What is Adenomyosis?

A personal account about menstrual health and a condition I knew nothing about until a year ago.

Not long ago I went to the GP complaining of painful periods. I was a bit self-conscious about going because I know a lot of women get pain, and worse than I do. But I booked the appointment and mostly because the pain had changed. I was getting ovulation pains for the first time ever and my cramps had shifted towards the end of my menstruation. I thought it seemed strange.

Beautiful Illustration by Designs by Duvet Days

After I got over the “It’s probably nothing” feeling I started thinking - How come I’m encouraged to go to the GP if the shape of a mole changes but not if my cycle does? I have a family history of various gynaecological issues but apparently the blemishes on my skin pose a higher risk? To me that doesn’t make sense.

On the wary advice of my mother I arrived at the GP (a male doctor) with a period diary.

What pain I experienced on X day at X time for X long. The doctor said:

“It’s completely normal. If it’s cyclical pain, it’s related to your period.”

I mean state the bloody obvious.

I asked the Dr what I would have needed to say to him in order to convince him something was awry. It might be cyclical but there’s plenty of conditions related to menstruation that are cyclical, Endometriosis for one and it’s not like I've ever been to a gynaecologist, so how did he know it was normal? Our exchange went as follows.

-“What do you want from me” he said

-“I don’t know, an examination, a scan, a referral?”

-“Do you want to go on the contraceptive pill”

-“No, I don’t want to go on daily hormonal medication, I’ve spent years coming off it.”

-“Well I can recommend paracetamol for the pain”

-“That won’t touch the sides mate.”

After standing my ground I got a referral to the hospital for an ultrasound examination. At the hospital, the nurse conducting the scan saw some abnormalities in my womb. I relayed my condescending experience at the doctor's surgery to the nurse and she started to get angry. She told me she’d personally handled 3 originally misdiagnosed cases from general practitioners that month. One of whom was a patient initially treated for depression who actually had cervical cancer.

In any case, as a result of the scan I was diagnosed with a condition called Adenomyosis. Which I’d never heard of, it doesn’t even have its own page on the NHS. Recently I’ve been trying to find out some more about it.

According to the Mayo clinic:

“Adenomyosis 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 results”

And it looks like this:

Apparently, no one really knows what causes it but it normally resolves past menopause. Which I don’t find the least bit comforting. It in itself is not overtly harmful but can cause chronic discomfort and risk during operations (like C sections) and childbirth. It can also develop into other conditions such as a distended uterus or pose greater risk of endometrial and thyroid cancers.

What I felt it was important to say is: We should be wary of saying pain is normal just because it's cyclical. I'm sure there are many patients with conditions worse than mine being overlooked.

Ffion Harman