health

"My Endometriosis was so severe, I was told pregnancy would give me relief."

If you’re suffering from Endometriosis or experiencing symptoms, always seek medical advice from your doctor for diagnosis and treatment options.

Hi, my name is Charlotte. I’m 26 and have Stage 4 Endometriosis.

A few months after turning 15 I started experiencing the most horrid stomach pains and wasn’t able to stop throwing up. It turned out to be my first period that lasted for 12 days. I was in agony, I couldn’t keep anything down, nothing was helping my pain or nausea, doctors and hospitals weren’t able to help other than tell me I was exaggerating or making it up.

Over the next 18 months each period got worse and worse. I was missing so much school and it was affecting my immune system I would catch anything, no matter how careful I was. But the whole time my mum stuck by me, she went to emergency with me every month and when I wasn’t sick she would take me to multiple doctors. Unfortunately not one believed what I was going through.

Mum would sit there crying, begging them to do something to help me because she couldn’t watch me be so sick anymore. The only reasons they could give us were, ‘You’re young and will grow out of it’, or ‘It’s all in your head’ or ‘You’re exaggerating’.

My teachers got involved and worried for my health, especially after I fainted seven times in one day from the intense pains. But even with their concern and involvement, the best answer we got was that I was severely anaemic. I accepted the fact that nothing was wrong and tried to live my life as best I could when I was well.

pregnancy as endo treatment
Charlotte and her mother. Image: Supplied.

In October 2007 I met Morgan, now my husband. At first I kept my illness hidden from him, I refused to eat around him because eating caused my nausea and pain to become worse and I didn’t want him to see me like that.

ADVERTISEMENT

After moving in with him early February 2008, I wasn’t able to keep my illness hidden any longer. He didn’t understand or believe me – but why would he if the professionals didn’t?

Unfortunately, the same month, my mum was diagnosed with kidney cancer so my illness really didn’t matter anymore. I just wanted my mum to get better. I attempted all versions of the pill, hoping this would give me relief, while I focused on my mum.

Mum was then diagnosed with lung cancer; she became so unwell she ended up in a hospice unable to attend any of my appointments, so I had to go by myself. The doctors where rude and nasty so I decided to stop all visits to any doctors and deal with the pain. I eventually ran out of the pill and noticed that being off the pill my pain was easier to deal with.

On September 2, 2008, my mother took her last breath.

At just 17 I’d lost my rock, my believer, my supporter. I fell into a deep dark depression; I became angry and distant and didn’t want to continue with life.

Honestly, the next few years became a blur; each emergency visit brought a new doctor's nasty comments or a different treatment to try. There were times I was like a walking zombie, and others where my hormones were so out of control and would cause more harm.

Post continues... 

In 2009, We purchased our first puppy - Lilly. She became my best friend; there with me throughout all my ups and downs, comforting me during flare-ups, snuggling up to me when I needed her the most.

Eventually we were told having a child could help, or at the least give me nine months of relief, believing the doctors we decided to try having a baby. Not getting any better or getting pregnant, we started visiting multiple doctors and, again, none gave any real answers nor really cared. I started believing that it truly wasn't in my head when, one day, my now sister-in-law experienced one of my major flare-ups firsthand.

Seeing me screaming in agony, sitting on the toilet clutching my stomach with a bucket in my hand, throwing up and fainting; she was horrified and stated that it looked like I was in labour. Having kids already, she would know what labour looks like and whether what I was going through is normal.

endometriosis
"Eventually we were told having a child could help, or at the least give me nine months of relief." (Image: iStock)
ADVERTISEMENT

Hearing this gave me the strength to try for some answers again.

Having actively tried for a baby for over two years the doctor sent me for a laparoscopy. He didn’t care about my symptoms only the fact I wasn’t pregnant but I was willing to do anything for relief.

April 4, 2012, finally came around. I had surgery and was allowed home the same day. They said they found mild endometriosis, but had burnt anything they could see so I would have at least two- to four-years' relief. At my post-op appointment I was given a half-page of info on endo. The months following surgery my periods seemed to be worse, but I put it down to healing and continued on with life.

In 2013, after being told I couldn’t still be experiencing symptoms, I started working on my depression to see if that would help.

pregnancy as endo treatment
Charlotte lost 30kg in the year before her wedding. Image: Supplied.

In December 2013 I started my weightloss journey preparing for my wedding.

ADVERTISEMENT

Between planning my DIY wedding, home schooling my 16-year-old brother and full-time work, I didn’t have the time to be unwell. But my body was getting worse and worse as the time went on. Morgan eventually became the supportive, helpful person I needed to fight for me when I couldn’t fight for myself. After getting married October 29, 2014, our honeymoon was spent caring for me.

When we got home we visited doctors again. The new reasoning was my weight - I'd lost 30kgs that year and we knew that was ridiculous. My GP sent a new referral and, before attending my appointment, it was stressed that Morgan should go with me and he should describe how it was affecting HIM. The doctor listened to him and agreed I definitely needed surgery to see if the endo was back. Yes, because it was affecting HIM.

On July 22, 2015, I went in for my second laparoscopy. In my room for the night, my surgeon came past and advised me there was a LOT of endometriosis and it was extremely deep so she had to excise it rather than burn it out like normal. She also had to release one of my ovaries which was stuck.

I was now a Stage 4 Endometriosis battler and spent almost the next 8-10 weeks in hospital. The days I managed to work were no way to live a life. I was drugged up on so many pain meds, I could barely move and was struggling to function with the simplest of tasks.

"I never did fall pregnant, which I’m thankful for because having a child just to relieve your symptoms is not a reason to have a baby." (Image via iStock)

While falling back into depression, I decided enough was enough and intensely researched.

Every minute of every day that I was bed/hospital-ridden I was watching every video, reading every article, joining every Facebook group I could find. After a few months I’d learnt that everything I had known about endo was either untrue or just the start of it.

ADVERTISEMENT

From my own research I had found a few things I wanted to trial to see if it would help, so in November 2015 I started my endometriosis diet. Within a few weeks I was working more than being in hospital. I noticed if I attempted to eat anything not on my endo diet I would end up having a massive flare-up.

In December 2015 I received my MRI results. In the three months from operation to scan they could already see that my endo was back. It was like a massive kick in the gut. I refused to have any more surgery and instead decided I wanted to trial the new pill Visanne along with my diet to see if this would help.

Up to today - besides the side effects from the Visanne - this combination has helped me get at least 50 per cent of my life back. I still have my flare ups and horrible days. Even the daily pain - especially in my back, hips and legs - but most days I can handle not having a cocktail of meds. The Visanne has stopped my periods for now so we were hoping it would slow the regrowth, however, scans every six months have shown new chocolate cysts growing and bursting over the months.

pregnancy as endo treatment
Charlotte and her husband, on their wedding day. Image: supplied.

Whilst endometriosis seems to be winning at the moment, I’m not giving up. I am an endo warrior and I will continue fighting this with my amazing support system around me. For now my diet-and-Visanne combo is working to improve my quality of life, so I am opting to continue this path instead of more surgery. After all, this is my body and my life - I’m taking control of it before I lose myself completely.

On January 2, 2017, we sadly lost our furbaby, Lilly. This has impacted me massively as everyone who is chronically ill knows, a pet is part of your family. They do not judge you for your illness or think of you any differently; they love you for who you are and truly make your life better, especially when you spend majority of your time at home.

ADVERTISEMENT

As for pregnancy, I never did fall pregnant, which I’m thankful for because having a child just to relieve your symptoms is not a reason to have a baby. We accepted that we will never have biological kids and hope that one day I will be well enough so we get the chance to help kids in the foster system.

For now we are taking it day by day. Throughout my journey so far I have lost so many friends and family, lost jobs due to excessive sick leave and lack of understanding about my illness, and dealt with so many judgemental people. I try to use this to make me stronger but I have my moments of letting things like this get to me – I am human after all.

We may not be terminal, but is being alive but incapable of living really living at all?

For all the women out there with endo or may have endo I want you to know you are not alone. Find a support group. Start researching and please visit an endometriosis specialist. A specialist is someone who deals with the disease day in and day out not someone who SOMETIMES deals with it.

And most importantly: Painful periods are not normal. A hysterectomy will not cure you. Having a baby is not a cure. The only accurate way of diagnosis is through surgery. There is no cure.

v

Mamamia's Endo Awareness Week, curated by Founder of EndoActive Syl Freedman, shines a light on a disease suffered by one in 10 Australian women. To read more from Endo Awareness Week, click here. If you'd like to find out more information on Endometriosis, Syl's story or Endo Active, visit endoactive.org.au and keep up to date on their Facebook page.

Tags: endo-week , endo2017 , endometriosis , health
00:00 / ???