Wednesday, 28 September 2016

My life with Endometriosis

Ok so its after taking me the guts of a week to sit and write this since I spoke about Endometriosis on Snapchat.

Have you heard of Endometriosis before?

Well I'm about to tell you what it is, why and my life with it....

Endometriosis is often painful disorder in which tissue that normally lines the inside of your uterus - the endometrium - grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs. ( this is what google says)

So basically every time you get a period this is what happens. In some cases it can happen at any stage throughout the month.
The reason I'm doing this today is to raise awareness on Endometriosis and to know the signs if you have it.

Endometriosis (endo for short) is a non visable disease that's sadly their is no cure for as of yet and can affect your fertility if left un treated.
If you find every month when you get your period that you are in horrible pain and the over the counter pain killers aren't taking away the pain. If you find yourself reaching for prescription pain killers to make it through the day then that's not normal period behaviour.

If you find that each month they become more and more painful, stuck in bed, not being able to go to work or school, feeling pain in your stomach or back, bleeding is heavier or they are becoming irregular then you need to see your GP.

There are treatments available to help with Endo and surgery available just make sure you persist with your GP and make sure they listen.
The reason I'm saying this is because here's my story and why I want everyone to be aware and not go down the road I did.....

I first got my period when I was 9 (this is also another sign of endo) and they where fairly normal ish until I was 11. Things became worse, my periods where so bad with pain I wouldn't be able to go to school. I was always sick. I used to and still do catch anything that's going.
I was brought to my GP and told to just take prescribed pain killers that it was just "bad periods".
     As time went on I wouldn't be able to go to school or go to friends parties because the pain would be so bad even with the pain killers.
From the age of maybe 14 or so things got really bad I was always sick. Always in agony with pain and absolutely dreaded getting my period. I never done a full week of school and when I would get my period I rarely made one day of that week. I would vomit, pass out because the pain would be so intense and bad. Trips to A&E that would be pointless. I would gain weight. I'd have constipation and extreme diarrhoea. When I did make it to school I would pass out in school and would have to be sent home.
As this was on going the doctor would always say the same its just "bad periods" nobody would listen. This isn't normal I don't believe there is such a thing as a bad period!
     I reached 17 and at this point I was in pain everyday both my stomach and back and my stomach was always bloated, swolling and hard to the touch. I had bad pain down my right leg and was very painful to walk. Trips to A&E always happened throughout the years but became more frequent around that age... I don't know how many times they where going to remove my appendix! Once I was filled with pain killers I would always be sent on my merry way.
I was then put on the pill as a trial to see if that would help  at all and it didn't tired taking it each month and then taking the weeks break and straight back onto it. That didn't work so then they tried taking it continuesly without the weeks break and still no improvement.

A specialist then done a laprascopy which is when they put a camera in through your belly button ( this is the only way you can tell if you have endo ) and they found endo. I was then put on a hormone tablet which left me with very bad depression and sent to see another specialist for treatment.
They made me walk across a room and said I had pulled a muscle in my leg to just go swimming and how many times a day would I be happy... No joke that's what I was asked. I was then told to continue taking the medication for another 6 months and to come back and see them. Even though the medication was making me feel so down and depressed. 

My parents then decided they would take me to see a doctor in New York. I was in college at the time studying to become a Beauty Therapist and Makeup Artist. I'd always wanted to do it so I was trying my best to her through it even though it was really tough. 
I went to see the doctor on a mid term break and we spent four hours in his office with him. He asked had I pain down my leg and finding it hard to walk that that was a sign of endo (in some cases). 
That day we decided on a treatment plan to get me though the rest of college and help treat the endo until I returned for surgery. 
He put me into a medically induced menopause along with other medication on top. This would shut everything down preventing the endo for spreading even more and shrink it a little. 
I was never skinny as a kid or teenager but never over weight... That changed when I was put on the medication. I gained a lot of weight and I was in a full blown menopause... Mood swings, hot flashes, cravings, crying, was just a few. I was still in a lot of pain but I knew it wouldn't spread anymore. 
I returned to NewYork 9 months layer mad had surgery. What should have been an hour max turned into 4 hours of surgery to remove the endo. To remove it they can go in by lapraoscapy through the belly button and small incisions around the belly. They then lazer off the endo and burn it off. I had more or less every where on my womb etc. 
It was a tough recovery but the doctor was amazing. I was put on the pill continuesely without a break. If I had a period it would grow again more. 
Even though I stayed on the pill all the time it did grow back and I had it removed another 2 times since then. 

I tried every pill, medication, hormone, you and isn't I've tried it! 
I still suffer to this day with it but I know now what I'm capable of doing and what I can and can't do. 

My weight does fluctuate a lot and it can be hard to shift weight at times. 

I've now decided and started on a gluten, dairy, caffeine and refined sugar free diet to help manage and hopefully improve things. As these food can trigger symptoms or make them worse if you are suffering at that time. 

I'm taking a step in going down the alternative route and holistic treatments. 
I've tried everything else I may as well give this a try!! 

That's basically my story and this is why I want everyone to be endo aware. If you know someone who suffers with any of these symptoms please get them to speak to their GP and if they don't feel like they are being listened to persist and make sure someone listens. We all know our own bodies and we know when something is wrong. Don't let anyone fob you off. 
It took 7 years for someone to listen to me and help me don't let that be you. 
I don't want anyone to go through what I've gone through and if by me telling my story and what symptoms I have or had help someone I'll be happy. 

If anyone has any questions or has Endometriosis and want to tell me what they do to help them feel free to message me. The more we know the better!! 

Thanks for reading this and please feel free to share it if you found helpful or helpful to someone else. 

I'll pop up a part two to this soon regarding the diet and lifestyle change and what products o use if anyone would like to know more. 

Rebecca xxx 

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