and eases heavy bleeding and pain. For many women this really helps, but as I had previously been diagnosed as progesterone-intolerant, which essentially means that this hormone severely affects my mood, I was wary of this option.
She then suggested endometrial ablation, which is the removal of the womb lining, or endometrium. There are several ways to do this, but none cures the condition; rather, they temporarily ease the symptoms.
It soon became clear that nothing I was being offered would actually solve the root problem. Meanwhile, my periods remained a constant cause of anxiety. It’s miserable spending 10 days every month in pain and wondering if you will embarrass yourself with an untimely leak. Low moods are not uncommon in women with adenomyosis. It also plays havoc with your sex life as you are out of action for so long every month. For some women, adenomyosis can also make sex painful. I knew I needed a cure that would free me from this monthly agony for good, but that meant just one thing – a hysterectomy.
I visited a second gynaecologist at The Women’s Health Clinic in Harley Street. Mr Savvas, a consultant at King’s College Hospital and a member of the Menopause Society, counselled that, as my family was complete, this was my best option. “People think of it as the last resort,” he explains, “but if you have had your children, why put up with painful, heavy periods if it’s not necessary? If you have the operation done by keyhole surgery it’s very safe and recovery is quick.”
Despite his reassurances, it’s a big leap to make – not just physically, but emotionally, too. It would mark the end of my fertility and entry into the menopause. To cure adenomyosis, you must have your ovaries removed. If not, you risk residual ovary syndrome, which can continue to cause pain.
Against this was the fact that my quality of life was deeply impacted by adenomyosis and, at 45, I probably faced at least 10 more years of this suffering before a natural menopause. I wasn’t sure my marriage or my sanity would survive if I didn’t do something drastic, so I booked in for surgery.
In May this year, I had total vaginal hysterectomy, whereby my womb, ovaries and cervix were removed via the vagina: this means there were no external wounds, and recovery takes between two and six weeks. My fantastic surgeon, Mr Peter Mason, an expert in gynaecological surgery and a consultant at St Mary’s Hospital in Paddington and the Hammersmith Hospital, told me I had a huge growth of adenomyosis, which explained the severity of my symptoms.
Five weeks later, I was back at work. A hormone implant means that I haven’t suffered any menopausal symptoms. In fact, HRT is much safer after a total hysterectomy as it is only combined HRT, when you take progesterone along with oestrogen to protect the lining of the womb is where there is any suggestion of a link with a raised risk of cancer.
Opting for a hysterectomy is not a choice that anyone makes lightly, but for me it was worth it to escape the pain and suffering of adenomyosis. I am free after years of debilitating periods. As a bonus, I have removed any risk of ovarian, cervical or womb cancer, all of which become more common as you get older.
I feel as if I have been given a new lease of life. It has also convinced me that it is time to stop hushing up “women’s problems”.
Since my diagnosis and operation, many friends have opened up about their own problems with heavy and painful periods, admitting they have never spoken to anyone about them. It is important to realise there are solutions out there, so there is no need for any woman to suffer in silence every month.
Since my diagnosis and op, many friends have opened up about their own problems