Endometriosis ruined my sex life for 10 years, here's how I kept my relationship alive

Joanne Kerr, 35, a nurse from Kent, lives with her husband Jack, who runs his own electrician business. They have two daughters, Penelope, seven, and Sienna, 19 months. Her endometriosis can make sex very painful at times, but their relationship is stronger than ever.

I remember when Jack and I first met, at a local nightclub in 2009. He had a cheeky smile and we bonded over the fact I was wearing the same band t-shirt (Sonic Youth) as Jack’s friend. I didn’t even know who the band was, I’d just seen the T-shirt in New Look and liked it.

I was 20 at the time and I was suffering with really heavy periods but I didn’t know then that I had endometriosis. My periods were so painful I sometimes had to take time off work but I thought that was just bad luck.

I’d been back and forth to the GP so many times since I was 14 to get some help with my periods and the debilitating pain that came with them but I was just given the pill and told it would probably get better with time. When I wasn’t bleeding, the pain was just about manageable.

Getting a diagnosis

I was 21 when I was finally diagnosed with endometriosis, which I call ‘endo’, where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes.

I’d been suffering with sickness, blood clots, fainting and a loss of feeling in my legs which could sometimes last for up to 48 hours. But Jack and I fancied each other so much, I didn’t think my endometriosis would have that much of an impact on our sex life. We would usually be able to have intercourse without any complications or pain.

Yet, not long after I was diagnosed, it started to become an issue when I began experiencing pain during sex. I thought maybe it was because I wasn’t relaxed enough or had too much on my mind. I actually never put two and two together and realised it was probably down to the endometriosis.

My GP had never mentioned that my condition could make sex painful and my consultant had never spoken to me about it either. It was only after a really bad patch where it had been uncomfortable for months and hurt afterwards that I brought it up with a different consultant at another hospital. He said that endo can cause painful sex. I think I was about 24 or 25 at the time and it was a lightbulb moment. So that’s what it is, I remember thinking.

Unfortunately, my consultant didn’t give me any advice or recommendations on how to make sex less painful. He just gave me a nod of recognition and sent me on my way.

Wedding night

Around the same time, in 2015, Jack and I got married. We had a big, traditional white wedding then went to Rome on our honeymoon. By then, we’d been together for about six years so I wasn’t too worried about how our wedding night would go or about putting expectations on ourselves to have a big night of passion.

Just as well really as Jack passed out and my maid of honour had to help me out of my dress and undo all the buttons at the back! We still laugh about it now.

On our honeymoon, we were too busy seeing the sights around Rome to worry about having lots of sex.

Sometimes, my body felt so sensitive and raw, it just didn’t feel natural. At worst, when the wall of my vagina and cervix is inflamed, it’s like having an open wound and having it poked and prodded.

Painful sex

Since Jack and I met, I’ve had five laparoscopic surgeries for endo and adenomyosis (a similar condition linked to endo where the lining of the womb starts growing into the muscle in the womb wall) which has been tough.

If I was going through a particularly bad patch, I would just have to tell Jack I couldn’t have sex for a few months especially if ovulation had been painful or I was taking a different medication. He has, luckily, always been very caring and understanding.

There is no doubt that having endo has impacted us to the extent that it doesn’t give us the sexual freedom that I’d have liked for a young couple but we have realised that there are a million other ways to be intimate and connect with each other. We love cuddling up on the sofa.

There have been times we’ve had to abstain from sex for a few months but we have learned that there are other ways we can feel intimate and connect. We try and take each day as it comes.

Sometimes it’s even been so painful, we’ve just had to stop halfway through. It’s really frustrating because even though I might be feeling turned on and I don’t want to let Jack down, at times it's beyond my control.

Jack knows there are still times when it’s just a definite no if I’m in lots of pain or suffering with fatigue. I might tell him I’ll see how I feel later. But, most importantly, he knows not to take it personally and understands that it’s the condition, not me.

Keeping the spark alive

As we’ve got older, we have to be a bit more prepared with the use of lubricant – mainly for the comfort factor but it can sometimes also be a bit fear-based too. I know I tense up, thinking it’s going to hurt so that doesn’t help. It’s like going for a smear test. If you relax it’s more comfortable but it’s 10 times harder if you are tense. It’s the same with sex for me.

I think, as a couple, we have managed to navigate things pretty well. I always tell Jack how I’m feeling and we try and joke and make light of it. We are very open and relaxed together. Our friendship and relationship is much more than just sex but I still find him really attractive. I know he feels the same way about me too.

Jack makes me feel good 24/7. We still feel like teenagers at times and I know the spark is very much alive. The other morning, I was getting dressed, putting on some leggings and a t-shirt for the school run, and he came in and said, "Phwooar, you look so sexy." It made me laugh but it’s also reassuring and makes me feel good.

HRT – a game changer

Since having my youngest daughter, I have been taking something called Zolodex to help with the pain but it’s also reduced the amount of oestrogen I’m producing so I started taking HRT and testosterone around three months ago too.

As a result, my libido is very much back on track again. If anything, it’s probably been on the higher side. Pain-wise, things have been a bit more settled. Early next year, I’ll be going to have a hysterectomy which should help me overcome my endo for good.

Jack and I sometimes have to joke about my early menopause. I didn’t expect to have to tell him about my hot flushes or that I’m going to bed with my hand fan and nightie at the age of 35.

As women, I think we put so much pressure on ourselves to be sexual goddesses, wear sexy lingerie, have sex several times a week and just set really unrealistic expectations for ourselves.

But sex is just a small part of our relationship and we don’t find it hard to keep the romance alive, even with two young kids. We’re still best friends and we try and organise regular date nights. We book sleepovers for the girls to stay with my mum, who lives just up the road.

We check in with each other throughout the day and try and sit down as a family and eat together every single night. We kiss and hold hands and cuddle or have a dance around the kitchen. Our bond is strong enough that sex isn't the be-all and end-all.

For information and support, visit Endometriosis-uk.org. You can follow Joanne on Instagram @me_mywomb_and_i.