One of my earliest memories of Endometriosis like “symptoms” was from when I was around 16. I got my period later than many of my friends and remember bleeding so heavily and being in such extreme pain l ended up curled in a ball or paralytic. I was SO embarrassed and ashamed of what was happening. I was mortified that it seemed as though I wasn’t handling the everyday pain of being a woman.
I truly believed for many upcoming years that I was just a wuss, who couldn’t handle the physical pain of having my period, where it felt like everyone else could. Throughout school, I would write letters excusing myself from school sport/swimming as I just couldn’t bring myself to do it. I’d skip school. I’d cancel plans and sneak medicine from the cupboards at home. I don’t know why I was so embarrassed but I truly was ashamed of myself and my body. I fluctuated in weight and had extreme bloating. I didn’t know how to manage the pain.
Years later, I remember being curled into a ball whilst feeling yet another intense stabbing pain from my back to my front. I couldn’t straighten my body without physically shaking, I was sick from the pain. I looked down and it appeared to me as though there was what I can only describe as a creature crawling under my skin. My right ‘ovary’ seemed to be having (what looked like) a seizure/spasm. From that day I bled for 4 months straight. I then sought help.
After seeing a generic gyno she suggested we do a laparoscopy to see what was going on inside. I was uneducated on the topic, so I went into surgery very blasé. They found a significant amount of endometriosis growing everywhere. My surgeon used the ablation method (burned and scraped it out). Recovery was two weeks, and sucked! I have since found out that the ablation method is not the desired approach and has an 80% reoccurrence rate.
My “specialist” was blunt and ruthless in telling me my diagnosis and followed on to tell me that I most likely couldn’t have kids and that I just had to suck it up, get used to a lifetime of pain as there’s a very high chance it’ll come back and there’s no cure. She told me that she tells people this news all the time and that I needed to just accept it. I never saw her again (even if it was all true, it’s free to be kind lady).
The pain, discomfort, and bleeding returned viciously and quickly. My Mum insisted I get a second opinion. We found a gyno who specialised in endometriosis. Within 6 or so months I was in another surgery, having deep excision (this is the desired approach with only a 20% recurrence rate). I fell pregnant not long after this with my first child. Since then, it has come back and I’ve had to go on to have further surgeries (five total).
I have had more ultrasounds (internal and external) than I could count. I’ve been told to suck it up and move on, I've been called a “junkie” by a pain specialist for trying to find relief. I’ve been accused of wanting to get high when asking about marijuana as a natural relief. I’ve tried it all… physio, warm water, pain medicine, natural oils, massage and heat. I have bled for up to 6 months at a time. I have at times felt like my vagina is “falling out”. I still fluctuate in weight. Sex and orgasms can be extremely painful. My periods are so heavy I can sometimes not leave the house. At times I can’t move my legs properly and my husband helps me to roll over in bed. Ovulation pain is almost as bad as my period pain, but pain can strike throughout my cycle. My pelvis will sometimes lock. I get extremely fatigued. I have issues pooping, especially when it’s my time of the month. I get endo belly frequently which has me so bloated it hurts to move. It absolutely affects my relationships.
I have an amazing support system and am as resilient as they come, but it is painful. Painful periods. Painful leg spasms. Painful bloating. Painful cramping. Painful back aches. Painful bowel movements. Painful sex. Painfully nauseated for days on end. Painfully fatigued. Painful bleeding for way too long. Painfully expensive. It’s just plain painful. Endometriosis is heartbreak. It’s anxiety attacks. It's hiding pain behind smiles. It’s canceled plans. It’s exhausting.
I am 35.
I have had 7 pregnancies.
4 live babies.
3 miscarriages.
5 laparoscopic surgeries.
My next steps are a hysterectomy.
I have spent tens of thousands of dollars finding relief. I am terrified for my daughter's future and won’t stop until I know their future is brighter!
