Endometriosis can be a painful and often debilitating condition where tissues similar to the lining of the uterus (Endometrium) grow outside the womb yet still behave as if they were part of the menstrual cycle—thickening, breaking down and shedding once a month in a painful way—bleeding where there’s no escape through the cervix or vagina.
The symptoms associated with Endometriosis
Symptoms can include extremely painful periods, painful intercourse, excessive bleeding, infertility, pain with bowel movements or urination—especially during mensuration.
It has long been misunderstood and many sufferers complain about the medical profession not taking their symptoms or pain seriously. Indeed, it can take on average 7.5 years for a patient to be diagnosed. SEVEN AND A HALF YEARS! There’s been a lot of sadness and emotional distress caused by this, thoughts of time wasted and grieving the years lost to extreme pain. Much like our recent story on PCOS polycystic ovary syndrome, women and AFAB (assigned female at birth) people living with these conditions can find it isolating and crushing to their emotional wellbeing.
Why does it take so long to be diagnosed?
Often the diagnosis only comes when the desire to become pregnant appears and there’s problems conceiving, only then to doctors seem to take the condition seriously, but what about before then? What about those wanting to live fulfilling happy lives including full and satisfying sex lives. It all yet again comes back to education. Where sex and pleasure should be absolutely included in a rounded and thorough sex education class. Where we can be told that penetrative sex shouldn’t include pain and that this should be taken seriously and explored. And that there is so much more to sex and sexual pleasure than a penis being put into a vagina.
There is definitely better knowledge now with people educating themselves, demanding proper treatment and doctors are catching up. Read this wonderful article on Endometriosis by Livvy who is a doctor, acknowledging where there are discrepancies and fighting for a better understanding of women and AFAB people’s medical treatment.
So what’s it like to live with this progressive condition and how does it affect the sexual experience? A group of sex bloggers and writers recently raised over £3,000 for Endometriosis UK by holding an erotica writing marathon called Smutathon. Some of the writers have personal experience with Endometriosis and here’s what they had to say…
Jessica’s personal experience of living with Endometriosis
I remember the first time I started to become curious about sex says Jessica H. I was at my mum’s one weekend, I was about 8 and I found The Joy of Sex on her bookshelf. I sneaked it off under my nightie and took it to bed, fascinated by the drawings depicting pure erotic pleasure, which I felt, even at that young age.
As I got to my teens, I was aware of my sexuality. I was appealing to boys, never short of admirers and confident in my being. I was sexually aware from a young age, masturbating often, but didn’t actually have sex until I was seventeen. Once that happened, I had many one night stands never bothering to make anything long term. I felt free, able to do I wanted because I wouldn’t see the person again.
I was 17, when I encountered, possibly the biggest cock I have ever seen. Thick in girth, a real filler, if you will. I thought it touched my intestines, such was the pain, even though he had taken every measure foreplay wise to ensure I was ready and I was but the pain was unbearable. I couldn’t figure out if sex was meant to be like this. We didn’t last long. I had a few more sexual partners all pretty well endowed, some hurt, some didn’t. Sometimes it depended on where I was in my cycle and because I kept track of it, sex was more painful the closer I was to my period.
Once I had my appendix out at 18, I put sex on the back burner, worried that I was always going to feel the pain. I masturbated a lot, enjoying the gentleness of my own touch, but I knew nothing about toys so I would use vegetables of the phallic-shaped variety to masturbate with. Call it resourceful.
I moved to the UK when I was 19, still single. I met someone about six months after moving there and we moved in together six months later, even though I was in pain a lot of the time I was always up for sex and partner always found me sexy which further fuelled my erotic nature. I soon found that I liked dressing up and playing sexy roles. But I FELT desired…wanted, and I think that’s what made and makes the difference.
As I got older, with the advent of computers and phones, I started to become even more curious. I had partners who loved my adventurous nature and my curiosity for all things sexual. Pain in the back of my mind, I would never say no to sex. Throughout my sexual escapades, I was constantly having to put my hand on my partner’s stomach of the time or moment and ask him to slow it down, because I wanted “to feel him sliding in and out of me slowly” when in reality I wanted the hell party to stop near my cervix.
I was thirty-one when a smear test indicted grade three dyskaryosis (a change to the cells of the cervix), I have never been so scared in my life, thinking I was going to die. The nurse put me at ease, the consultant was an asshole and I found myself for the first time not wanting sex at all. Back and forth to doctors with constant nagging pain, the pain I had when I got my period, the dragging feeling I kept feeling in my womb. The list goes on.
When I was thirty-three I was in my last relationship that I would have for a while, we had been together for three years and he started to become violent, my partner (so-called) always just lazily fucking me, not bothered about my own pleasure and eventually the sex stopped, and I was glad. I masturbated more and more, searching websites for new sex toys. Soon, I had a whole top drawer.
As much as I loved sex I was more comfortable being on my own and giving myself pleasure. I bought more and more toys, constantly looking for new ways to feel good. I started talking to different men online about sex and things we both liked to do. Always saying I would love to meet up when in reality I just wanted to be by myself, giving myself the pleasure I knew felt good. The pain from my Endometriosis was getting worse as I got further into my thirties, my periods getting heavier, the dragging feeling getting stronger. Finally, when I was thirty-seven I was properly diagnosed as having Endometriosis and they also found a large fibroid at the back of my womb. I was due to have a hysterectomy but I wasn’t given enough information, didn’t feel ready and secretly I was really worried I was going to lose any sexual feelings I had and that would be it! My life would be over.
I started weight training, at the end of 2017 and lost over two stone in weight. I felt much better and noticed a huge improvement in my periods and the amount of pain I was feeling, this was the result I had, this is not necessarily the same for everyone. I had also met someone new after four years of being actively single. The first person I have ever felt complete sexual freedom with. I was in pain occasionally, however not as much as before and we just had wild sex. I could act any fantasy, we tried swinging, he would always indulge my love of anal sex play, watersports… anything went. I have never experienced such sexual chemistry and sometimes I feel I will never have that again.
I’m in a new relationship now, it’s more sedate. With the pandemic, my weight increased again and I just don’t feel sexy right now. I still masturbate a lot, my partner works away so it’s a pussy party for one. When he’s home, we might have sex once or twice but it’s not the earth-shattering sex I was having but I think it’s a lot of how I feel about my weight, and how my partner does. Neither of us are at a particularly good fitness level, preferring treats over sex. And my pain is back, more constantly. I still think about sex a lot, I look at a lot of erotic pictures, I read sex blogs, touch myself when no one’s looking.
I found masturbation during my period, a relief, for both pain and also stress, especially after I started using the menstrual cup. About two days into my period I would normally masturbate because it does relieve the pain and also helps me sleep properly. Days one to three are the worst.
I think if I was to give any advice, it would be to not give up and write off sex and masturbation completely. Talk to your partner, some can be understanding, others don’t even know what you’re talking about and don’t really care even if you explain it. But spend time by yourself, trying new things, touching gently, buy new toys to try, maybe ones that are more focused on the clit if penetration is too much, as sometimes it can be uncomfortable. But the most important thing is to continue looking for ways to make yourself feel good, it doesn’t have to stop!
I want my fire back. I have always loved sex and it’s an important part of connecting with yourself and your partner. So on the back of that, I have decided to start training again and see what happens. I’m not putting a time limit on it but I am going to journal, possibly to see if there is a pattern. I’m forty now and I know there’s still so much more for me to experience sexually.
It’s not over, just on hiatus.
Read Jess’s endo story, Supercalifragalisitc Endometriosis.
Isabelle’s experience of Endometriosis
I found penetration extremely painful when my Endometriosis was bad said Isabelle one of our erotic authors. To the point that at the thought of having penetrative sex, my vagina seemed to just clamp shut. Especially towards the end —the two years before I had a hysterectomy—my husband and I barely had sex at all. But it didn’t have to be that way. I wish I had been more enlightened when I was struggling with Endometriosis. I always thought that sex = penetration and if I couldn’t offer my husband that, then what was the point of having sex? And as a consequence of not having sex, I felt useless and not sexy at all, so I never really initiated sex. I also never found that orgasms eased my pain, but that was likely due to the fact that I also had Adenomyosis, which affects the uterus and makes contractions (even small ones you get when you orgasm) extremely painful.
My advice to my younger self would be to forget the idea that sex = penetration. To communicate with my husband more, because he would have gladly taken penetration off the table and still engaged in sexual activities. Masturbation is also very helpful to find out what hurts and what doesn’t (and when!). Sex is definitely still possible when you have Endometriosis, but it takes a lot of communication between you and your partner and you need to be gentle with yourself.
You can read Isabelle’s story about her journey with Endometriosis, My Uterus and Me—A Hate Story on the Smutathon website.
More experiences and stories of those with the condition
There are so many of these stories throughout the internet of women and AFAB people struggling to find the diagnosis and help they deserve, so by highlighting these and amplifying their voices hopefully we can begin to change this for so many people. There’s less shame and taboo about periods now and it’s encouraging and exciting to see people take control and shout out. Many people take to social media to share their experiences, for example, Lara Parker has just released a book called Vagina Problems she is hugely vocal about her Endometriosis and how she refuses to bow to medical opinions that don’t serve her. She is a voice for women and AFAB people who suffer, to embrace their sexuality and not forget about it as part of their whole human experience. Lara has even posed nude for Playboy and dedicated the photo to medical professionals who made her feel like she didn’t deserve sexual pleasure if it gave her pain.
“I deserved it then and I deserve it now and I no longer need your permission or blessing for any of it.”
With more voices talking loud about their Endometriosis, the more we can open dialogue and push for better education—especially surrounding sexuality and the sexual experience being part of our holistic journey. Pleasure can so easily slip from our grasp when we’re in pain or feeling physically or emotionally low, by discussing and highlighting these topics we can start to demand that it be taken seriously as part of our full human existence.