The Mighty Logo

How Endometriosis Has Affected My Sexuality

The most helpful emails in health
Browse our free newsletters

This is going to be a bit graphic and focus on sexual relationships when you struggle with endometriosis (although some of the issues aren’t exclusive to that). Not everyone will feel comfortable reading it. It was important to me that I wrote this because it’s one aspect that is rarely spoken about and it’s about time women felt able to share their experiences without shame.

I’m gonna start this with a quote from one of my favorite humans, Brene Brown, “If you put shame in a petri dish, it needs three things to grow exponentially: secrecy, silence and judgment.”

When I first watched her talk about shame and discovered this quote I felt a huge sense of relief. I realized I could finally pick apart my feelings around sex and intimacy now that I knew they mainly came down to feeling a sense of shame, as I was struggling to make connections with people and with myself. I’ll start with the awkward feelings when meeting someone new.

So, I’ll set the scene. (This is mainly pre-diagnosis.)

I’m meeting up with someone I’m interested in and health aside – I’m always extremely anxious. I feel so anxious and awkward that I honestly can’t even sit opposite of people (it makes me feel like I’m on “The Apprentice”) and often make them sit next to me.

I’ll make sure I’ve maxed out on painkillers but leave some time before I drink, in a vain attempt to protect my liver. But I usually feel too nervous to eat, which isn’t good considering I generally get there early and down some sort of alcohol before they arrive.

In the back of my mind I’ll be worrying about pain: when and if it’ll start, how bad it will be, whether I can hide it from them or it’ll come across weird that I keep taking painkillers whilst drinking – or constantly going to the toilet. But maybe it will all go well. They might expect to come back to my place, which is a normal expectation, but not when sex can be so painful that you feel it for days afterwards. So I weigh up the pros and cons in my head, all whilst trying to remain attractive, attentive and relaxed and go with whatever I feel at the time.

If I feel comfortable to say anything about how I can sometimes struggle with sex, it’s a big weight off my mind, but a lot of people don’t want to hear about your strange illnesses when trying to get with you in a casual context. And if I do choose to have sex, I’ll be so scared of it hurting that I’ll barely be in my body and will be distracted, anxiously going through the motions.


This isn’t supposed to sound really tragic; I’m just recounting what happens when you attempt to have enjoyable sex with a condition that particularly affects your sex life.

When you have endometriosis the following things can happen after (penetrative) sex:

1. Feeling like you’re going to pass out.

2. Passing out.

3. Throwing up.

4. Bleeding, a shocking amount.

5. Bleeding and cramps, for three days to a week afterwards.

6. A super sharp pain for no apparent reason during actual intercourse, which makes you need to stop immediately.

7. Suddenly feeling really upset and crying.

8. Excessive shaking and lack of energy afterwards – and not in a nice chilled out way.

These issues, along with the cocktail of hormones in your body, mean that enjoying sex can be a huge problem. The fact is, a lot of people without endometriosis can have similar issues to those that I’ve listed, or even just feelings of shame. It’s so isolating having these experiences, even with understanding partners. Not having an understanding partner can make it significantly more upsetting and make you afraid of intimacy whilst wanting it badly because you feel so out of touch with your body.

I don’t go in for dating much these days and when I do, I’ll try my best to explain the situation and make sure that the person involved has understood. It’s important that you feel safe, cared for and respected. If you don’t, then it might be best to wait until it feels right with someone. I definitely had a lot of experiences I regret with a lot of people who didn’t respect what was happening to me, and it really wasn’t worth it.

You can’t protect yourself from all negative experiences and you have to be willing to vulnerable with people, but it’s so much more important to think about what you really want from an experience first. For me, I know that a lot of the time I just wanted validation, and I’m not saying that that is a positive or negative thing, it’s just something that all people want. This disease can make you feel so devoid of sexuality, so out of touch with your ability to love anyone and can lead to you looking to other people to feel better. I’m not saying this will never work – the positive experiences I had with people gave me a huge boost and reminded me that in general, people are kind and genuine. But check in with yourself before you get into situations like these; ask what you want out of it and what they might want from you. It could ultimately save you a lot of heartache and endless lying in bed with hot water bottles.

A photo of the writers stomach, showing the physical signs (redness) of her conditions.

I spent a lot of my time in relationships sitting in sexual health clinics trying to find out what was physically “wrong” with me that made sex painful. A lot of that only made the situation worse. Many were unsympathetic and quick to dismiss me when nothing was obviously wrong. If you’ve ever had speculum examinations before, you know they are usually pretty horrific, and when repeated all the time they make you want to forget you even have a vagina, leaving you wanting to give up on the whole thing. The final straw was when I tried to speak to someone about the painful periods I was having, along with incredibly heavy bleeding, dizziness, sickness, etc. I also briefly stated that I suffer from anxiety, but that seemed to be the only problem the doctor picked up on.

She referred me to a sexual dysfunction clinic, which further told me that the problem was “all in my head” and made me not want to talk about it. I didn’t go to the appointment, and instead felt ashamed about the fact that I couldn’t enjoy any kind of intimacy with my partner. I felt as though it was all my fault. And because of how shame works, I stayed silent about it and so it grew and took over the way I viewed myself and my relationship. It got to the point where I needed to be alone, be honest with myself and figure it all out. Which was hard, but necessary.

I still haven’t figured out this side of things completely, but I know that taking time out to understand my body and sexuality helped a huge amount.

It might feel like you’re broken beyond repair and will forget how to connect to people in a sexual or romantic way, but that’s not true at all. Try as much as you can to be patient with your body and wait until you’re in the right situation, with the right person, before you allow yourself to be vulnerable. I needed to be alone, but not everyone will. Just be patient, don’t be ashamed and try and be as honest as possible and hopefully, things will get better.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: Eyecandy Images

Originally published: July 7, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home