Endo can be a lonely disease. There are times, particularly during my period, where I feel as if I’m the only one struggling with the urge to throw up, intense pain, fatigue and extreme blood loss. While I’m lying on the bathroom floor or curled up in bed, I count down the minutes until I can take more pain meds. These minutes can feel like hours. In these moments it’s difficult not to feel alone.
But I’m not alone. There are over 200 million people worldwide, and 830,000 in Australia who have endo. Alongside this large and diverse community, there are a host of others – their partners, family, friends and loved ones. A village of people who provide support.
Having survived yet another brutal period, I thought I would ask my partner of over six years, to discuss what endo is like from his perspective. My partner has watched me navigate my diagnosis, surgeries, recovery and daily life with endo. He is also often the person closest to me when I’m in pain and struggling with feeling alone.
Here is what he had to say:
R: When did you first hear about endometriosis?
I first heard about endometriosis when you got your diagnosis. I’d never heard about the disease before.
R: How did you feel about my diagnosis- when you learned what it was?
Initially, I was a bit fearful that it was some kind of cancer, which obviously concerned me. Hearing that you had cells growing where there shouldn’t be and seeing you so sick was terrifying.
When I found out there is no cure for endo, and no one knows what causes it, it was hard.
I was also fearful because it’s such a debilitating disease. I was shocked that there wasn’t more awareness about something that affects so many people so incredibly completely.
R: What, if anything, do you wish you had known before I was diagnosed?
I wish I had known initially more about what the treatment options would involve, and more about what the disease can do in the long term – that while it isn’t terminal, it is chronic.
R: What was it like for you while I was in surgery?
It was terrifying. You kind of downplayed it, especially for the first surgery. But it was such an invasive procedure and the six or so hours where I lost contact with you while you were in the hospital, I found that really scary.
That being said, I was comforted by the fact that your surgeon is very talented in this field, so that helped a bit. But the wait, while you were in surgery not getting any updates, plus the fact that the surgery took much longer than had been expected, was awful. It was also pretty shocking seeing you afterwards- you had a catheter and tubes everywhere. It was major.
R: What has it been like since my surgeries/ during my recovery?
The surgeries are a rollercoaster. For you, it’s been such a downhill spiral leading up to each one as you’ve been in so much pain, and things have gotten so bad. Then after each surgery, you have been fairly incapacitated while you are recovering. As a positive, it is so nice to see the recovery process and see you come back to the person that you were before you were in so much pain.
But there is still a fear in the back of my mind, that the result of the surgery or treatment won’t last forever, and we will have to go through it all again. It makes me sad to think that the results may only be temporary.
Pictured above: Rachel Burke in a hospital bed
R: How do you think endo has affected me?
I think in some ways it’s made you a lot more cautious about the timing of things that we do. For example, you have to be selective about your social life and career – finding a job that allows you to work from home, and choosing what social activities to attend, because you never know when you might flare.
On the flip side, it has also made you more appreciative of the time that you have when you are well. When you are well, you try to take advantage of that time as much as possible.
R: How has my endo affected your life?
It’s made me a lot more considerate about timing in general and what we do. I’ve had to become better at forward planning. I know that when your endo is in full effect, I will have to figure out if something we have planned can go ahead, or if there can be workarounds. If we can’t find a workaround I’ll often avoid suggesting things in case that amplifies the fact that you won’t be able to participate or attend.
In the back of my mind, there is also a constant worry that you might get worse again and that is something that I think about often.
R: What does support look like for you?
At the core, I think it is being present and offering as much support as I can give. I think it also involves lots of communication – talking and listening.
Talking about periods is really important – it shouldn’t be a taboo subject in a relationship. And particularly with endo, or at least your endo, being aware of when you have your or will be having your period helps me plan for support.
Knowing what endometriosis is, what are the signs of a flare and what the treatment options are, that knowledge helps me support you better.
Also, there are the little things, bringing you your heat pack, cooking and cleaning. I try to lift as much day-to-day responsibility as I can when you are sick, so at least that is one worry that can be put to bed.
Paradoxically, support also means allowing you to do things for yourself when you feel up to it. I think that’s important in helping you to maintain your sense of self, especially when you are sick. So it can be a bit of a balancing act.
R: What has been the hardest part for you in providing support?
You’re pretty stubborn and often don’t tell me when you are in pain. When things were really bad I would get frustrated that I couldn’t do more for you. I just had to watch you suffer and try to give you as much support as I possibly could.
R: What has been the hardest part for you generally?
The hardest part was the 12 months when you were pretty much couch-bound due to recovery and one of your treatments. That meant we couldn’t really live life together. You were housebound and that was something that I don’t think many people realise – that this disease can be so debilitating.
R: Have there been any positives?
I think over time, we have come to understand more about what endometriosis is, how it works and found some tools to help you manage your pain and symptoms. Over time your quality of life has greatly increased and mine as well through proxy.
I’m not constantly worried about you, and I think we both understand your limits, I also think we have been better at recognising when we might need to put plans in place or change things to accommodate your pain. I think now the pain is not every day, it’s helped because we can plan around when you might be in a lot of pain, and work to ensure you can rest and I can help you during those times.
R: If you could offer any advice for someone starting to support a friend, partner or family member with a new or suspected diagnosis of endo, what would you say?
Number one is to listen. You will need to listen to the person, hear and validate how they are feeling and what they are going through. Then educate yourself on what the condition involves. Be open to talking about it all, especially periods and other symptoms you might be uncomfortable with because you can’t support without communication. Sometimes that communication may be uncomfortable, but it will be worth it.
Also, be gentle. The condition can be excruciating, and the person you are supporting may be feeling confused and alone. You will need to be considerate and patient, try to help where you can and figure things out together.
As always, sending love to all those with endo, with a particular shout out this time, to the host of people who provide us with support – you are a village of legends.
Thank you, Cole, for sharing your thoughts with Endometriosis Australia.
Rachel Burke and Cole Bennetts