The Journey to 'Understanding'

By Kyle Williams

What is endometriosis, endo, or as my partner and I call it “the angry gremlin”? This is a tough question for anyone who doesn’t have endo. It can be even harder for men to wrap our heads around as we don’t even share the relative anatomy affected. We have no concept of what a normal period feels like, let alone imagine what a painful one is like. There has been many times in which my pain stricken partner has sobbed in my arms saying “but you just don’t understand, you don’t understand the pain in which I am going through”. The first time she said this to me I tried to comfort her saying “I get it babe, I understand you are in pain”. However the more I thought about this concept of “understanding” I thought to myself why am I saying that I understand… I don’t. The next time my partner said to me “but you don’t understand” I said “no… I don’t, but I am trying to”. So what can we, as partners, do to “understand”? It can be a long and hard road to understanding, a road that I don’t actually believe ends, but a road both you and your partner need to travel.

My endo story with my partner started very early in our relationship. My partner had been diagnosed with endometriosis prior to our relationship starting. She had told me of her struggles with endometriosis from the very early days of the relationship. I’m not going to lie, I had never heard of endometriosis and I had no clue of how it affects the women who have it. After my partner had explained to me about the condition, and a sneaky google search to find out more, I felt like I had a good grasp of what endo was and the symptoms. Spoiler alert, I was wrong. What wasn’t mentioned in this quick google search was all the minor aggravating factors that evoke pain, the sleepless night from uncontrollable tummy spasms, or the emotionally stressful and draining nature of this debilitating condition. It wasn’t until my partner moved in with me that I started to learn about some of these symptoms which are so common for endometriosis sufferers.

So if it is so common, which I now know it is why didn’t this come up in my initial search? Now in complete openness my information was gained from ‘Mayo Clinic’ and ‘Better Health Channel’. If I had done more reading on sights I have since learnt about (endo support groups/pages) I may have found more personal stories about what other women had been through and how endometriosis affects their day to day life. This isn’t me taking a dig at those types of general information medical sites, I think they are great and have used them many times throughout my studies. If anything it made me think, why isn’t the mental side of this condition and the restricting nature discussed more across medical platforms. However this started to become more apparent to me the more I began to learn about endometriosis. The most obvious reason I can see as to why it’s not well recorded is that it varies so much from woman to woman.

Not only does the pain an endometriosis sufferer face change from individual to individual, but from what I have seen, but from one day to the next my partner may have a completely different symptom/pain. I have sat in with my partner on GP appointments, gynaecological appointments, and pelvic physio information sessions just to name a few. I have been in the emergence room with my partner and witnessed doctors say she just needs to toughen up with the pain. I have personally been accused of hitting my partner as she slept to cause unknown bruising on her abdomen. I have seen her pumped with pain killers to stop the pain and told to go home when it wasn’t even the pain that brought her to the hospital in the first place. I feel these daily changes in pain mentioned may be what can make it hard for the specialist to come with a diagnosis. Now I know that not everyone would want this, but my partner is very happy for me to sit in on her doctor appointments. From this I see my partner talk to her doctor about her symptoms, and yes she tells the doctor what pain she has currently or recently but I often notice her not mentioning pains or symptoms she has had over the past few months. I guess it is hard with pain as the current pain is always the worse pain. If the pain is no longer there why bother? Why bring it up? Because all you want to focus on is the pain that is present in a hope that you can get rid of that pain, not the ‘old’ pain.

So back to this ‘understanding’ word. If you haven’t caught on I don’t feel that anyone who isn’t a sufferer can understand, partially as the women themselves are struggling to understand as well.  So what does this mean I think the partners roll is in the relationship if they can’t understand? It’s to show that you are trying to understand, as for me and my partner this trying to understand has made it so much easier when my partner has the evil gremlin come and visit.

Kyle"s partner, Anika is QENDO's University Coordinator and part of our Endo Sister Program. 

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