I am 1 in 10; My endometriosis story

Hello everyone,

Today is the first day of Endometriosis Awareness Month.

Because of this I would like to share my Endo story.

I am 1 in 10

I was diagnosed with superficial endometriosis in June 2020, during my surgery they found superficial endometriosis on my bladder, ligament, douglas and peritoneum. They removed the endo and I thought the years of chronic pain and heavy periods would be over, but I was wrong. After surgery I never fully recovered, my pain never went away and only got worse throughout the next 2 years.

Every time I went back to my doctor saying my pain got worse and I was suspecting endo near my bowel and adenomyosis (endometriosis in the muscular wall of the uterus) my doctor dismissed me and my symptoms. Unfortunately this is the reality of dozens of women worldwide struggling with endometriosis symptoms, to this day doctors still normalize these symptoms taking getting a diagnosis 8 years on average after first experiencing symptoms.

After my first surgery in 2020 my bladder got damaged and I’m now struggling with incontinence on top of all the other chronic symptoms I already struggled with due to Endometriosis, these include heavy cramps, chronic pelvic pain, central sensitization, chronic fatigue, difficult bowel movements and bladder issues.

After 2 years I asked for a second opinion with another hospital specialized in deep endo. I had an MRI and after a month or so I was scheduled for another surgery.

This time my endometriosis got severe, I had 2 surgeons operating on me finding a mess going on in my belly. The doctor said it was really bad considering I had another surgery only 2 years prior. This time they did not only find superficial endometriosis but deep endometriosis (deep endometriosis means the endometriosis tissue grows inside of the organ/tissue/muscle instead of on the outside layer of it) There was deep endo on my ureter and pelvic wall, my bowel was completely stuck to my abdominal wall, my ovaries were stuck together all because of adhesion, luckily they removed all the endo and adhesions.

My recovery is going well and I finally can say I am pain free, my chronic pain doesn't affect my life like it used to anymore and I can slowly start healing and working towards getting my life back.

Endometriosis is an invisible illness, my family struggled to understand what was happening and why I was in so much pain, they thought like many others it was just having a heavy period, they didn't understand it was taking over my whole life, limiting me in so many ways, many times I was told I was just lazy because no one saw my pain, no one saw what was going on inside of my body. It doesn’t only affect the body but it also affects the mind. I felt misunderstood, alone, angry and sad. I didn’t want to be chronically ill, I didn’t want to change my life and adjust to my new reality, I had to give up many hobbies because my body just couldn’t take it anymore. It’s very sad to see how not many people speak up about the grief someone with chronic illness goes through, grieving their old life, the things they had to give up.

I hope my story helps others struggling with this awful illness to feel less alone. You are heard, you matter and you have the right for treatment and to be taken seriously. This type of pain is not normal. It’s okay to be angry, upset and sad. It’s okay to take things slow and to have bad days. Don’t give up and keep fighting for the right help.

I hope one day we will get a cure to this illness so we can finally say we overcome Endometriosis.