I’ve spoken already about the issues surrounding the lack of knowledge and awareness of the general public when it comes to endometriosis. This is (slowly) starting to change. Organisations worldwide have helped to bring endo into the public consciousness. I see interviews with doctors and endo sufferers on television, events engaging our political leaders on social media and it is more and more common for someone to recognise the name of the disease when they ask what is wrong with you.
We still have a long way to go, but in this post I want to discuss a condition which even less is known about and fewer people still, know what it is. This disease is often seen in people who also have endo, and those without. It causes a lot of the same symptoms, including pelvic pain, painful periods, heavy bleeding and bowel pain to name but a few. It is estimated by the NHS that approximately 1 in 10 people suffer with this disease and you’ll notice this is a similar number to those affected with endo. This disease is called adenomyosis. If you haven’t heard of it, you’re not the only one. I hadn’t until 6 months ago.
Adenomyosis is where the endometrium (the cells from the lining of the womb) is found in the muscle wall of the uterus. Very little is known about what causes this disease, in fact it is likely many women who have adenomyosis don’t know they have it. Current data shows that although women of any age can suffer with it it is more common among women between the ages of 40-50 (Guys and St Thomas NHS Foundation trust. 2017). This is a little misleading in my view however, as the only way to definitively diagnose adenomyosis is via a hysterectomy and histopathology. Meaning you are far more likely to be diagnosed with adeno at this age but this bares no weight on how many people actually have this disease undiagnosed and untreated. It can sometimes be diagnosed by transvirginal ultrasound or MRI however again this is still not a definitive diagnosis and for many ultrasound and MRI results come back negative.
The reason i’m writing about adenomyosis is because April is in fact adenomyosis awareness month. I love the amount of activity that surrounds endo awareness month, and I know many people do suffer with both illnesses but adeno is a completely different beast to endo in spite of its similarities. It deserves its own time to be discussed. No, the people who suffer with it, deserve this. Surgery isn’t an option unless you’re ready for a hysterectomy. Leaving mostly hormonal treatment, for example the hormonal IUD (the mirena coil), either the combined oral contraceptive pill or the progesterone only pill. There are other treatments that can sometimes give relief to symptoms but youre limited if you still want to maintain your fertility.
Following my third and last surgery, my consultant discussed the possibility of adeno with me. My uterus appeared enlarged. Actually I think the word he used was “bulky”. Cheers mate. So busy thinking everywhere else was a little too bulky forgot about my bloody uterus. I don’t know for sure if I have adenomyosis, my next steps I suppose would be yet another ultrasound and perhaps an MRI. I’m currently trying to gauge how much relief if any my last endo excision surgery has given me. I don’t feel hormonal therapy is an option for me right now as over the years i’ve found the pill and IUD to be pretty ineffective. To be faced with the boogeyman which is a hysterectomy as a potential treatment option is a lot to handle. I never thought this would be something that needed to be considered at 26 but there you go. I don’t really like to overly discuss hysterectomies in general on here, as it’s so often thought to be a viable treatment for endometriosis when it really isn’t, but for adeno April (catchy? no?) i’ll make an exception.
So this month (and please all the months) lets try and make ourselves more aware of adenomyosis, how it often relates to endo sufferers and how it often doesn’t. Anyone struggling with endo or adeno, whether its confirmed or not, whether its debilitating or not and if you like to talk about it or not, I see you.
Guys! If you want more information here’s some links to sites that have really helped me out and I hope they do the same for you.
https://www.pelvicpain.org.uk/ A registered charity that advocates for those with pelvic pain. Regardless of the course.
https://www.adenomyosisadviceassociation.org/ A site with information and support that was set up by Danielle after struggling with adenomyosis untreated for many years.