Getting Real About Endometriosis and Painful Sex

When we shared this brilliant tote bag on Instagram, the response was immediate. Endometriosis is personal, painful and deeply misunderstood, and our community didn't hold back in sharing their stories. Despite being as common as asthma, it takes on average 7-9 years to get an endo diagnosis, which leaves many left in excruciating limbo without any real answers or tangible treatments.


What is Endometriosis?

So, if it’s so common, why does it take so long for endometriosis to be diagnosed? Biologically speaking, endo is a condition where tissue similar to the lining of the womb grows in other places internally, such as the ovaries and fallopian tubes. Often miscategorised as purely causing heavy or painful periods, endo symptoms can vary massively from person to person and can include:

• Lower back pain
• Fatigue
• Diarrhea
• Nausea before or during your period
• Chronic pain
• Difficulty getting pregnant
• Fatigue
  

Endometriosis’ impact can be significant, and have a negative impact on work, social life and romantic relationships, too.

Endometriosis and Painful Sex

We’ve heard from our community in our DMs and emails about the difficulties of pursuing pleasure when navigating endo - and their stories aren’t unusual. In fact, studies show that up to 70% of people with endometriosis experience some type of ‘sexual dysfunction’. Essentially, this means having problems related to sex, from reduced desire to have sex to feeling less sexually aroused, having a harder time reaching orgasm, or feeling physically tense or anxious before sex. Endometriosis can also cause dyspareunia, or pain during penetrative sex, due to pushing and pulling of tissue growth behind the vagina and lower uterus. One symptom of endo is bleeding after sex, due to a penis, toy or fingers irritating the tender uterine tissue. Note: if you do notice that you’re bleeding vaginally post-sex, it’s always best to have a chat with your GP or healthcare provider, as whilst it is a common endometriosis symptom, it’s always good to rule out anything else problematic. Whilst some people might find pain occurs only in the duration of sex, others have reported pain that lasts for hours, or even days afterwards.

How to pursue pleasure when you have endometriosis

So, does this mean sex is completely off the table? Firstly, it can feel incredibly isolating when getting it on becomes unbearable due to endometriosis pain, especially when we’re all bombarded with depictions and expectations of hot, kinky, acrobatic sex sessions. Our Co-Founder and gynaecology expert Dr Sarah Welsh shared her advice for keeping your sex life going strong when you have endo:

• “Communication is key. Often, partners find it hard to understand the level of pain endometriosis is causing, or feel too worried about hurting you during sex. Try phrasing feedback or explanations through the frame of “I” statements, rather than “you”. E.g. “I love it when you touch me there. I find deep penetration painful, but I love it when you (insert filth here).”
• “Don’t lie back and think of England. Pushing through pain is never a good idea and having penetrative sex whilst you’re uncomfortable or hurting can actually exacerbate soreness. Aim to stay connected to your body and what its feeling, and pause play when you need to.”
• “Take note of when you experience pain flare ups. Some people find that they’re less bad at certain stages of their menstrual cycle and schedule sex for around that time. In her book, The Science of Sex, psycho-sexologist and relationship therapist Kate Moyle makes the case for getting down and dirty with your diary and its benefits on your sex life.”
• “If you’re trying hormone therapy, or have had a hysterectomy to manage endometriosis, you might find that you’re experiencing vaginal dryness. This can cause irritation of the tender vaginal tissue and put you more at risk of tears and soreness. A gentle, water-based lubricant (such as HANX lube) can help remove friction - check the ingredients list to ensure your chosen lube is free from harsh spermicides or glycerine as these can cause more harm than good.”
• “Try different positions. Depending on where your endometriosis is, certain sex positions may be more comfortable than others. Our community rate face-to-face, side-by-side and reverse cowgirl particularly comfortable.”

• “There are some really brilliant toys/tools out there that can help manage painful penetration. Ohnut's wearable buffer rings are a go-to for many - they're a stack of soft polymer rings that can be worn on penises or toys to control the depth of penetration to a level you’re comfortable with. If penetration really isn't comfortable for you, there are plenty of clitoris-focused toys that ramp up the vibe. Our clit sucker Cindy is designed for deeper orgasms without any vaginal penetration at all.”

• “Self care extends to giving yourself a hand! Masturbation releases endorphins which can help with menstrual pain, aches and cramps, as these hormones ease soreness, promote relaxation, and reduce stress. Pleasure doesn’t always have to be partnered (but mutual masturbation can also be fun!). Take it slowly, focus on the enjoyment of sensations without the pressure of achieving orgasm as an endpoint.”
• “Whilst endometriosis doesn’t necessarily correspond with infertility, there is a noted association with fertility difficulties. This can really impact your physical and emotional intimacy with a partner, so consider sex therapy, through a service such as Relate. It can offer a real lifeline not just to speak openly about a very emotive experience, but help tackle some of the physiological and physical issues that are impacting your journey to starting a family.”
• “Remember you’re not in this alone. There are lots of charities and organisations offering peer-to-peer support and information to help you navigate the condition, including The Endometriosis Foundation and Endometriosis UK. If you’re fired up by the future of fighting endometriosis, This Independent Life hosts an annual conference which brings together voices across the endometriosis and women’s health space to share the latest advancements in research, treatment options and support, with leading experts including patient advocates, healthcare professionals, academic researchers, startup founders, and more. 
• “You deserve a fulfilling (and even filthy!) sex life. If endometriosis pain is impacting your pleasure, or you suspect that you may have endo, speak to your GP or health practitioner as soon as you can.”

Want more?

• Let's open up. Read more on how to talk to your partner about vaginismus.
• Try our top-rated clitoral suction toy, Cindy, with our natural, gynae-designed Lubricant.