My endometriosis and adenomyosis
I have been living with endometriosis and adenomyosis since I was a teenager. I’ve had severe pains since my first periods. When I was younger, I just thought I was unlucky and that I was given the burden of bad periods. I remember being 13, crying in agony, I couldn’t move and almost couldn’t breathe when the severe pains hit. That happened every single month, year after year. During my life, I’ve visited countless doctors and gynaecologists, waited for my turn in the ER, pleaded and cried for someone to help me. I’ve taken incredible amounts of painkillers, hormones, medicines and supplements to ease the pain just a little bit. I’ve tried opioids and medical menopause, but nothing took the pain away, I did get a little ease, but not enough.
When I was younger, my pains lasted for a few days a month. As years went by, the pains got worse and I ended up having pains for 3 weeks in a month, every month. I was on sick leave quite often from my jobs. Some employers understood that I really was sick, some didn’t. It took too many years for me to get diagnosed, and unfortunately that’s very common with endometriosis. Of course I knew something was wrong with me, but I was able to find a more understanding doctor only when I was 29. I was sent to a laparoscopic surgery at a fast pace and I was diagnosed. I had another laparoscopic surgery a couple of years later and endometriosis growth was removed in both surgeries. I didn’t really find help from the surgeries- my pains were back right away. Even knowing what I had, it was impossible to find anything that helped and would help me. I studied, I looked everywhere for articles on endometriosis and what could be done.
I decided to be my own doctor, I listened to myself, listened to my body and decided to trust my intuition. I suspected that the kind of pains I had could be caused by adenomyosis. I was right and got my answers from my pathology report after a full hysterectomy. It was my choice, but then I didn’t really have a choice. It was either the choice to live with a menopause and hopefully less pain, or live in agonising pains and lose my happiness and hope. My hysterectomy didn’t cure me of endometriosis, there is no cure. I will live with it and it either wakes up or it doesn’t. This is what I have and I just have to live with it. Either endometriosis keeps sleeping in my body, or it wakes up, feeds itself and spreads around. Endometriosis has been found almost all parts of the body, including brains and lungs. In a way I see endometriosis similar to cancer, how it can spread around. Endometriosis doesn’t kill, but it can. Its side-effects can do huge damage to the body. There are also too many people who can’t take it anymore and see suicide as the only option.
Endemetriosis and adenomyosis are horrible, debilitating , disgusting, sad, painful, angry, rude and evil illnesses.
What does pain feel like?
In my case, pain caused by endometriosis and adenomyosis had many forms. My pain was always focused in my abdomen. My uterus was cramping, the pain was stabbing, burning, it felt like something was inside me, stabbing me with a sharp knife from inside. It felt horrible. On some days the pain was small nabbing and pulling, those were good days. The worst days with pain, I couldn’t move, I couldn’t speak, even breathing was difficult. All I could do was to lay down in a fetal position and cry. And usually the pain was so intense I was kind of knocked out from the pain, since I fell asleep quite easily when I had the extreme pains. And when you have those horrific pains year after another, it affects your life in every possible way. When my pains started to flare up three weeks in a row, letting me rest a bit for a week in a month, it really did affect me a lot. I am quite sure I smiled less, I laughed less, I was more negative and I was quite in a slow-motion mode. The worst pain days I felt like my head exploded, like a parts of my thoughts were shattered into million peaces. And every time it was more and more difficult to gather those shattered thoughts and pieces.
I asked my two friends with endometriosis to describe their pain.
Friend 1’s description of pain and illness:
“Getting used to chronic illness wasn’t a shock for me, as it can be for many others, but it was a surprise to have severe pains and it hasn’t been easy to live with the pain. Friendships suffer, if pain is constant and it prevents normal life. It seems like young and healthy people have difficulties understanding it. It was very close that I had to leave work life because of my pains.
I enjoy solving problems and I tried to find solutions in my own case. It was frustrating to find out that there weren’t any methods to ease the pain sufficiently. No one had researched the mechanisms or treatment options. It felt like living in the middle ages when looking at the treatment options. Nowadays my situations is good and I cope really well, but I have sacrificed a lot in life to get into this situation. “
Friend 2’s description of pain and illness:
“My pain is sharp, burning or stabbing. Sometimes pain is an annoying feeling in the background, sometimes pain makes me gasp for breath and breathe deep. Sometimes pain is a disabling experience, during which I can’t do anything and can’t think of anything else than the pain.
Pain means that something in my body isn’t as it’s supposed to be. I think often about how I could learn to live better with it, that pain never goes away for good. When I think about it, I am able to be quite ok with that pain is part of my life. I am able to cope with the pain. But pain can surface quite unpredicted and I need to change my plans often because of pain. “
Incurable illness
Before I got diagnosed with endometriosis, I thought I will get better one day, that someone will find a cure for me, that it’ll all go away and I’d be better. Living with an illness that has no cure is quite a ride. It’s difficult to explain how it feels and trying to get others to understand what it is. I’ve cried so many times, because of the pain I’ve been in, and thinking that this is it, I’m stuck with this evil illness and there’s no way to remove it from my body. At the same time I look quite healthy, no-one suspects that I live with an illness. That’s contradictory.
It takes time to accept the idea that there is no cure, that you are stuck with it. And that in some cases, it can kill, or its side-trails can kill. To be able to cope with this, I’ve done a lot of self-reflection, but also seeked professional help to learn coping methods. I can’t fight it and I’ve learned to accept it, this is what I have and I need to live with this. I’ve also learned to respect and cherish the times when I’m ok, even a little bit ok. Sometimes I feel angry, frustrated and sad. But I have decided not to give up. I’m not afraid to die, I’ve come to accept it as a part of life and living.
As I’ve come to accept things, I have become more relaxed and taking life as it comes. I won’t make too much plans for the future, I rather go with the flow. And I try to live in the moment, since I won’t know what tomorrow brings. I’ve done an amazing amount of reflecting and living with my illness has given me understanding for many things in this life. And I listen to myself carefully, I listen to my body and how it’s feeling. I respect myself as I am. I can’t choose the illness I have, but I can choose how I cope with it. I don’t want to hold back, I want to live life to the fullest, now.
