My Endometriosis Experience

Please feel free to comment on how Endo has effect your life and any other comments or questions you want to ask or talk about.

Endometriosis My Experience

Costa Rica 2010
Limon

Costa Rica
Zip lining
Monte Verde

When I was 13, around the time i started my period I also started being sick, alot after every meal, I didn't understand what was happening and just got on with it, I talked to my parents about it and they took me to the Dr's which i was very reluctant about because of past history with Dr's and family. I remember a very disconcerned Dr telling me that it was 'stress' as i was young and with having exams this MUST be it!
It carried on and i lost a lot of weight from a size 12 to a size 4/6 at my worst, I talked to friends at the time and they would say it was anorexia and bullemia, which made me even more confused because i wasn't doing this to myself but then it is hard then not to question yourself over and over and even when i was being sick thinking to myself am i? I went through hell with it and cried a lot of confusion and worry that i was doing this to myself, the doubts in others and Dr's minds that had put in my mind. I kept going to the Dr's over a year and since i had lost loads of weight sent me for a berium meal and an endoscopy (which was Horrid!!!) i ended up with the berium meal spurting up out of my mouth and all over the floor.
The results were reflux disease, Duodenitis and chronic gastritis and the start of an ulcer.
Whilst this was going on I started getting around the time of the month slightly painful periods but thought this was normal.

This went on yoyo-ing weight, being sick no fail every day, acid levels to the heighest and battling with normal teenage hormones. But saying this I have remained happy (when this all started the first summer i was very down and teary).
I battled with it all the way through college, where i was put on all sorts of medicines (I am very sensitive to drugs of any kind) that made me fall asleep in the afternoons, get hyper, get worse and have mood swings!!, I had various tests and finally told 'there is nothing we can do you will have to live with it!' (being told this at 17 was hard to hear I certainly did NOT want to be sick every day for the rest of my life!) I started to cry with the news and was asked if i wanted my mum to leave then asked me if there was an family problems because she couldn't understand why i was crying!!!!!!!???????
Before I ventured to University I had some more tests and medicines that were no good, and a biopsy twice on both my breasts as i had two small lumps on each side, I experience tender breasts very often, they were  benign thank goodness!!!

I still battled with everything in Uni but i had learnt to live with the being sick daily and even though my periods got exteremly painful, heavy, caused dia and left me squirming in bed for 2 days I still thought this was a normal thing to go through so just got on with things and didnt go to the dr about it.
At the end of my 2nd year at Uni i began to experience getting ill all the time, my immune system was shot!, I was getting dia and constipation on and off, tonsilitis and gastorentoritis through-out the year. By my 3rd year i was having faint hints of the bad year that was about to come, needing a wee often but as usual thought about it but didn't think it was too much of a problem.
In the 4th year i was going through the worst year with everything getting worse, I was steadily finding it harder and harder to leave the house due to needing the loo all the time, I visited the Drs but they didn't really want to know, my social life and friends went down the pan, I didn't know what was going on it was all over the place! I had ok days and i had days where there was no way i was going anywhere.
I decided again that my body will just get over it in time. Since the Drs didn't think it was serious why should have i?.

In 2010 i was hospitalised for 4 months after my boyfriend and I went on an adventure to Florida, Costa Rica and Mexico.

 I made the most of my holiday and had an amazing time but I had a really irritable bladder and a random bowel problems still which we put down to the water in Florida when it started badly.
But trying to go everywhere still and managed most events which i was over the moon about, but the long coach trips with no toilets were a nightmare on my bladder.
When we got to Mexico we were staying there for a week and didn't manage to do a lot at all, the dia became an every day visitor and the pain was apparent too, the need for urination was happening straight after i had left the toilet seat! my body was going mental!!

On the plane back to Gatwick i experienced excructiating abdominal pain for 4 hours and they were only getting worse, we landed and exited the plane, I could hardly walk and by the time we came to passport control I was bent over double with my boyfriend helping me. I asked him to call an ambulance and I was at Surrey Hospital within 30 minutes, ironically i remember Eliza Doolittles 'Pack up' was playing whist i was writhing in pain. I was at Surrey for less than 3 hours and given pain killers, I was tired and just wanted to sleep so i checked myself out, Mistake?

My bladder and bowels were so bad going out of the house without a toilet was a complete and utter nightmare! 

The dreaded Cookies!

Well after 3 more Months of this torture just after fireworks night, I made cookies (this is relevant trust me) that night my little nephew was so sick and so was I, so I put it down to the cookies!

The next night i kept being sick, It didnt stop and then the diarrhea started just at the right time, I was a real state, so my parents called the ambulance, I went down hill quite fast and started bringing up Green sick, They gave me multiple IV Drugs which made the pain worse (which later found i was allergic to Morphine but they just kept on giving it to me it made my pain heighten and increase substancially, till i was alive after 4 months of hell, to refuse it)...The Dr wanted to send me home thinking it was a disease I might have picked up from Mexico!

 We found out through multiple blood tests and an artery blood test (which are so painful) and two CT scans that the Drs found air around my heart and a 2cm perferation in my esophagus from where I had been sick.

I had to have a laparotomy, where they found a 10cm ovarian cyst and enlarged glands through-out and fluid in my abdomen.

After umming and ahhing and a lot of green sick later and all the pain, blood, and moving me around after the op, visiting ICU, HDU and a couple of wards they found out i had caught Clostridium difficile (C.Diff) where I had green diarrhea.

I had 5 tubes at one point attatched to this out of my neck connected
to the wall! it wasn't pleasant by any means
sleeping was quite hard.

I was moved to a private room (i was moved loads!) because of contamination spores, I had a feeding tube in my neck attactched to the wall and most of the time i was in a little world of my own because of the drugs. 

Christmas 2010
I was looking forward to the christmas meal sooo much
took one bite and had a big relapse

I was up and down having pain and extereme sickness relapses probably because of the drugs , all in all:

Paracetamol 

Clexine

Ranitidine

Fortijuice/sips

Callagen

Codeine

Oramorph

Ondansetron

Cyclizine

Dicycloverine

Omeprazole

Mirtazapine - only taken twice it caused paranoia, panics and deep sleep, Not Good!!

mybentyl

mebeverine

TPN

Morphine

Tramadol

 Buscopan

boney me....ek

Peppermint Capsules

Vancomycin

Pethidine

After many tests they were running out of them the only one i wasnt sent for was a colonoscopy which probably would have been the best ones since all the pain was around the abdomen and intestines.

The Drs Diagnosis given everything was IBS of the Digestion System Hmmmmm?? we called him the IBS man because he has diagnosed a couple people we know wrongly my mum for one! diagnosed IBS annd 7 years down the line find a leaky heart valve and a stomach ulcer caused by taking asprins perscribed by IBS man for her 'IBS and depression' that apparently she had had!.

After 4 Months I was dispatched 48kg light and boney...horrid

Trying to live my life normally which was quite hard I elliminated Dairy from my diet and found my stomach acid and daily throwing up had lessened (not completely) the bladder, bowel and abdominal pains still apparent.

A year later I was admitted to hospital again after servere abdominal pains again!! and after CT scans found enlarged gall duct and fluid in my abdomen. They had no idea why either, and later put it down to IBS and a full bowel.

my second christmas in March!

I still didn't believe I had IBS and i was still having relapses so I went to my gynecologist and with a internal examination diagnosed me with an over-active bladder, Adhesions, endometriosis and......yep you guessed it IBS of the digestion system!! theres no getting away from it!.

So now a year after the whole fiasco, after appointments and dietitians I have basically tried to work it all out for myself and there has been alot of ups and downs and serious pain along the way!
Now i am just waiting on the laparoscopy I have had the pre-op (i will tell all when i go for the operation)

Now I am just trying out experimentational recipes to lessen the pain, and different medicines to see if that helps too, I still find it hard some days and the pain comes randomly sometimes if ive eaten something i shouldn't have but sometimes i have no idea why. I am also sick still but i think that just seems to not like too much liquid and it is random but it isn't after every meal anymore which is great.

I will be posting recipes, information and things the i find helpful on here, so join my blog and you will be notified when I post.

Thank You for taking your time to read this and hopefully I have made you more aware and that this change will make your life a little easier.

Check out the free from receipes blog pages i have set up for you 

I hope your experiences have been less traumatic than mine

x x x