Adenomyosis, a condition where cells from the lining of the uterus are found within the walls of the uterus, often waits to rear its ugly head during perimenopause. But what exactly is it and why is it more likely to be diagnosed in mid-life asks Aleney de Winter.

Upon checking my calendar, I confirmed that it had been exactly 11 months and 6 days since I stopped the progesterone tablets that had in turn stopped me menstruating. Three weeks and I’d be officially in menopause! Woot.

10 days later I woke up with another familiar ache, this time in my lower back… surely not? I ignored it and went about my happily perimenopausal business, until BAM! I was doubled over with cramps that quickly became so intense and frequent it felt like I was having contractions. And then the floodgates, for want of a better word, opened.  Either I was about to give birth to a demon baby, or my period was back. And with such aggressive intent that it took me a while to be convinced it wasn’t the former.

My rapscallion reproductive system has always been prone to surprises. It started with a couple of miscarriages, followed by a haemorrhage for shits and giggles. Then came a couple of very exciting years where intramural fibroids, submucosal fibroids and polyps came to party in my uterus. This was followed by a side of cervical endometriosis and years of infertility. My visits to the gyno and surgery became so frequent, I’m surprised I wasn’t offered a frequent hysteroscopy card.

Determined to get my recalcitrant lady parts in order, I went on a three-year health kick, followed by several years of IVF and eight distressing rounds of pin the embryo on the uterus. The results were a bruised and battered body that was spectacularly unimpressed with the onslaught of hormones, and two adored children who made every single bit of it worthwhile.

At least to me. My ovaries were a little less impressed with having been turned into a human battery farm and proceeded to spend the next few years getting payback with regular ruptured ovarian cysts. By this stage I was well into my forties, and completely over it, so I shut them down with those miraculous progesterone tablets for several blissful years.

But, with my hormones doing their midlife thing and menopause in the post, I stopped. And that folks was a  big mistake, because that wayward reproductive system of mine decided to get its revenge by going batshit crazy – if you’ll pardon the vernacular.

As soon as the progesterone exited stage left and my oestrogen recommenced its merry hormonal dance, my endometriosis decided to really let its hair down, wrapping its nefarious tendrils around every organ it could reach until my pelvis resembled an after scene from Spiderman. But endo was lonely and wanted more than to bind my uterus, ovaries, bladder and bowel together in painful solidarity. It wanted a friend. So now I’ve welcomed Adenomyosis to my wild pelvic party.

My initial reaction to this diagnosis was an inclination to perform a DIY hysterectomy and reef the lot out, and while a more conservative option of an actual surgeon performing that particular procedure is not yet off the table for me, I instead opted for research.

So, what is adenomyosis?

Adenomyosis is a benign uterine condition involving the endometrial tissue that normally lines the cavity of the uterus and sheds during menstrual periods. Similar but separate to endometriosis (though often occurring in unison), adenomyosis shares some symptoms in common with endometriosis. However, where the cells that line the wall grow outside the womb in endometriosis, adenomyosis sees them grow deep into the muscular wall of the uterus, causing it to thicken. Both conditions see monthly cycles carry on as usual,  generally accompanied by chronic pain, inflammation of the pelvic region and heavy painful bleeding. In the case of adenomyosis it also changes the way the uterine muscles contract, hence my imagined hell spawn.

How is it diagnosed? 

Unfortunately, adenomyosis can be hard to diagnose. While pelvic ultrasound or MRI may be able to detect signs, the only definitive diagnosis of adenomyosis is via pathology after a hysterectomy.

What are the symptoms of adenomyosis?

While occasionally adenomyosis presents with no symptoms or only mild discomfort, it can (and in my case, does) manifest as prolonged and heavy menstrual bleeding, cramping and sharp, knifelike pelvic contractions during menstruation, anaemia and iron deficiency, chronic pelvic pain, enlarged and tender uterus and painful intercourse. Oh, and a high risk of miscarriage, obstetric complications and infertility (15 years too late, the mystery of my own unexplained infertility gets answered).

While these symptoms generally do end with the onset of menopause, women with adenomyosis are at higher risk of endometrial and thyroid cancers.

What causes adenomyosis?

This is a gynaecological mystery worthy of the Scooby Doo crew, so your guess is as good as any. Despite the clinical importance and impact of adenomyosis, doctors still aren’t entirely sure what causes it. However, they do know that there are several circumstances that place a woman at more risk.

Oestrogen – It’s required for adenomyosis to occur, so it is a condition that is only seen during women’s reproductive years.

Age – Adenomyosis can be a literal midlife kick in the guts as most women are likely to be over 40 when they are diagnosed. Though more recent research does suggest the condition may also be common, but undetected, in younger women.

Childbirth – Women with adenomyosis are likely to have given birth as uterine inflammation after childbirth is a suspected trigger.

Uterine surgery – It is thought that endometrial curettage, endometrial ablation, and uterine incisions such as with a Caesarian section can increase the risk of endometrial cells escaping into the wall of the uterus.

Family history – There is some evidence of hereditary occurrence of adenomyosis.

Other pelvic conditions – Adenomyosis often coexists with other gynaecological conditions such as endometriosis and uterine fibroids, polyps, pelvic inflammatory disease (PID), as well as hypothyroidism.

How is adenomyosis treated

There is no sugar coating the fact that, just like diagnosing it, treating adenomyosis remains a challenge. Because without removal of the uterus, it’s impossible to treat the rebellious endometrial tissue that is the root cause, most treatment comes down to managing symptoms. But there’s only so much a couple of Ibuprofen and forging a close relationship with a hot water bottle can achieve.

Drug research and development for adenomyosis has been slow however some new drugs, such as synthetic progestin and selective progesterone receptor modulators (birth control pills or hormone patches) have shown efficacy in reducing the effects of oestrogen, shrinking out-of-control endometrial tissue and reducing pelvic pain and painful periods. 

While minimally invasive surgical techniques like endometrial ablation, myometrial excision, myometrial electrocoagulation, and uterine artery ligation have minimal success in the treatment of adenomyosis, in more serious cases the only definitive treatment in premenopausal and perimenopausal women is hysterectomy.

So, is there any good news?

You bet. Menopause might be seen by some as the enemy, but in the case of adenomyosis it is the hormonal equivalent of a knight on a white horse, as the condition generally disappears once eostrogen levels decline post menopause. For this damsel in uterine distress, that’s both imminent and an enormous relief.

Disclaimer: This article provides general information only, and does not constitute health or medical advice. If you have any concerns regarding your health, seek immediate medical attention.