'For Me, Sex Only Meant Pain': Sex, Intimacy and Endometriosis

In december of 2020, I began my recovery journey, but my tryst with endometriosis goes back more than 10 years.

The scars outside have healed, in less than a month after the surgery. However, I was left to deal with a heap of discomfort, occasional pain, and the trauma of having endometriosis- something I know I’ll have to live with for my entire life.

Denial Is Not Just a River in Egypt

My journey has been especially rough because I lived in denial of the fact that I had chronic pain for more than ten years.

Each month during my menstrual cycle I had unbearable pain, felt feverish, and practically remained ill before and after my periods. I also felt depressed.

However, I never skipped a day at work no matter how unwell I was. In fact, I never even missed my voluntary work assignment or cancelled any social event even though I was struggling with intense pain. I think I just wanted to prove I was strong;

There was a time when I was away from my family for a work assignment and lived in a hotel in the Middle East for a few months.

During this time, I ended up in the emergency hospital care for several hours with chronic pain, and I still showed up for work the next day. Even then I did not accept I had a problem, and I never thought to see a gynaecologist at that point.

"When I now reflect, I don’t have the answers to the question of what I was trying to prove, why, and to whom."

In retrospect, it probably also had to do with the notion that as women we are born to experience pain during our periods, childbirth etc, and we just accept it.

I lived through it, and accepted it as a part of my life. Warning signs and red flags felt like they were just part of my life.

This brings me to sex.

Perilous and Painful: What Sex Shouldn’t Feel Like

Now when it comes to my sexual health and life, I sadly have to accept I suffered in silence.

I got married at the age of 26 years to my childhood sweetheart, and in my ten years of marriage I can count the number of times I had sex.

I found sex very painful and as a result, my husband and I never ended up having a satisfying sexual relationship. My husband never complained, but I felt guilty all the time.

I did not share with my husband how I felt even though he has been my childhood friend and biggest ally in everything I did or thought in life. I was ashamed too, because at that age all my friends could not stop talking about their sex life and the joy and passion it brought them.

I, on the other hand, felt stranded.

"I pretended to ignore the conversation, or just wore a mask and lied."

At one point, I even thought I was asexual just to give validity to my feelings.

The reality was that I had a cyst growing each day, and it made sex extremely painful.

Eventually, I ended up talking to a couple of colleagues who said they found sex painful and did not enjoy the experience, and it consoled me that there are people like me who do not enjoy sex. I was finally able to tell myself that it was fine to feel this way.

"When I read about endometriosis now, I see painful sex is a key symptom."

In only a few months after the surgery, I was able to, for the very first time, enjoy sex and not dread the feeling of excruciating pain during and after. And afterwards, I did not have to go to see the doctor and be sent back saying I had a urine infection.

There Is Life Beyond Pain

Since I got properly diagnosed, and got my surgery, life has changed.

My diet had to change, I have to manage my stress and my hormones need to be managed one way or the other.

My surgeons did their best to fix the situation, however the journey is not over. It’s a condition I will have to live with forever and that is something I have to make peace with.

I still have the fear of my intense pelvic pain coming back anytime, and that hysterectomy may be on the radar at some point. My husband feels worried when I bring up the topic of doing long travels for work.

Me being alone in hotels alone and the possibility of chronic pain coming back is something that causes trauma to both of us.

"But, my journey to recovery and a better life began with acknowledging that being in pain, especially period pain, is not normal."

I would always recommend each menstruating person and each parent to know about menstrual health.

If you are suffering from pain each month during your periods, please see a doctor and insist on a detailed investigation. I always thought I had light periods and regular ones and I had nothing going on underneath.

Well, there is no measurement to the intensity of pain and this is where gender inequality again makes its way in our life.

We do not know when to seek help, when to insist to doctors that we understand our body and problems the best and ask for detailed examination.

"I should also have gone to a sex counsellor and not suffered in silence for no fault of mine and there again the culture of stigmatising sex became a blocker."

Living with chronic pain is not easy, what is easy is to get help in different ways - find therapy, connect with people with lived experience and make healthy choices in lifestyle. One thing anyone needs to avoid is to avoid over-reading and processing information from Google.

My most important lesson from this experience is we need to rest and recover when our body asks for it

(Puja Mitra is a People professional in the United Kingdom. She is a champion of diversity and inclusion in her professional and personal space.)