How to have a great sex life when you have endometriosis

Is endometriosis  hindering your sex life?

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Recently I spoke on Triple J’s ‘The Hook Up’ about sex with endometriosis. I have stage four endometriosis (the most severe kind) and I know firsthand how agonising, draining and life changing it can be. 
I was actually in the Triple J studio in severe pain from recovering from really major surgery but as I’m sure many women with endometriosis can relate to -you just push on through the pain and hope no one notices.

One brave woman called up when I was on air and shared how sex was so painful with her boyfriend but she just put up with the pain to make him happy. It was so heartbreaking hearing her story. It doesn’t have to be like this.

What is Endometriosis?

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Endometriosis is the silent epidemic that one in ten women suffer from yet there’s hardly any awareness out there in the community and not enough research funding into it compared to other diseases with similar numbers of people affected. It has no cure. There’s confusing treatments with awful side effects.
 
Sex can hurt for minutes, hours or days  afterwards. Many women suffer in silence or end up avoiding sex altogether because they find that easier than asking for what they want and negotiating.

For endometriosis sufferers or endo warriors as I prefer to call them–the endometrium -the lining that usually grows inside the uterus- also grows  on the outside of the internal organs and bleeds, shed and multiples in response to women’s fluctuating sex hormones every month.

The blood has nowhere to go so it causes scarring,  adhesions and can twist all the organs as they all fuse painfully  together encasing them in ways that they’re strangling each other. There’s a host of inflammatory and immune responses and problems at play here.

Endometriosis can cause terrible pain at menstruation, in the pre-menstrual stage, at ovulation and for some women can cause agonising internal pelvic pain and a host of other symptoms everyday of their cycle. Surgeons have found  endometriosis in every organ and anatomical structure in the body except for the spleen! This dam disease has been found in the cervix, diaphragm, vagina, lungs, nerves and even inside of cesarean or other surgical scars. In rare cases it can also  invade and grow in nasal cavaty, the liver, brain, heart, skin,  the kidneys, the eyes, pancreas and  bone.

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Endometriosis is  most commonly found in the pelvic/abdominal cavity in particular; peritoneum (lining of the pelvic area), rectouterine pouch (also called the Pouch of Douglas or or cul-de-sac), rectovaginal septum, rectovaginal septum, uterosacral ligaments, ovaries, fallopian tubes, all over the outside of the uterus, including underneath it and behind it, the appendix, bowel, bladder, and rectum.

These endometriotic growths are smart little buggers and act like like rogue agents. They can  reprogram genetic pathways which means they can keep travelling through the body and make their own  blood supply, hormones and nerves.

The Pain of Endometriosis

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Endometriosis causes fertility risks, multiple surgeries, a list of painful symptoms including chronic fatigue.

Endometriosis can cause lower back pain, leg, and hip pain especially if the endometriosis is growing on nerves. When my organs started to fuse together I started getting the most agonising pain down my left leg and could hardly walk. It’s not just pelvic pain!

Endometriosis can cause acid reflux and gastrointestinal disorders and serious organ failure. If endometriosis has been growing extensively on the bowels then it can cause a hole to form and leakage can come out of the bowel. Endometriosis can cause kidney failure and bladder problems.

Menstrual issues are a “taboo” topic and women are often told just to shut up and put up with the pain.  A diagnosis takes ten years on average because of this stigma especially with Doctors being more dismissive of women’s pain. Often a woman has to go to three to four Doctors on average before a possible diagnosis is made.

How to have a great sex life when you have endometriosis

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Put the focus on pleasure and sensation rather than “penetration” and orgasm.

I give my clients specific homework exercises to get this started. It’s contrary to everything our society teaches us about sex but can be life changing for endometriosis sufferers.

Experiment with different positions at different times in your cycle.
If you’ve had a laparoscopy you’ll know where the endometriosis is growing and can work with your body to try positions where the scarring won’t be bumped. Try avoiding deep penetration. Let your partner sit back and not move as you sit on top and take control or try positions where thrusts can only be shallow.

Get out of the idea of “in and out” and embrace different movements. Think  how bellydancers rotate their hips. Get your partner to lie still and squirm around them or just flex your muscles around them.

Go gently! 


GO SLOW! 
Never rush. The more turned on your body is, the more your vagina expands and lengthens. You might have to forget about quickies especially if your partner is especially large.

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Use lots of lube. NEVER use condoms without lube. EVER! If your partner is a bit inexperienced and tries to use a condom with lube then it’s really important you don’t just go along with it. Grab the lube or go buy your favourite! It doesn’t matter how excited and lubricated you are- use lots of lube!
Experiment with different brands until you find one you love. All of the above is if you’re even interested in a dildo or penis inside you. It might be too painful for you and you want to focus on other forms of intimacy. See the next point..

Start thinking outside of the penis (or toy/fist etc) in vagina model. Outercourse is the new intercourse! 

Throw everything out that you learnt about sex from school and pornographic films. Sex doesn’t have to end with penis in vagina and the male orgasm.



Don’t see foreplay as the “warm up” to “real” sex (ie “penetration”). See every intimate act as “sex.”

Try more;  long, passionate kisses, sensual massages, stroking, nibbling, exploring each others erogenous zones outside of the genitals, touching, fingering, mutual masturbation, oral sex, role play, cyber sex, sex via skype, have a warm bath together, tantra sex, role play, kinky consensual fun etc.

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WORSHIP THE CLITORIS! With 8,000 nerve endings at the tip of your clitoris you can have many orgasms with nothing even entering your body. Show your partner what you like. Experiment with different sex toys.

Stop using the word penetration or other violent words like jab/nail/poke/ram.. Try using words like- I’m going to envelope you, grip and milk you. Turn the idea of sex as passive for women on its head.

Stop using the word PERFORMANCE when talking about sex. It’s only relevant for the stage or sports. Sex isn’t an olympic sport.

This is just a brief overview, I go into a lot more detail in skype sessions and in person in my Sydney rooms.

Please get in touch with me if you have endometriosis and you want passionate sex with your partner or just want to bring back the passion into a life often filled with pain. It doesn’t have to be like this.

Art- Kyung Jeon, Belinda Otas, Louie Boutler, Geodarnna the artist, Eugenie Lee

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