Sex tips for people with endometriosis

Sex, for many of us with chronic pain conditions and disabilities, is not a straight-forward thing. Issues such as dyspareunia (the medical term for painful penetration), low libido, discomfort, irregular bleeding are all potential reasons for this, and all of which can be caused by the same culprit — endometriosis.

Endometriosis is a condition which causes cells similar to the ones in the lining of the uterus to grow elsewhere in the body and is estimated to impact one in ten people assigned female at birth(Opens in a new tab). These cells react in the same way as those within the uterus, building up throughout the month and eventually breaking down as blood. However, unlike the cells within the uterus that leave the body as a period, this bleeding has no way of escaping, therefore causing a variety of issues ranging from chronic pain, fatigue, and depression, to fertility issues, wider social complications (such as one’s ability to fulfil work, social commitments, and relationship needs) and, in some cases, organ damage. 

58 percent of people with endometriosis feel that it has impacted their sex drive, and 54 percent believed that this had damaged their relationships with sexual partners, according to LoveHoney data shared with Mashable. Of the 38 percent of people surveyed who had not not spoken to a doctor about this, 30 percent shared that they did not know who to speak to, or could not bring themselves to discuss it. A further 20 percent had given up any hope of finding a solution. It’s clear that people living with endo are feeling despondent and hopeless when it comes to their sex life.

As someone who was in a medically induced menopause at just 21 due to endometriosis, I know first hand the extent to which the condition can compromise all aspects of your life — but perhaps one of the hardest parts to discuss is the impact it can have on your sex life. 

I know first hand the extent to which the condition can compromise all aspects of your life.

Monthly prostap injections(Opens in a new tab) temporarily stop your ovaries from functioning — therefore stopping the production of oestrogen. I had began prostap while on the waiting list for surgery, in attempts to prevent my endometriosis from worsening during my waiting time.

Broaden your views of what ‘counts’ as sex

Sex can become an incredibly alienating topic when it comes to endometriosis, especially when general understandings of sex are confined to heteronormative views on what does or does not ‘count’. Standard penetrative sex can be an incredibly painful experience for women and non-binary people with the condition, which can lead to feelings of guilt and insecurity within an individual. We ask ourselves: “Is it supposed to feel like this?” “Am I doing something wrong?” “Why does it look so much easier for everyone else?” But what we should really be asking is, “if this doesn’t work for me, what does?”

On-screen portrayals often depict sex as the most intimate experience we can share with another person, making it seem like a key, non-negotiable and easily obtainable part of romantic relationships. However, this is not always the case. Mainstream pornography and heteronormative sex scenes in films and television shows have largely dictated that sex should look and be a certain way — usually involving penis-in-vagina (PIV) sex and favouring positions like missionary and doggy style. In reality, these positions are not accessible or enjoyable for many of us. 

Sex is much more than just penetration.

Reproductive health scientist and sex educator Zoya Ali shared some accurate and accessible advice for people with endometriosis when it comes to improving our sex lives. “The first thing I would like to address is that sex is much more than just penetration,” Ali told Mashable. “Pleasure should be the goal of sex. Working on figuring out what pleasure means for you could help add to intimacy in partnered sex.”

She also emphasised that pain with sex is a particularly common symptom of endometriosis. “This pain will vary for everyone. For some, it might not even happen. Some might only experience mild pain, while others have reported it to feel like a stabbing shooting pain.”

This pain can be impacted by the locations of the endometrial lesions, as penetration can cause irritation and inflammation.(Opens in a new tab) In short, there is no textbook way to experience endometriosis-related pain during sex, as it impacts individuals so uniquely. For some, orgasms can actually trigger their flare ups, so finding out what is comfortable for you needs to be a completely individualistic approach. 

When it comes to penetrative positions, I have always had a love-hate relationship with missionary and spooning. Before my first surgery, missionary was essentially impossible, with spooning being an easier alternative. Four years on, and two surgeries later, spooning causes me intense discomfort, and missionary, while still uncomfortable at times, can actually be enjoyable on a good pain day. If pain is inconsistent, then, how can we confidently approach sex?

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It would seem that sometimes, it really is more about the motion of the ocean. “Focusing on shallower. slower penetration or non-penetrative sex can help ease the pain,” Ali tells Mashable. “Usually, the depth, angle, and pace of penetration in a certain position would be what is causing you pain. Any position that shortens the vaginal canal or involves deep penetration, like doggy style, could become painful. Good old missionary can also be painful because of how the uterus gets positioned during intercourse.”

Clinical Sexologist and Therapist Ness Cooper(Opens in a new tab) echoed these views, adding that: “If other organs are affected by endo, it can be hard to recommend a specific position that would help without knowing the individual’s pain areas.” They recommend trying baths, heat pads, or even switching on a heated blanket before getting intimate. This may even make it easier to orgasm, as heat helps to promote a good blood flow throughout the body.

Focusing on shallower. slower penetration or non-penetrative sex can help ease the pain.

While not every penetrative position will work for everyone with endometriosis, here are some tips and tricks that Ali and Cooper suggest.

To penetrate, or not to penetrate… 

Missionary doesn’t have to be a lost cause — sometimes we just need to approach things from a different angle… literally. Adding pillows or blankets under your hips for additional support has been reported to reduce the pain(Opens in a new tab) associated with positions such as this, which is a win for those of us who miss the intimacy of this position. 

Ali added: “OhNut(Opens in a new tab) is a great product to consider for this. It is made of stackable silicone rings that can be worn on the penis and act as a physical barrier to control penetration depth.”

Cooper adds that cock rings may also be helpful for penis-in-vagina penetration in positions that affect the cervix and vaginal canal, as they act as buffers to reduce the penetrable length of the penis.

It is key to bear in mind, though, that penetration is not the be-all-or-end-all of sex. Oral sex, fingering, and mutual masturbation are just as important and enjoyable — and often much less painful.

Ali shares: “The entire body is capable of being stimulated and pleased. Research has shown that most people prefer some form of clitoral stimulation either alongside or instead of penetration to be able to orgasm.” 

Both Cooper and Ali suggested massages as a great way of improving intimacy while also soothing pain. “Mapping out and discovering erogenous zones in your body. We sometimes also forget how sexy kissing, touching, and cuddling can get, so don’t forget to spend generous amounts of time doing that.”

Cooper adds: “Seated sex toys such as the Ruby Glow(Opens in a new tab) may provide enjoyable external pleasure and orgasms, whilst the pressure of the sex toy also can feel comfortable even to those with pudendal nerves discomfort or pubis synthesis.”

Giving mutual masturbation a go can also be insightful — this way, you are completely in control of the experience, and can navigate your orgasm with full knowledge of what hurts you, and what does not. Masturbating together gives you the freedom to be in total control of your pleasure, so you can navigate your pain while still being intimate with your partner. In doing this, you can also show your partner how you want to be touched.

Finally, though most importantly, addressing your sexual boundaries with sexual partners —new and old — is essential. What’s off limits for now, or forever? What are you open to trying at some point? Talking about sex can be daunting at the greatest of times, and endometriosis related struggles can make this more of a challenge. It’s important that these conversations happen in a neutral space, outside of the bedroom, at a time when you’re not on the cusp of tumbling into bed together. 

“It can be a challenging conversation, especially with a new partner,” Ali shares, “but effective communication is very important when it comes to partnered sex. Opening up to your partner(s) about what you like and dislike can help make it a more supported, pleasurable and intimate experience for you all.”

By not opening up to your partner, you are putting yourself through unnecessary pain and dealing with it in silence, which, in the long run, could cause hesitation to have sex and ultimately impact your intimate relationship.

“We often overthink the number of times people are having sex during a week, month and even day. When in fact most individuals have sex less than 10 times a month, and some only once a week,” Cooper shared. It is normal to not want sex all of the time, and for couples to sometimes have mismatched sex drives, especially when endometriosis pain and flare-ups are in the mix.

Cooper emphasises that it is incredibly important that, “if a partner is making you feel guilty about setting boundaries and not wanting sex, it is key to explore the reasons behind why they feel it’s important and the emotions behind that.”

How can you come to terms with your own boundaries, then, and put them into action? 

Mix up your sex positions

As the saying goes, you don’t know until you try. It’s important to try new things at your own pace, as this will help you recognise which angles and positions are causing you discomfort.

Ali explains: “Spooning on your side allows you to control the depth of penetration. Since your partner will be penetrating you from behind, it allows for shallow penetration. It also allows your partner to give some loving to the clitoris either with their hands or using toys.”

Getting on top is also worth a try! Positions like the seated lotus or reverse cowgirl allow you to control the depth of penetration and set the pace of the thrusting movement, which is a great way to explore your limits and better understand what is causing your pain. Depending on where your endo and pain is, Doggystyle can also allow for shallow penetration, which is less likely to cause irritation.

Keep track of your pain and pick up on triggers

Keeping track of patterns and triggers you notice in the correlation between sex and pain is incredibly valuable. “Make a note of the times you experienced pain to understand potential triggers. Was it during, before or after penetration? Was it a certain specific position? Was it at a certain time in your cycle? Did something like lube help?”

You might notice specific points in your cycle when your symptoms flare up. Some people report feeling more pain around the middle and end of their cycle or while on their period. 

Make a note of the times you experienced pain to understand potential triggers.

Cooper told Mashable that “heated sex toys are probably one of my favourite and most successful recommendations, followed by seated sex toys, and sex position pillows and straps.”

They acknowledge that finding ways to work with chronic pain conditions in the bedroom can be an expensive and draining journey, so it is key to explore as many inexpensive options as you can at different stages of your cycle. What works when you are flaring? What feels good when your pain is a 6/10? What about when you’re having a good day?

Ali adds that: “Bloating can also be a cause of pain. If you find certain foods trigger your bloating, try avoiding them before you are looking to have sex.”

Ease into it

If you find that the idea of sex is making you anxious, it’s important to address these feelings — you can’t expect your body to relax if your mind is racing. “You don’t have to rush directly into penetration [particularly in penis-to-vagina sex]. Focus on getting yourself aroused and building up to it to give your body time to lubricate naturally, making penetration easier,” concludes Ali.

It’s important to give yourself time, as the anxiety you are feeling might actually be adding to your pain. Easing into it will help relax your nerves. Ali suggests: “Take a warm shower together, light up some candles, put on your favourite playlist, whatever gets you going!”

Use lots of lube

It’s important to be generous with lube, because a lack of lubrication can cause friction and pain. “Vaginal dryness can happen with age, hormonal imbalances, certain medications, such as hormonal contraception (which is often prescribed for endometriosis), not being aroused enough etc,” says Ali.

Seek support

Finding support, in whatever form that might take, is invaluable when you have a chronic illness. Online communities have been invaluable for me when it has come to navigating my endometriosis — whether it’s asking questions, needing advice, or just generally wanting to speak to someone who understands, I have always felt welcomed and heard.

Endometriosis UK has some great resources, including local support groups(Opens in a new tab) with regular meets (both online and in person), and a variety of blogs to read — including my own blog on sex and endometriosis(Opens in a new tab).  

Ali said: “If you find that your mental health is also effecting your sex life, you could consider attending counselling or sex therapy yourself or as a couple to navigate your feelings around it and improve communication.”

“You could also try and explore the option of pelvic floor physiotherapy to understand the cause of the pain and help navigate it.”

The beauty of sex is that it’s something we can make completely our own. No one outside of our individual bubbles will know of the intimacy we share with our partner(s), the ways we do it, or the ways we enjoy it. Endometriosis and other chronic pain conditions are not a death sentence for our sex lives — they are merely one of the many elements we must consider in order to understand ourselves and our partners. It is time that we stopped aimlessly following the ‘rules’ on how sex should be, and allow ourselves to explore, experience, and enjoy sex on our own terms.