Last year, I found out I was living with deep infiltrating endometriosis and adenomyosis, which are frequently described as ‘the evil twin sisters’.
It was a bit of a shock, but a welcome relief after years of gynaecological and bowel issues and no answers as to why I felt so poorly all of the time. In fact, at one of my last GP appointments before the diagnosis, my doctor told me that I was probably suffering with indigestion and bowel issues from too much excess over the festive period.
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. Endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes.
Endometriosis and Adenomyosis are not life-threatening conditions, but both can cause chronic pain and devastating debilitation.
Bloating, nausea, bowel movements, fatigue, heavy periods and dizziness are just some of the symptoms of both of these conditions. Sadly, many women suffer infertility from endometriosis and can have trouble conceiving. There is no cure for endometriosis. In some cases, however, the condition resolves on its own, without treatment. Hormone therapy can slow the progression of the condition and reduce pain, and surgical procedures can lessen pain. But symptoms often recur after these treatments.
Treatments for adenomyosis include hormonal contraceptives, medication and surgery. Some women with mild symptoms choose to manage adenomyosis non-surgically until they enter menopause. Women with severe symptoms tend to need a hysterectomy.
The chronic pain from endometriosis and adenomyosis can interfere with your day-to-day life. It can make you feel depressed, angry, frustrated, and mess with your sleep. When you feel emotional, your pain feels worse, leading to an unending cycle of stress and pain.
Unfortunately, the sad fact is that it usually takes many years for women suffering with these conditions to be diagnosed, which means that it can also take years to access any effective treatment. The waiting list to see a gynaecologist can be more than 12 months for many women.
Living with conditions like endometriosis and adenomyosis can be incredibly challenging. Like myself, the journey to diagnosis is often long and frustrating, with many women experiencing symptoms for years before getting answers. It’s unfortunate that these conditions are not well understood within the medical community, leading to misdiagnosis or dismissals of symptoms.
The physical pain and discomfort are only part of the picture; the emotional toll can be just as significant.
Dealing with chronic pain day in and day out can wear down even the strongest individuals. It’s important for those affected to seek support from healthcare professionals, support groups, friends, and family members who understand and empathise with what they’re going through. I never know what sort of day I’ll have and what symptoms will present themselves.
Advocacy and raising awareness are crucial steps toward improving the lives of those living with endometriosis and adenomyosis. By sharing stories, educating others, and advocating for more research and resources, we can work toward better diagnosis, management and, ultimately, a cure for these conditions.
Meanwhile, finding effective ways to manage symptoms and improve quality of life is key. This might involve a combination of medical treatments, lifestyle changes, and emotional support. And remember, you’re not alone in this journey. There’s a community of people who understand and are here to support each other.
I am now looking at a range of options, but I’ve had my children so a hysterectomy may be the best option for me. Not an easy decision to make though.
There are a few gynaecologists specialising in these health issues. We can only hope that, over time, with scientific research and more financial investment, it enables us to find out how best to diagnose, manage and – hopefully – cure these conditions.
If anything in this article has affected you and you would like to share your experience, please send an email, which will be treated in the strictest confidence, to the Editor of Northern Soul, Helen Nugent, at helennugent@northernsoul.me.uk
