“I was informed that I had adenomyosis, a condition I had never previously heard of.”

At the age of 24, I was informed that I had adenomyosis, a condition I had never previously heard of. Until this point, I had suffered 11 years of extremely painful periods and irritable bowel syndrome (IBS), but in the year leading up to my diagnosis, I also suffered from recurrent bladder problems and urinary tract infections (UTIs). After all other avenues of investigation were exhausted, I was finally referred to a gynaecologist who arranged a transvaginal ultrasound and MRI scan with a specialist.

To understand more, I googled “adenomyosis.” The explanation was that blood gets trapped in the wall of the womb, resulting in a hard and enlarged uterus. As such, adenomyosis is often considered to be the ‘evil sister’ of endometriosis. Beyond this, very little reliable information and resources were out there about the condition.

The appearance of adenomyosis can be very subtle and nuanced, therefore those without specific training can easily miss it. I had two ultrasounds in the space of 4 weeks. The first said that I was absolutely fine aside from some “swelling.” The second said I had extensive, diffuse adenomyosis. Delays in diagnosis are furthered by the fact that the condition and symptoms differ from woman to woman.

I am most affected by severe period and ovulation pain, sudden and dramatic bloating, lower abdominal pressure, back pain and leg pain. On the fertility front, I am in no man’s land. I want children one day, but am not financially nor mentally ready to raise a child as of yet. Unanswerable questions hang like a cloud over my head about my fertility prospects which unsurprisingly have an immeasurable impact on my mental health. As it stands, there is no way of my knowing. My fertility might be absolutely fine, it might not be fine at all, or it might be somewhere in-between. All I know is that I will not know where I fall upon that spectrum until I try.

“Unanswerable questions hang like a cloud over my head about my fertility prospects which unsurprisingly have an immeasurable impact on my mental health.”

Treatment

No treatment is “one size fits all.” For many women, the Mirena coil is the holy grail of treatments, whilst for me, it exacerbated the problems and even caused new ones.

I’m currently trialing my latest personal cocktail of medications, which is a combination of the mini-pill Cerazette and Naproxen tablets for the pain. Alongside these, I also make sure to try alternative remedies to ease pain. As a former gym bunny, I’ve now learnt that any intense workouts hugely exacerbate my problems and swelling. Now, I practice yoga on the days when pain doesn’t interfere with movement and I have an ever-increasing collection of at least 6 hot water bottles for the days that it does. If I’m out or want a break from heat (which is important to prevent skin damage), I use a TENS machine which also helps dull the pain. To date, I have not found a perfect solution and I do, on some days, live through considerable pain.

“Accepting the diagnosis is actually only the very first step, there’s then acceptance and acknowledgement that a personal solution will take time.”

The key is accepting that the diagnosis is actually only the very first step, there’s then acceptance and acknowledgement that a personal solution will take time and finally that there are days you simply have to be gentle with yourself both physically and mentally. It’s an uphill battle, and learning to live with a chronic condition is mentally straining, but the key is a sense of humour, a sense of perspective and support from those around you. One day, there’ll also be more treatment options and more cures. We live in hope!

Expert Opinion

Adenomyosis is a pain for patients and often really difficult to diagnose and treat. Sadly, the delay in Rosy’s diagnosis is often common. Women who don’t get a good explanation for their symptoms should persist by asking questions of their doctors. Clinicians should be more aware of adenomyosis.

Nevertheless, making a diagnosis is hard. Even experienced sonographers and gynaecologists may not be able to see it on ultrasound. Scan features are subtle and can be easily missed unless the scan operator is looking for adenomyosis.

ISUOG, the International Society of Professionals in Ultrasound for Obstetrics and Gynecology describe four ultrasound features which may suggest adenomyosis. Enlarged uterus, fan shaped shadowing, myometrial cysts and a poorly defined border between the myometrium and endometrium.

Adenomyosis is spots of endometriosis within the wall of the womb. Often the conditions go hand in hand with women having both.

Treatments include pain-killers, hormones or surgery. Hormone treatment can include the pill, Mirena coil or injections, however these are all contraceptive so no good for women trying to conceive. Hormones work by suppressing the bleeding and inflammation within the womb. Ultimately, the only way to get rid of it is to remove the womb and and the only cure is hysterectomy.

For women with adenomyosis, simply getting a diagnosis, acknowledging the condition and learning what treatments works for her own body can really help.

Sources

High-quality information is in short supply but here is a link to a resource from The International Society of Ultrasound in Obstetrics & Gynecology.

ISUOG adenomyosis presentation for clinicians