April is Adenomyosis Awareness Month

April is adenomyosis awareness month. Until I was diagnosed with this condition I had no idea that it even existed, yet according to the gynaecologist who diagnosed me, approximately ten percent of people with uteruses of childbearing age have signs of adenomyosis on ultrasound. Many cases are asymptomatic, so often people will go through life without it ever being picked up.

What is adenomyosis?

Adenomyosis (ad-uh-no-my-O-sis) occurs when the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus. The displaced tissue continues to act normally — thickening, breaking down and bleeding — during each menstrual cycle. An enlarged uterus and painful, heavy periods can result. My doctor described it as the evil cousin of endometriosis, where the uterine lining grows outside of the uterus.

How is it diagnosed?

Characteristics of adenomyosis can be found on transvaginal ultrasound scan. It can also be visualised on MRI, but the only definitive way to diagnose is via pathology of the uterus following hysterectomy. My diagnosis was made based on symptoms and ultrasound with a gynaecologist.

Symptoms

A lot of people report heavy menstrual bleeding and often irregular spotting, many people report pelvic pain and it can also cause the uterus to become enlarged. There are many symptoms that can be lined to adenomyosis, but people often don’t experience all of them.

My Story

I have had heavy, painful periods since I started having them when I was twelve. I first visited the doctor about then when I was around fourteen and was told that I had “PMS” and that I should google it. Ironically this was the same doctor that misdiagnosed my mum’s ovarian cancer, but that’s another story for another day. I went back to my regular doctor a few weeks later and he arranged an ultrasound. I was told I “probably” have polycystic ovarian syndrome and was put on the pill. My periods were better on the pill, but I started getting migraines and came off it, the bleeding started again and I was sent for another scan. The result was “normal”. My periods continued as they were – very heavy and very painful – and every time I visited the doctor I was told variations of “it’s normal” and “they can’t be that bad.” I have a vivid memory of being maybe sixteen or seventeen and just howling in pain in the car. My mum was on the verge of calling an ambulance as I just couldn’t cope with it. A few hours in bed with a hot water bottle and various meds made it bearable, but then the dizzy spells would follow me for the days afterwards. My GP did bloods. Normal. I had another scan. Normal.

When I was twenty three I started getting pains low in the left side of my abdomen, I was back to the GP three or four times before anybody did anything, and at that point I suspect it was only because I told the doctor that my mother had passed as a result of ovarian cancer. Another scan. Another “normal” result. “Just take painkillers for the pain”.

When I got pregnant for the first time, a scan at the early pregnancy unit around when I miscarried showed an “arcuate” uterus. This is classed as a benign abnormality in the shape of the uterus. It essentially means that it’s mildly heart shaped, rather than being smooth across the top. I asked my doctor if this could have been the reason I miscarried and was told no. It was just “one of those things”.

Everything was relatively calm until Eden was almost three. My periods were better than they had been, but still irregular and heavy. The lower right hand side pain came back.it was like having a balloon in my pelvis and any time I moved or tried to turn around, it hurt more. I went to the GP and almost went through the ceiling when she pressed on my stomach. She sent me straight to accident and emergency with a letter in order for it to be investigated as a priority. They did bloods, which were normal. I was booked in for a scan the next day. That scan was by far the most painful scan I’ve ever had. I was shaking with it. I was working in maternity at the time and asked for one of our gynaecologist consultants to have a look at my results. She said it was fine but my uterine lining was a bit thick and she wanted a rescan after my next period. My periods chose that moment to disappear entirely. I went almost sixty days without a period, and when it did turn up it was horrendous. There was one day where I had to go home from work because I bled through my clothes. Then I had my scan. The lining was normal, but between the gynaecology consultant and my GP, I managed to get a gynaecology referral in order to try and get this sorted.

That cycle lasted over a hundred days. I’d only just had my period by the time my clinic appointment came around and it had been the worst yet. I’d just started a new job, as well, which made it extra awkward. I was scanned by a gynaecologist at the clinic and straight away she spotted the adenomyosis, suddenly, I had context, I asked how it comes about and she said there are lots of ways. Often it happens when the placenta detaches after having a baby, but it can also happen after trauma or it can also be something that you’re just born with. It was recommended that I had the mirena coil. They also prescribed tranexamic acid.

Up until now, I’ve declined the coil as the idea just freaks me out. I haven’t needed it, though, because the tranexamic acid tablets have my periods under control. They’re still not very regular (probably due to the PCOS that was also officially diagnosed at my appointment) but they are under control as tranexamic acid slows the bleeding. That tablet has been a life changer for me, honestly.

It absolutely boggles my brain that it took almost TWENTY YEARS of having periods before I was investigated properly. I had never even been referred to gynaecology before this point. I’d just been told “it’s normal” repeatedly. I’m trying to not go on a rant about women’s pain not being taken seriously, but it was incredibly validating to have a medical professional FINALLY give context to why everyone else was seemingly sailing through their period and yet I was wearing night pads and bleeding through clothes. It could have been a contributor to my infertility and miscarriage. Things that could have been avoided had someone listened earlier and taken appropriate action.

It’s not normal. It’s benign. But it’s not normal.

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4 Responses to April is Adenomyosis Awareness Month

  1. Mamalife says:

    I am sorry you had to endure so much to get diagonised! Every body deserves a Dr who is willing to listen and not overrule our concerns. Am glad you finally know whats been bothering and a plan of action, too!

    • Unfortunately I see it echoed worldwide. It’s HARD for women to get diagnosed with gynae issues. Hopefully it will get better.

      • Mamalife says:

        I cannot speak for the world, but it doesnt happen in India. The reason is its always paid out of pocket, and you can get 100 opinions from doctors till you get an answer.
        What happened to you, is more of a social medical system- 100% sure it could happen in Canada as well.

      • Most definitely. But I’ve also heard the same from friends in the US. It’s also an issue with the attitude of some doctors.

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