“Let’s talk about sex, ba-by!” … And my lifelong dream of starting a column with a Salt-N-Pepa text has just come true. Now that I have your attention, how about we talk about intimacy and endometriosis?
One of the defining symptoms of this disease is painful intercourse. It’s a life changing, extremely emotional, and very disturbing side of endometriosis.
The first time I had pain during sex was around 2009. It felt like I was being stabbed. The pain took my breath away and didn’t let up, making me feel terrible for hours. From then on and until my excisional surgery in 2017, it hurt almost every time I was intimate. Sometimes I felt a little uncomfortable; In other cases, the pain lasted for hours, forcing me to lie down and cry.
It was slowly breaking me emotionally.
I felt like I was letting my partner down every time I said no to sex. I felt alone and misunderstood. If I confided in someone, they would advise me to make an effort and consider my partner’s feelings. I was told to try endless things as if my insides wouldn’t hurt. When I explained my pain or mentioned that sometimes my skin ached, I looked in disbelief.
I was only diagnosed with endometriosis in 2016. This meant that for years I was convinced that I was flawed. I wondered if it was all in my head. I was sure that I got “it” wrong – that I was a lazy friend by not really making an effort to fix my problems.
Unless I wasn’t a bad friend, I was in pain.
Now, more than ever, I am aware of every sensation in my body as well as the damage that previous beliefs have done. I know my pain is real and, for many days, quite unbearable. Most of all, I know that the power from painful sex will only hurt me both physically and emotionally.
When my partner felt disappointed, I felt broken, worthless, and in pain. When others thought I wasn’t trying hard enough, I read countless articles and books and spoke to therapists who failed to “fix” me.
I’ve cheated on myself so many times. Now I swear I’ll never do that again.
In any intimate relationship, I will put myself first.
My own comfort and health should be my top priority. I am the one who follows strict diets, gets examined by doctors, and undergoes an operation. Conversations about intimacy should help me relieve my pain and emotional stress.
I will not explain my illness to every new person I meet.
It’s a strenuous exercise. Yes, openness is key to a healthy relationship, but that doesn’t mean I lose my right to privacy. I can decline something without having to explain myself in detail or share my medical records.
I won’t consent to sex when I know it’s going to hurt.
If a partner gets upset about a lack of intimacy after explaining how much it hurts, they need to deal with those emotions in a healthy and mature way. Projecting your frustrations on me is a drain on my sanity.
Jarvis tries to look cute for Valentine’s Day and beyond. (Photo by Jessie Madrigal)
I wish my disturbed body hadn’t made others reject me, but it does.
To be loved as a whole, complex person and not seen as a burden is one of my dreams. I don’t know if that will ever be possible. But I know this much: if someone has a problem with how I have to have sex, they can let themselves out.
Endometriosis patients do not need guilt or self-blame.
If someone cannot see beyond our physical symptoms or takes our limits personally, this is their problem. We never chose that. We all dream of a healthy and comfortable intimate life. Yes, endometriosis complicates things, but this topic is especially important to those of us living with the disease.
All we want is a happy, loving session with the person of our choice, but our painful insides are disturbed. Does that break us, make us difficult or unworthy of love?
I say a big fat no to that.
Note: Endometriosis News is strictly a news and information website about the disease. There is no medical advice diagnosisor treatment. This content is not a substitute for professional medical advice. diagnosisor treatment. Always seek advice from your doctor or other qualified health care provider with questions about a medical condition. Never ignore professional medical advice or delay your search because of something you read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews, and are designed to encourage discussion of issues related to endometriosis.
Jessie is a writer and lives in the south of England. She was diagnosed with complex endometriosis from the age of 12 in 2016 after two decades of chronic pain, PMDD and other health problems. She is a lifestyle and science writer, but has also written several scripts and short stories. She’s also a lip-sync assassin, coffee snob, and Madonna’s biggest fan. In 2019 she ran the London Marathon, although her favorite pastime is curling up under a duvet with her two sausage dogs nearby. She writes about periods and endometriosis because she wants to help improve the lives of people diagnosed with the disease
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