"Why is the role of sex and intimacy a women's responsibility and why isn't endometriosis, pelvic pain and pain period and female experiences a consideration when it comes to her body and pleasure?"
- Amie Rule
- Mar 29
- 6 min read
Updated: Mar 30
Hi, I’m Amie,
I have endometriosis and adenomyosis. I also have fibromyalgia and cycles of fatigue. Long term pain has causes immense pressure on my entire body, including my mental, physical and emotional body. It also is a huge financial investment which is rarely discussed.
I haven’t shared my endo story but with Endometreosis Awareness Month in March and alongside the launch of my book “Breaking the Rules of Pain’, its a perfect time to share my story and be one of the many women, 1 in 9 women in actual fact, to live with endometriosis.
What is Endometreosis?
What is Adenomyosis?
Adenomyosis is a condition where tissue similar to the lining of the uterus (endometrium) grows into the muscular wall of the uterus, causing an enlarged uterus and potentially heavy, painful periods. Currently the only cure is removal of the uterus.
What are the current statistics?
Approx 1/9 women will be diagnosed with Endometreosis.
Here is my story….
I have had painful periods since I was 11 (circadian 1991). 11 is the current age my eldest kid, my beautiful son and I often look at him and see just how young and innocent he is. We forget just how young and innocent many females are in their pre-teen era and having to deal with an increase in hormones, navigating social complexities whilst we as parents are trying our best to ensure that they simply don’t grow up too soon. Throw painful periods on top of this for females.
At 11 years of age, I not only was young but looked so young and I was ignorant on how to navigate the complexities of not only having my periods but heavy periods which saw that I bled through and was in crippling pain. Dealing and managing with adolescent shifts in hormones was one thing, but the fear of bleeding through and staining my school dress was a huge fear. I would bleed 3 times a month, sometimes for a week long so there were times I was bleeding for weeks out a month. It was exhausting and painful.
Due to my lack of family history (due to being adopted), I had zero family medical history I could use as a reference point. This meant we were going in blind. In 1994, there was so little awareness of Endometreosis. There was an inkling I could have it but without the proper testing which back them was surgery, it couldn’t be diagnosed. At 14 years of age, I was placed on the pill. I hated it and it caused huge hormonal outrage and an on surge of emotions no one was prepared for. I felt out of control and I hated the impact the pill had on me feeling in control….
Over the years, I learnt to deal with the pain but the hormonal headaches, fatigue and heavy periods continued. I had different scans which speculated potential causes but nothing concrete. I simply got on with it and managed it the best way I knew how.
Without a doubt, each month varied but most would see me work from home to mask my symptoms. For a large portion of my life, I worked with male managers who I was very open and transparent with and whom I would tell I had my period. I would watch them within their discomfort, in actual fact, a part of me squealed in what people would consider oversharing, but in actual fact, is simply a normal experience for women. In saying that, my male counterparts would generally support me. Understand no, but support yes. I often found it was women who didn’t experience any symptoms of painful periods who lacked sympathy and empathy, and who often discounted or down played my experiences. After a while, you simply learn to get on with it
Endo and adeno can impact fertility. To this day, I know how fortunate I am to have two healthy beautiful kids. Whilst this isn’t a story about my birth experiences, I did experience considerably pelvic instability and pubic symphysis during both pregnancies. With my second baby, I had difficulty walking due to crack fractures within my pelvic. The pain was so considerable in my pelvis that I couldn’t feel my contractions properly. I also had two prolapses. The rehabilitation was long and arduous and still to this day I have pelvic pain, not just from my pregnancy but due to my endo and adeno.
Endo and adeno can also impact sex and intimacy and I find, even to this day, in 2025, there is little discussion around this point. The stigma attached to this means that women often struggle with this alone and hide in shame, especially around the old verbiage that its a women’s job to satisfy her man and when she doesn’t, she’s to blame for him straying. This was very much implied in my first marriage when I was criticised by a marriage counsellor who advised me that it was my job to be intimate and satisfy my husband. Despite me sharing the reasons why intimacy had been impacted, she implied that our marriage breakdown was due to my lack of intimacy but without any consideration for my experiences and the fact that I. Mind you, I hadn’t even managed to talk about my sexual trauma. It didn’t matter to her. Her finger pointing and her blaming is why so many women sit in guilt and shame. Suffice to say, I never went back.
After my babes, not only did my period pain worsen but I started experiencing ovulation pain that was also crippling. I would and still have crippling period and ovulation pain for 1-3 weeks of my cycle.
In 2020, at 40 years of age, I was finally diagnosed with endometriosis and adenomyosis. I was told my only option was to have the Mirena, a copper IUD inserted, in which I declined for personal reasons including the fact it had taken me years to get a regular cycle and I simply didn’t want something foreign inserted in me. Despite saying no countless times to numerous doctors and specialists, I was guilted heavily. Even as I was being wheeled into (my first ever) surgery, the obgyn was still pressuring me to have a Mirena inserted whilst I was under anaesthetic. I adamantly declined but remember waking hysterically, wondering if she inserted a Mirena under my will.
It made me wonder, why there is such a push on the IUD and what type of rebate medical practitioners are obtaining to promote this so heavily.
For 33 years I’ve endured heavy and debilitating symptoms.
Fast forward to today. I recently had a pelvic scan (last week). My adenomyosis and endo is manageable although I have symptoms still which need to be managed. I still have chronic pelvic pain but with exercise and pelvic floor attention, this is improving.
The management of my endo and adeno is long and cumbersome. Some days and weeks are debilitating. At least one week per month I’m mentally out of action with hormonal migraines and fatigue. This not only impacts me but my whole family, god love them. I also am adamant in openly sharing that I have my period, in order to normalise and remove the shame for future generations. My husband understands just how much all of this impacts intimacy and also understands his role to ensure that i feel safe, seen and heard, without judgement and pressure, because it isn't simply a women's issue, but one that impacts both of us.
March has been the most phenomenal month for awareness and media coverage around Endometreosis and chronic pain. Women everywhere are sharing their stories and possibly, for the first time ever, are being listened to, heard and validation. There are so many amazing women advocating and sharing their story and so many partner’s, standing by their female counterparts side.
But it doesn’t stop here. We need to keep sharing and to keep talking.
We need to be heard.
Women need to let go of the shame that is attached to female conjuring such as painful periods, perimenopause, endo, adenomyosis, chronic pain, painful sex, pelvic pain, infertility.
Other symptoms include:
Painful Period
Painful ovulation
Impact intimacy due to painful sex
Painful pelvic pain
Impacts hormones
Triggers the nervous system
Creates a huge stress response within the body and pain.
Creates fatigue
Causes social isolation
Impacts fertility
Impacts digestive system and bowels
Impacts the bladder
Impacts the brain.
I share my story because part of my healing journey is to no longer hide in shame for what has occurred in my internal body.
Instead of allowing societal shame and judgement to dictate my life and story, I now change this and show my body love.
Thank you for being here.
My book "Breaking the Rules of Pain", my personal and medical memoir and how to break the societal narratives around pain, is now available on preorder.
Comentários