Robyn talks Adenomyosis in Awareness month

Hello and Happy Adenomyosis Awareness Month!

Some of you may have heard of Adenomyosis, some may not have.

I certainly hadn’t until I was diagnosed on Valentines Day 2018. I know! What a Valentines Day!

I had been diagnosed with Endometriosis via keyhole surgery in 2013 but after 4 years of my symptoms getting progressively worse, my new Consultant (the Wonderfull Di Dinato) suggested an MRI in December of 2017. And.. here we are!

But what IS Adenomyosis?

So… of course, a lot of us are familiar with Endometriosis and what that is - tissue that is similar to but not the same as the endometrium that has implanted and proliferated at various sites throughout the body.

Adenomyosis is where the endometrium invades the myometrium (the muscular wall layers of the uterus). This affects individuals who identify as Assigned Female at Birth (AFAB).

Some studies carried out in the US have found that 40% - 50% of sufferers have also been diagnosed with Endometriosis

Symptoms vary wildly! Often, people are asymptomatic and the condition is diagnosed incidentally or whilst investigating fertility issues. Others may have mild to severe daily symptoms.

There are 3 types of Adenomyosis and these can be diagnosed through MRI and sometimes transvaginal ultrasounds.

The 3 types are:

  • Focal Adenomyosis - this is where lesions are found in one particular spot or area of the Uterus.

  • Adenomynoma is a form of focal Adenomyosis but is much more extensive and can result in benign uterine masses/tumours. These are often similar to uterine fibromas.

  • Diffuse Adenomyosis is spread out throughout the uterus and not confined to a particular area.

Adenomyosis was typically considered more prevalent in women who had born multiple children however in recent years, the disease is becoming far more apparent in young fertile - age women (AFAB) and it is more widely associated with infertility and reproductive failure.

The difficulty with Adenomyosis often lies in the diagnosis as symptoms are similar to that of endometriosis and other gynaecological symptoms such as fibroids.

Common symptoms include:

  • Heavy bleeding both during period and during cycle.

  • Pelvic pressure - Ive likened it to having a bowling ball in my pelvis.

  • Bloating

  • Lower back pain

  • Pain that radiates down into the thighs, groin and legs

  • “Contraction” like pains in pelvis and back

  • Painful intercourse/orgasms

  • Fatigue

  • Headaches

  • Brain Fog

  • Nausea

  • Infertility

I experience EVERY single one of those symptoms.

After so many years of dealing with both Endo and Adeno, I’ve come to understand what condition is causing what - my Endo pain is often sharp, breath taking and acute. My Adeno pain is a heavy, dragging feeling - Ive likened it to gravity being turned up and it makes me nauseous around my period.

Also - what constitutes as heavy bleeding? A wonderful page I follow on Instagram (life_with_adeno) posted this handy guide to determine how ‘normal’ you are.

  • Moon Cups hold 20 - 40mls of blood. You should be able to get 8 - 12 hours of use out of them.

  • Tampons hold 5mls of blood and you should get 3 - 8 hours of use out of them. If you are changing a tampon every few hours, or every hour or even every 30 mins - THATS NOT NORMAL. Don’t let anyone tell you it is.

  • Regular pads hold 5 mls and, like tampons, should be good to go for 3 - 8 hours.

Management of Adenomyosis can be tricky as it depends largely on where you are at - treatment plans may be based around women age, reproductive status and symptoms however, right now there are no specific treatment plans or medication available for Adenomyosis.

Treatment includes hormone therapies such as the contraceptive pill, Mirena coils, anti inflammatory medication, or endometrial ablation.

One of the simplest options is hormone therapy - contraceptive pills, IUD’s such as mirena coils or GnRH medication like Prostap/Zoladex. Of course, none of these are without side effects so always make sure to discuss all options with your Consultant.

Your Consultant/doctor may prescribe anti inflammatory medication for mild pain control.

Endometrial ablation is another option that ‘burns’ the lining of the uterus - this has been found to help those who don’t have deep infiltrating adenomyosis lesions.

Unfortunately, the only real cure for Adenomyosis, is to remove the uterus (a Hysterectomy).

However, a hysterectomy is still not considered a cure for Endometriosis.

Adenomyosis impact on fertility and pregnancy

In recent studies, of infertile women with recurrent pregnancy loss, adenomyosis prevalence is found in 38.2%. It has also been found that the uterine structure as a result of adenomyosis lesions makes contractual motion designed to assist sperm transport as greatly affected, whilst altering receptivity - so basically, our uterus shape and build due to adenomyosis, makes moving sperm hard and accepting fertilised eggs difficult.

Adenomyosis has also been found to increase chances of preterm birth, rates of caesarian sections and postpartum haemorrhage.

There are some brilliant pages on Instagram championing further research for Adenomyosis - a disease that is not uncommon, just not spoken about. Ive found so much information and support from the following pages:

A lot of the information found in this piece has come from the above Warriors and the website

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