Lisa’s story….
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 to why I was experiencing pains in weird places all the time.
In fact, at one of my last GP appointments before the diagnosis, I was informed by my doctor I was probably suffering with indigestion and bowel issues from too much excess over the festive period!
It was a visit to A&E (after suffering crippling pains) that finally gave me the Adenomyosis diagnosis and a gynaecologist appointment (luckily via private health care, as the wait list on NHS can sadly be 1 year or more) a few months later, that indicated I had endometriosis as well (as well ovarian cysts).
I had never even heard of Adenomyosis, yet 1 in 10 women suffer from the condition. I was given the diagnosis and told to see my GP for further support and advice.
I felt completely in the dark and did what we all do, (but shouldn’t) use Dr Google to find out more. It was good to finally get some answers and realise the symptoms I had for years were not in my mind, but actually linked to two quite common female health conditions.
A little about Endometriosis and Adenomyosis…
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 nonsurgically until they enter menopause. Women with severe symptoms tend to need a hysterectomy.
Living with these conditions…
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.
I have noticed over the last 12 months my symptoms have increased and I never know how I will feel from one day to the next. I find this quite a hard emotional toll, as I am a naturally active and outgoing person, but have had to listen to my body and rest/change plans when I don’t feel as well.
Living with conditions like Endometriosis and Adenomyosis can indeed 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 have had points in my life where I was convinced I had a life-threatening illness, as my symptoms were so bad.
We need more workplaces to have a better understanding of these conditions and more flexibility for people living with the symptoms. I feel fortunate to work in a supportive and open work environment and have the opportunity to work from home on days when I am in the most pain.
The future…
I have tried a variety of medications to help, but most have not been suitable for me and ended up causing more issues.
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.
A hysterectomy won’t fully cure the endometriosis and will send me straight to menopause, but the drop in Oestrogen (which causes both conditions to increase and make symptoms worse), should help to stop the growth of Endometriosis. My Adenomyosis will be cured as the uterus will be removed.
It is sad to see so many women, especially young women impacted by these conditions and living life suffering with terrible pains.
There are a few gynaecologists specialising in these conditions and we can only hope over time that with scientific research and more financial investment it enables us to find out how we can best diagnose, manage and hopefully find a cure.
In the meantime, 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.
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.
If you're suffering with one of these conditions or another female gynaecological issue, remember, you're not alone in this journey. There's a community of people who understand and are here to support each other.
But do trust your gut instincts, keep a diary of your symptoms and get a second (or third or fourth opinion), as the symptoms can be easily confused for other women's health conditions.
The more we can talk openly about non-visible health conditions like these, the more we can create more awarenesss and support each other.
Endometriosis and Adenomyosis support in the UK: https://www.endometriosis-uk.org/
