So I managed to rope my partner Chris into writing a little about his experience of living with someone who has endo. He has been such a solid and stable figure of strength throughout the past few years as my symptoms have worsened, he makes my life so much easier and doesn't complain or express any difficulties for the changes he's made to his life to accommodate my needs. I am eternally grateful to him for the love and kindness he has shown me, so wanted to shed a little light on his own feelings, what helps him and what he feels makes a difference to me, so that other couples can draw on our experiences and maybe use them to help with their own.
Endometriosis can have a big impact on our day to day lives – the fairly strict diet that Jess follows to keep the pain manageable limits where we can eat, and puts a cap on how much coffee we can drink, which is one of our favourite things to do together - although that’s perhaps not a bad thing! When the pain or mental health related symptoms are bad we may have to cancel plans and stay in and watch movies or something, which again, may not be a bad thing but is definitely an impact that endo has.
On a more personal level, it can affect our relationship with each other. I have a very playful side and when Jess is feeling unwell or in pain, she is often not in the mood to be silly with me and I can take this personally and sulk about it! Another way endo affects our relationship is in the bedroom. As many endo sufferers know, sex can be painful and this puts a strain on our sexual relationship. It’s hard to know what is going to hurt, and impossible to know when it’s going to be worse – so you have to be prepared to have a very stop/start sexual relationship and like most things regarding endo, be thankful when it’s good and be patient when it’s not.
Longer term, endometriosis may still have a big impact on our lives. We don't think we want children, but we understand if we ever did decide to go down that route, that we might have problems with infertility or just have a tougher time getting pregnant. It's a big issue for many couples and in some cases, the biggest, we're lucky that having children isn't a priority to us so it's one less thing to worry about. These thoughts lead me to further thoughts about our future… will we go to the hospital one day for a routine scan and find something more serious, like major organ adhesions or ovarian cancer? I know that the chances of these are very very slim, her adhesions have always been minimal and the overall risk between cancer and endometriosis is low, but sometimes it's hard not to think about these things. Occasionally I'll worry about endo developing on her lungs or her brain, but I know this is extremely rare and I'm just being paranoid, but of course, these thoughts naturally cross your mind. A genuine worry I have is whether she'll develop heart problems just from the stress of the condition. I don’t want anyone reading to be scared by this, these are extreme thoughts with a very small likelihood, but they are real thoughts and are good to discuss and have out in the open.
The challenges for Jess are obvious to anyone who knows about endometriosis (and for anyone that doesn’t, I can recommend a great site – www.thisendolife.com). They include things like fatigue, challenges with mental health and positivity, pain and being limited in what she can do. But there is a secondary, albeit less severe, set of challenges that affect the people around the sufferer. For me the main one is probably patience. As endometriosis isn’t visible from the outside, it’s difficult to remember in the moment. I can mistake Jess’ fatigue and bad mood for apathy and take it personally; having to remind myself that it isn’t something she has complete control over. Also, being around someone who is down a lot takes its toll on your mood too. It can be exhausting trying to be happy for two people, and when that person reacts to your moods, it puts pressure on you to be happy and not have any complaints, just in case you make them feel worse.
There are lots of things you can do to support an endo sufferer and make their lives that bit easier. When Jess is badly fatigued I will get up and make breakfast, make tea, turn on the shower, open the curtains and try and make that first part of the morning as easy as possible. Due to the nature of my work, I’m often home first, so I will cook dinner, go to the shop, or clean the bathroom/kitchen/floor/whatever so that she can rest when she gets in and prepare things she needs to for the following day. Associated with this fatigue is bed time – I now go to bed a lot earlier than I did before, and although we have met in the middle regarding bed time, I do feel I notice those few hours missing from the day. I also see my friends less than before so that Jess can keep a good routine of going to bed early and being well rested. Most important is just being around to cuddle, make tea, and answer the door, things like that. Some tasks she will never let me do, so you can help someone with endo by just taking away some of the stress and pressure of life by doing as many of the mundane tasks as possible.
I appreciate Jess’ honesty about her situation so I have a clear idea of what’s going on and know that we are both talking sense to each other. Something invisible like endo and other conditions need to be verbalized because that’s the only way that people on the outside can see it and understand – it definitely makes living with an endo sufferer easier.
Having a partner with endometriosis will obviously differ greatly from person to person – a defining part of the condition is its seemingly random and endless list of related symptoms and malaise – so I can only relate it to my experience. There are challenges that come with living with someone in constant pain, and in maintaining a relationship with someone who’s mental health and libido are in constant flux - but really Jess and I are BFFs, and what we lose through endo, we make up for in our strong and unique relationship. We are on a journey together and learning how to overcome this condition, and all the time growing our relationship and gaining new strength and resilience. I’m also learning more about women’s reproductive health than I ever thought I’d need to know and I can talk about periods to anyone. We have it really easy in so many other aspects of our relationship - some people fight or have power battles, but we've been good friends for years and have never had that problem So although we may have the difficulty of endo, it's all relative and everyone has their share of challenges in life. Endo doesn't change how happy we are as a couple.