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Life with Endometriosis and PCOS with Jess from Endo Warriors Aotearoa

Hi, I'm Jess, and I have had Endometriosis and PCOS for almost 20 years.  To know about how I was diagnosed you need to understand my journey to being diagnosed. 

When I was about sixteen, I started to experience a lot of pain when I got my period and during my ovulation period. It seemed to get worse and using tampons was very painful. When I was young and at school, I never said anything as I thought it was normal and I had been taught not to talk about these things. I was raised by my father, so he did not know anything about periods as well as going to a catholic school. Even when I was 19-20 years old, I went to doctors, and they said it was normal. 

I was in my very early 20s when my Endometriosis was officially diagnosed. 

 One day I was in a lot of pain, and I knew my period was coming so I walked from home to our local supermarket to get some pads, the 15 min walk that I had done many times, was a walk I will never forget.  The pain I was experiencing seemed to be getting worse and worse. It would come and go, and each time it would hit me harder. I had to sit on the footpath a few times screaming due to the pain, I had never experienced anything like it before. When I finally got to the supermarket, I felt like someone had pushed me over and I was falling in slow motion and then suddenly, I felt all the blood coming out, I tied my jersey around my waist and jumped into a taxi and went home. 

What I did not know then was that I had just had my first pregnancy loss. I took myself to the doctors with what had come out of me (I was 20 and still did not know much about periods etc.) I thought I was going to die but then the doctor told me that I had just lost a baby and that I should be more careful with who I sleep with. That was when the judgement and the medical gas lighting started. The doctor had dismissed me so easily as if what had happened was normal even though he did not know I was in a long term relationship. I left in tears and was heartbroken. The next few months my periods got worse and worse, and I started to be in pain when I did not have my period. Due to this doctor, I thought it was normal and I was being punished for my sins. Eventually I had seen the same doctor multiple times until one day I decided to see a different doctor. The doctor I had seen said what has been happening is not normal and in fact she said, “I think you may have something called Endometriosis” She referred me to a Gynecologists who said I needed surgery. They had performed the surgery and confirmed I had a very bad case of Endometriosis and that they had removed a lot of it. Mind you, his tone was very mellow and uncaring. The surgeon had told me that “you will never have children so you should think about having a Hysterectomy”. Those words broke me more than anything in the world. I had always wanted to be a mother and I was raised being told I need to know how to cook and look after my husband and my kids.  

From there things got worse, then they got better, and then worse again. My Endometriosis came back and I was then diagnosed with Depression and put on Prozac and over the years the doctors told me to 

Lose weight 

Eat better

It’s all in your head 

Get pregnant

Stop eating meat 

It’s all in your head 

Go on the pill 

It’s just your depression take more Prozac 

It’s all in your head 

Go off the pill

Try the marina 

Remove the marina

It’s all in your head 

Don’t drink any liquid a week before your period 

Your too young to have Endo, it’s in your head (even though I had surgery to confirm it)

It’s not end its anxiety 

It’s just your IBS

At least it’s nothing serious 

I found it hard to get into a relationship as being young and telling someone I can’t have kids was hard. Between the ages of 25 and 38 I had SIX more surgeries for my Endometriosis. I had seven miscarriages (one being IVF) and one Ectopic pregnancy with emergency surgery. Every loss took its toll on my body. Though at 32 I was very blessed to have my son, who is now 10. I bled throughout that whole pregnancy and had never been more scared in my life to lose someone I had not even met. These factors took its toll on my marriage that eventually ended late 2018. My bleeding started again in January 2019 and for months after that it never stopped. Some days I would go through a box of super tampons a day. Between the cost for doctors, period items, time off work and being a single mum, the cost was out of control. 

In July 2019 I decided to get a Hysterectomy. After the surgery it was confirmed, I had Adenomyosis. The recovery did not go well and 6 months later it was confirmed my Endometriosis was back. 

Endo Warriors Aotearoa was created in the early hours one Sunday morning back in February 2020. I was in so much pain, had been in and out of the hospital, and was not being listened to and was tired of feeling alone. I was not allowed to work anymore, and I was struggling to care for my son. I wanted others to know they are not alone. I wanted to offer help and support others like me. 

It started as a Wellington group but very fast became an NZ group. I have/ had Endometriosis, PCOS, Infertility, Adhesions etc. For almost 20 years and like most, it has not been an easy ride. It’s like a roller-coaster you can’t get off. More recently (the last 2 years) I have been diagnosed with other illnesses and am under various specialists at the hospital trying to find answers and get to a point of being more manageable.

I am a warrior like you. I know what it is like to have to fight for answers. I know how hard it is to not be taken seriously by doctors, family, and loved ones. I’ve been where you are, I am where you are. Endo Warriors Aotearoa supports all genders that have Endometriosis.

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