02 April 2023

Learning to live – and love – with endometriosis

WRITER: AS TOLD TO SIONAINN MENTOR-KING

PHOTOGRAPHERS: FRANCINE BOER & CHARLIE HIGGISON

Sophie Barnes, 31, lives in an isolated spot on the Whanganui River with her husband Dorrien – and a thousand ewes. Until she was in her late twenties, she was told the symptoms she had experienced since she was twelve were caused by irritable bowel syndrome. Despite an accurate diagnosis of endometriosis and surgery, the chronic illness is something she will likely have to live with for the rest of her life. She shares her journey and the insights she has gained with Shepherdess.

My first hospitalisation was when I was twelve, and I got diagnosed at twenty-eight. I’ve always had [health] issues – at twelve, I was hospitalised for stomach pain and vomiting. My periods were very heavy, but I didn’t have the relationship with my mum to be able to talk about that kind of thing. So I just powered on. I went to the school nurse a few times, but no one ever had any answers.

I left home at sixteen and started self-advocating, going to the doctors. They just told me it was IBS. I was on contraception at that point, so I didn’t have periods. The big symptom of endo is painful periods, but a lot of women don’t have that, so they think they don’t have endo. I was actually self-medicating for that [by taking contraception] without realising.

I had a lot of doctor’s appointments and ultrasounds, and no answers. I moved to New Zealand [from the UK], and my symptoms got worse and worse. I’d be walking up stairs and I’d just be so fatigued and drained. My legs would feel heavy, like they were full of sand. I couldn’t eat gluten, I couldn’t eat dairy. But I kept being told it was just IBS.

It got to the point where I started bleeding and didn’t stop. I went to a doctor and she asked me if I’d heard of endometriosis. I hadn’t, so she talked me through it and I burst into tears – it was the first time a doctor had ever listened to me and come up with a diagnosis that wasn’t IBS or mental health.

There’s not much research done on endo. It’s an inflammatory disease, but we don’t know what causes it and we don’t know a cure. I had it on my hip wall, my pouch of Douglas, my uterus and a few other spots.

Around the time I was twenty-seven, I just couldn’t function anymore. I couldn’t even walk to the toilet. I was having to crawl through the house. I’m nearly six foot, and I think I was down to about forty-five kilos. [That’s when] I spoke to the lovely Deborah Bush at Endo New Zealand.

Sophie+Barnes+living+with+endometriosis+shepherdess.co.nz

I’ve had two ectopic pregnancies because of endometriosis. They don’t know why and they can’t tell me how to fix it. If I choose not to be on birth control, my periods get very heavy and if there is any minuscule spot of endometriosis that the surgeon missed, that will continue to cause me problems as I release hormones. It’s a vicious cycle.

I lost part of my uterus during my second ectopic. Infertility is an issue with endometriosis, but for us that wasn’t the problem. We got pregnant very quick, but unfortunately it didn’t stick in the right spot both times. So there’s a few tests that I’ve got to go through over the next few years to see how well my uterus has healed. We’ve put a hold on it at the moment because I mentally can’t take the loss of another child.

I’ve always known I’m going to be a mother. The plan was to have seven kids; now, we’ll hopefully have one. We will adopt or foster as well. It means I get to help more kids, not just my own.

A015C505_23032965_CANON.00_29_08_20.Still004+(1)

I’ve also had a bowel adhesion – my colon was stuck to my hip. In 2021 I had surgery to remove that. Now my ovary’s stuck to my hip, so I’m dealing with that. They might just want to remove the ovary, and they’ll tell me to try and get pregnant first. But I’m not ready, because I might have another ectopic. That’s the mental burden of having endo.

I see a pelvic-floor physiotherapist; I have to do my stretches every day. I’m very much into yoga. I meditate. I keep my diet really clean and healthy. I don’t take painkillers because I don’t want to hide what I’m feeling. Acupuncture is phenomenal for endometriosis, so I do that as well, but it’s as and when I can afford it.

It’s a matter of just learning to live with it. Even a hysterectomy is not a cure. The uterus doesn’t cause endometriosis so getting rid of it does nothing. You’d have to get rid of both ovaries to not produce the hormones that inflame the endometriosis, but then you’d have to take oral hormones anyway.

Sophie+Barnes+and+her+partner+shepherdess.co.nz

The unpredictability is the most difficult thing. I don’t know when I’m going to bleed. I don’t have a regular cycle. Some days I can have pain and I’m not sure why. It’s stressful. I had to rush my dog to the vet the other day, and the next day I was in agony because my body went into fight or flight and released adrenaline and that flared up my inflammatory system. It’s little things that really affect your day-to-day life.

I spent ten years pretending the pain wasn’t there. That’s taught me I can push through really hard things. But endo has also taught me that I have to slow down. That’s the result of a few years of therapy. I’ve come to an acceptance of it.

And Dorrien is phenomenal. I know it’s really hard for him to see me in pain and not be able to do anything about it. I joke that we need a support group for the partners too, because they have a huge mental burden. Dorrien never gets frustrated with me being sick. He reminds me, “It’s not you. You didn’t cause this. You’re just trying to grow through it, that’s all you can do.” Whereas I’m like, “Fuck’s sake! I’m useless!”

The best thing partners and parents can do is make sure that a person with endo doesn’t feel like they’re causing issues. My house is a mess, but we’re okay with that because I’m not going to take the extra cup of energy I’ve got to clean the house. We have an agreement: if there’s an extra cup, we do something that we want to do.

It’s about learning to live with the condition and not resent it. I think that’s probably the cure – learning to live with it in a non-resentful manner and going, “Okay, these are the cards I’ve been dealt. Let’s make the most of them.”