Living with Endometriosis

by Jess

Jess Endo Journey

 

 

 

Hi, my name is Jess!

I am a 22 year old female, currently suffering from severe endometriosis, PCOS, endometrioma cysts, frequent Hemorrhagic cysts, chronic pain and nerve/tissue damage. So far my journey has been long and hard.

I always had extreme pain when I first got my period when I was very young. I would do what most suffers remember too, such as, pass out from pain, be unable to do anything, throw up and be extremely sick. I presented to the hospital many many times with severe abdominal pain, when I was the age of 13-17. They always passed it off as indigestion, gas pain, period pain and at some points “depression”.

I came back to the hospital one day when I was 17 because I had been in extreme pain and was starting to be unable to breathe. My dad who believed in my pain took me to the hospital and they found a huge Hemorrhagic cyst. They did not remove it but it slowly burst and bled out in my organs leaving me with extreme pain and probably a cause of why my endo is so bad. From then I got the diagnosis of PCOS, learning of the consequences and suffering from the symptoms.

 

But it got worse

In 2016, I was diagnosed with stage 4 endometriosis and operated on, with endometriosis found on every organ: pouch of Douglas, multiple lesions on both my ovaries, all over pelvic wall, Fallopian tubes, bladder, bowel, rectum, pouch of Douglas, uterus and more.

They removed it as well as draining many cysts. Less then 6 months later I was operated on again despite my efforts with many hormonal therapies and having the mirena. They found stage four again and I suffered an awful recovery with severe internal bleeding not allowing me to walk or straighten up for a month.

This year in February, after struggling to find a surgeon who would take on such advanced endometriosis with the knowledge of it being on the bladder and the bowel and perhaps moved up to my respiratory system, I underwent my biggest surgery yet which was 5 hours. They removed endometriosis that had spread every place again, except this time my colon was attached to my abdominal wall, my uterine cavity and my left ovary to my pelvic wall, and a hole found on my right Fallopian tube. Also fibroids were removed.

 

7 weeks later…

… just as I was fully recovered, I had extreme abdominal pain and was found to have another huge Hemorrhagic cyst on my right ovary that was so big it was blocking my organs such as my bladder not allowing me to go to the toilet for a week and a half. My surgeon did  emergency surgery on me a week later due to the fact that it was bursting and growing, leaving lots of free flowing blood and blood clots. When she opened me up in surgery, unfortunately she found stains on my pelvic wall that resembled endometriosis so she removed that, removed the cyst and unfortunately found multiple adhesions. A week after the surgery I am back in hospital with a flared up liver, extreme pain, vomiting, low blood pressure and have lost a lot of blood. I would love for endometriosis to be more well known and more understood.

 

Adhesions from endometriosis can be life threatening

They can cause blockages, as well as having multiple operations and bad endometriosis or PCOS, you can have many issues with your ovaries such as twisting ovaries which cut off the circulation and can also be life threatening. Endometriosis actually has the ability if it keeps returning and keep being mistreated, to fail organs. It has been found on every organ except the spleen.

I completed a CT scan yesterday, and tomorrow we will do an ultrasound at the question: has my endometriosis moved to my liver and why is it so flared up and painful?

Endometriosis is also life threatening emotionally. It ruins relationships, it ruins jobs, it ruins women’s self confidence, body image, motivation, makes us extremely tired all the time because our body is trying to fight this awful disease but we can’t sleep because we are in so much pain! It is not fair to any women to have to go through this terrible disease.

I am 22 and I have already endured 4 major surgeries and have become conditioned to hospital beds more than my own. I want women around the world to feel less alone, with better management, understanding, correct treatment and for the world to understand so they don’t feel anymore loss of relationships and suffer consequences they never asked for and don’t deserve.

Endometriosis can wreck havoc on families and so can chronic pain. Everyday is a struggle and being so young I wish I was treated years ago because it has taken years away from me. I still have hope that the research it coming out more but I want more awareness to be raised so we don’t loose anymore beautiful women, less suffering, more understanding and more sufferers realising how beautiful, meaningful, brave and strong they really are.

 

Jess xx