Health & Wellness

Living With Stage Four Endometriosis

Ami shares with KK her experiences of stage 4 endometriosis
by KK
22 Mar 2019

UPDATED: 2 Nov 2022


We are joined by Ami. She’s a 25-year-old teacher, lover of all things Disney and Harry Potter, who suffers from stage four endometriosis. We’re grateful to have her at KK to share her experience.

Ami’s a newly-qualified English teacher for GCSE English Language and Literature. 

She has what she describes as “a wonderful, long-term partner who really does everything he can to understand.”  

What were the first symptoms that made you realise there was something wrong?

I mean – since my first period, really. I just thought that something wasn’t right. But to be honest, I just put it down to heavy periods. Until you get your period, you have no idea what it’ll be like. The girls at school even romanticised their period. It was always a competition to see who would get it next. We were all desperate to finally get our period because it meant we were growing up. But the second it came, we were all super miserable.

My periods used to be so heavy that they would stain my clothes within an hour and because of that, I didn’t want to go to school. Sometimes my teachers got suspicious of the number of times I asked to go to the toilet. And it wasn’t just the heavy flow, either. The fact that I was doubled over in pain when I was on my periods made it worse, but at 14 or 15, you just assume that perhaps it’s inexperience and all people feel the same way. In fact, only recently did I discover that 1 in 10 people with uteruses have endometriosis and it was a statistic that really shocked me.

What are your main endometriosis symptoms?

The main one for me is the pain. I can’t explain how badly it hurts. When you’re on your period with stage four endo, you just want to die. 

I was pretty ‘textbook’, as in I got all the symptoms. The heavy flow, pain during sex, pain when you go to the toilet, feeling and being sick, constipation and difficulty getting pregnant.

How do you live with endometriosis?

I’m quite a happy, upbeat person and I try to smile my way through everything.

But it becomes difficult to remain so upbeat when you’re in absolute agony all the time. Some people who have endometriosis suffer terribly during their period, but they are okay for most of the rest of the month. Unfortunately, for me it’s sporadic, and the pain can come whenever it fancies.

Because of the nature of my job, there’s a lot of talking, being on my feet and being consistently reliable, so when the pain strikes, it’s really difficult to continue hitting those standards and being there for the kids in my class. 

Does having endometriosis put a strain on your relationship? 

Yes. Don’t get me wrong, my partner is absolutely fantastic with it. He knows how to make me feel a bit better, and he knows how upset I can get because of it. I’m incredibly lucky to be supported the way he supports me, but I’m also aware that it can be draining for him. If we go out for dinner and the pain strikes, we have to leave immediately. If we go on holiday, we have to check where the nearest hospital is before we can book anything. 

I’m on very strong painkillers most of the time, which makes me very woozy, so he has to help me with – well – pretty much everything. And then there’s sex.

Does having stage four endometriosis mean you can’t have sex?

No, certainly not! We have a very healthy sex life, actually. It just means that there are certain positions that we can’t do with endometriosis because if he hits a certain spot, I’ll be bed bound for (sometimes) days. 

We’re still experimenting with positions that feel good for both of us and don’t cause pain, but I’ve found that on the side is the best position for us as it’s not ultra deep and it doesn’t seem to hit anything sensitive. Being on top is also great because I’m in charge and can decide the pace and can adjust the angle. 

Endometriosis also can dent your sex drive – being in pain all the time will do that to you. My partner has been really understanding of that, though, and since sorting out my pain management with painkillers and exercise, it’s improved dramatically.

What sex positions would you avoid with endometriosis? 

Just like every person’s sexual preferences are different, each case of endometriosis manifests itself in different areas and in various ways. 

For me, I’d probably say that doggie is the position that can cause the most pain. Because it’s deep, the chances of hitting a sensitive area are higher. It could be a perfect position if the person with endometriosis takes control for the very same reason as being on top. That way, if your partner’s favourite position is doggy, you don’t need to rule it out. It’s just that you’re doing the movement. 

What would you say to people who have just been diagnosed with endometriosis?

Firstly, I’d say that you have no idea how strong you are. It takes an average of anywhere from 6 to 10 years to even get diagnosed. So, you’ve likely been through the whole ‘the pain is in your head’ conversation with your doctor more times than you can count. The fact that you stuck with it and told your Doctor that there was something wrong means you’re already more than capable of handling your diagnosis. I’d tell you, too, that there are so many ways around endometriosis to make life normal. 

Exercise daily, even when the pain hits. I know it’s the last thing you want to be doing, but it will help.

Sex, as well, is a method of pain relief which can make you feel better! Just make sure you take control until you find a position that is comfortable and pleasurable for you.  

Thank you so much, Ami, for coming and talking to KK about your experience with Endometriosis.