“Part of me feels guilty towards my partner – they shouldn’t have to worry about causing me pain in such a normal part of a relationship,” says Charlie. Endometriosis has always affected her experiences of intimacy in some way, whether it’s dealing with past partners who weren’t understanding or carrying feelings of shame. Thankfully, she now has a partner who makes her feel safe and cared for, but navigating intimacy with endometriosis is still complicated.

Charlie has had two surgeries and is awaiting a third. It took eight years of referrals and investigations to undergo her first one, and three years of fighting to undergo the second. Though her symptoms have come back, even short-term relief from surgery feels worth it. “My second surgery helped a lot with painful sex,” she adds. “I think it was my fused organs that were causing that deep, tugging pain.” 

Mr Hemant Vakharia, consultant gynaecologist and advanced laparoscopic surgeon at London Gynaecology, tells Strong Women that adhesions caused by endometriosis are a common cause of discomfort during sex. Intimate pain can also be caused by inflammation and the distortion of normal pelvic anatomy. So, what’s the solution? “Like most medical conditions, there isn’t a one-size-fits-all solution and it often requires trialling a few things,” he says. “The aim of surgery is to excise endometriotic deposits and release structures that may have become stuck together.”

Surgery can accompany other treatments, including pelvic floor physiotherapy, counselling, pain management medication and hormonal contraceptives to hopefully have a cumulative effect. “Hormonal contraceptives, such as birth control pills, patches or hormonal intrauterine devices (IUDs) can help reduce pain associated with endometriosis by suppressing menstruation and reducing the activity of endometrial tissue. They can also reduce inflammation, which may alleviate some pain, including during intercourse,” he states. “These methods can be effective for some, but they may not eliminate pain entirely.” 

For endo sufferers who hope to have children, their experiences of sex can seem even more complex. “Nothing quite prepared me for the effect endo has on your intimacy when you start trying for a baby,” says Charlie. “Those feelings of shame – like I’m not functioning as I should be – are only heightened since trying to conceive.”

Lavinia also found her desire to become a parent made this part of her life challenging. She had her first laparoscopy in her 20s (she’s now 36), but was advised not to have further surgery if she wanted to have children in the future.

“Fertility was a big worry for me as I always knew I wanted to be a mother. I had a few tests in my mid-to-late 20s, and they discovered my egg count was meagre,” she says. At this point, thanks to some financial support from her parents, Lavinia froze her eggs. “I’m so grateful that I managed to conceive my daughter naturally during lockdown, which was quite a miracle, but we still have our embryos in case we need them for a second child one day.

“It was a tough period – a lot of hormones, hospital visits, scans, and then after the procedure not knowing how successful it would be and waiting for that call was an emotional ride.” 

Though Charlie is still in the throes of figuring out her fertility journey, she notes that the process is helping her to understand her body and cycle, and “allowed communication in relation to intimacy to improve.”

Endometriosis can affect fertility in several ways, Vakharia explains. It can be due to anatomical distortion or due to “a chronic inflammatory environment in the pelvis that impacts egg and sperm function, and egg quality – especially in cases where endometriotic cysts [endometriomas] are present.”

“For women with mild to moderate endometriosis, laparoscopic surgery can be beneficial for improving natural conception rates. For severe cases, the evidence is less clear and the impact of surgery on fertility must be considered carefully, balancing surgical intervention with the use of assisted reproductive technologies such as IVF,” he tells us. “The advice will vary depending on individual circumstances, symptoms, the structures involved and – most crucially – the patient’s wishes.”  

Of course, not all types of endometriosis are linked to painful sex. As Vakharia explains: “Painful intercourse depends on the location and extent of the endometriosis, and some patients may not find [it] painful at all.”

But for those whose sex lives are impacted, endometriosis can have a devasting effect on mental health. Steph has found journaling, having a partner who is “mindful and patient” and actively practising self-compassion is the key to a clearer head.  

What else can be done at home while on the waitlist? How can we tackle discomfort or challenge those mental pangs of shame? Caitlin Perrett, a women’s health physiotherapist at London-based clinic Mummy’s Physio (part of Excellence Physiotherapy), shares her top tips.

Perrett explains that when we experience pain, particularly if it occurs over a long period of time or within the same environment, our brain goes into a protective state, which causes our muscles to tense. Thankfully, there are methods we can use to help our bodies relax. 

Combine breathwork with sex

“I tend to suggest trying calming breath patterns,” says Perrett. “Extending the length of the exhale causes the breathing rate to drop, which then helps to calm the nervous system.” Once you’ve begun doing that, she suggests imagining something like a flower blooming out of the opening of the vagina. “As you take a breath in, imagine it’s blooming out, and as you breathe out it’s staying open. Over time, the brain starts to learn that not everything to do with that area is negative, and that threshold for sensitivity starts to drop back down.”

Working with your pelvic floor

“If you’ve experienced pain with sex, the body will respond by contracting, so you’re going to get this physical response of the pelvic floor,” she says. We can ease discomfort by applying heat to the pelvis or having a warm bath. Movement is also a great way to work these muscles, and Perrett suggests yoga, dance or simple hip stretches. Simply lie on your back and move the hips from one side to the other.

Anything that gets the body moving and gets everything calmed down is a winner for better sex in the long run. “It’s key to build awareness of what your pelvic floor is doing,” she adds. “That way, you’ll have a better chance of releasing those muscles when you need to.” 

Positions to try to mitigate pain

Although sex is often spontaneous, preparation is incredibly useful. A calm mindset can make a huge difference, but so can using lubricant (water or silicone-based). If needed, Perrett shares that you can also buy penis bumpers, which prevent penetration from going as deep into the vagina. 

A good, old-fashioned pillow can also be a lifesaver for better comfort. She explains: “What you’re trying to modify is the depth of penetration and the angle. If you’re in missionary position, you might want to elevate the hips a bit or try other positions like lying on your side or the lotus.

“Doggy style is challenging, as it does tend to be really deep, but you could do a modified version of that. Think about trying to lengthen the vagina, so bringing your body downwards might help, or lying completely on your front with your partner on top of you and a pillow underneath your pelvis. And remember, there are lots of other, non-penetrative ways of having sex as well.”

When to see a professional

Endometriosis is really characterised by pain, so it can be difficult to know when it’s worth seeking medical help for painful sex. Perrett also flags that pain doesn’t always follow the same pattern for everyone and that for many of us, it’s linked to hormonal fluctuations. “It can be more frequent around ovulation or towards our periods,” she says. “At certain points of the month, you might start noticing that you struggle to release the pelvic muscles, so initial penetration is more painful, or the pain increases in certain positions.”

Vakharia advises speaking to your GP if you suspect you’ve got endometriosis but also stresses the importance of being as honest and specific about the kind of pain you’re experiencing during sex – even if you’ve already had an endo diagnosis. “If you feel you’ve not been listened to then don’t be afraid to ask for a second opinion… It’s not normal to find intercourse painful, and women shouldn’t have to endure it,” he states.

“Seeking medical help can lead to effective treatments and improve quality of life.” 

Images: Getty