Ok so we've all had the really really bad days where we feel so sorry for ourselves living with Endo.
But what is it that makes us get up & get on with it anyway?
The fact that life goes on & we should try make the best out of it while we can as we know that there are much worse things that could be happening to us? I definitely think so.
So the next time your having a bad day think how much worse things could be for you & keep your chin up. Most importantly stay positive! Look to the future. It doesn't have to be a bleak one. It will be what we make of it!
Sunday, May 2, 2010
Wednesday, April 28, 2010
Jealous of my Endo? Wanna swap??
Over the years I have noticed increasingly that certain people are actually jealous of my Endo. They seem to think that I get more attention than them because I have this disease even though I am a very private person & only my family & close friends know the full extent of my day to day challenge.
Do people really understand what is to be diagnosed with a disease you can't control that affects you so much? I don't think they do, especially people who have never been ill in their life. If anyone should be jealous it surely is those who suffer pain & stress & anguish over certain aspects of their life because of their own diseases & not those who in our eyes have a full clean bill of health.
I cannot imagine why anyone would wish this illness on themselves or any other for that matter. It is a constant 24/7 disease & does have an affect on most parts of your daily life.
For those who have this disease just know that you must stay positive throughout, even though it is very difficult at times, ignore people who think your getting more attention than them & believe me when I say that you will find out who your true friends really are.
Do people really understand what is to be diagnosed with a disease you can't control that affects you so much? I don't think they do, especially people who have never been ill in their life. If anyone should be jealous it surely is those who suffer pain & stress & anguish over certain aspects of their life because of their own diseases & not those who in our eyes have a full clean bill of health.
I cannot imagine why anyone would wish this illness on themselves or any other for that matter. It is a constant 24/7 disease & does have an affect on most parts of your daily life.
For those who have this disease just know that you must stay positive throughout, even though it is very difficult at times, ignore people who think your getting more attention than them & believe me when I say that you will find out who your true friends really are.
Saturday, April 24, 2010
If you start something you should finish it- well that or have someone else finish :-)
I'm still not sure how it happened but it started with me adding a new post to this blog this morning. I changed the layout, colours etc.. & BAM I'm painting the en suite!
The many joys of having my mind. I've been feeling really bad the past few days. Have been in a lot of pain etc.. & basically felt a bit useless. So low & behold I decided the bathroom needed to be brightened.
We already had the paint out the back so I thought why the hell not.
Got the first coat on. Part of the second while Kevin was glossing the bedroom windows & frames etc. Then my shoulder kicked in. Felt that lovely burning sensation you get when you've over stretched.
Anyway Kevin took over for me told me to rest up & is just about finished the painting now.
To be fair though I did wallpaper the hall, stairs & landing last week & glossed the stairs, banister's & newel posts. In my mind I've done my bit & I always finish what I've started with regard to the house decorating.
I'm very much my Mother's daughter. Rome wasn't built in a day.. but if we were building it would have only taken 1/2 a day!
:-)
:-)
The many joys of having my mind. I've been feeling really bad the past few days. Have been in a lot of pain etc.. & basically felt a bit useless. So low & behold I decided the bathroom needed to be brightened.
We already had the paint out the back so I thought why the hell not.
Got the first coat on. Part of the second while Kevin was glossing the bedroom windows & frames etc. Then my shoulder kicked in. Felt that lovely burning sensation you get when you've over stretched.
Anyway Kevin took over for me told me to rest up & is just about finished the painting now.
To be fair though I did wallpaper the hall, stairs & landing last week & glossed the stairs, banister's & newel posts. In my mind I've done my bit & I always finish what I've started with regard to the house decorating.
I'm very much my Mother's daughter. Rome wasn't built in a day.. but if we were building it would have only taken 1/2 a day!
:-)
:-)
It's all in your head.. Is it?
Ok so to continue on. I seen the specialist & was sent for an ultrasound where they discovered a "cyst" on my right ovary (from the anatomical position). At the time of the scan it was relatively small only measuring 3.5 cm x 3.5 cm. The results were discussed with a member of my specialists team & they decided to bring me back in six weeks time for a follow up scan to monitor the cyst. They blamed this on all my pain & irregular bleeding & didn't really believe me when I showed them the diary I'd been keeping for the previous 6 years or so.
Six weeks later & the pain is increasing. I'm starting to think I'm imagining all the pain as the Doctors are hinting that I couldn't be in so much pain from a simple cyst.
The scan reveals my "cyst" is now 6.8 cm x 6.5 cm. It's decided that they need to remove this cyst asap so I'm booked in for a laparoscopy & possible laparotomy. They are starting to think now that something is amiss.
I had the surgery & woke up in quite a lot of pain. My Specialist McK came to see me to apologise for the misdiagnosis. It turned out there was no cyst! When they opened me up & went in they discovered I had extremely severe Endometriosis. He actually commented that he had not come across a case this severe himself. The Endo was present all over my womb as well as behind it, stuck to my bowel & bladder. They'd had to rotate both ovaries & perform an aggressive laparotomy to attempt to burn away the tissue. This they couldn't manage as there were too many growths & already quite a lot of scar tissue due to adhesions & the endo itself. The were several large cysts in the womb itself which they managed to remove. The pictures alone were shocking to me at the time.
I was kept in as I reacted quite badly to the anaesthetic & was very ill. A member of McK's team came around to see me the following morning & dropped the bombshell on me that not only was my uterus tilted forward but that due to the extent of my disease I would never have children. I was now 18 & it was such a negative response that I didn't fully comprehend what he was actually saying to me until several months later.
What had started out as a cyst turned out to be my worst nightmare but what Mum had be trying to prepare me for all along.
My experience in finally getting diagnosed shows that you really need to push if you feel there is something wrong with your body. Who knows you better than yourself?
Six weeks later & the pain is increasing. I'm starting to think I'm imagining all the pain as the Doctors are hinting that I couldn't be in so much pain from a simple cyst.
The scan reveals my "cyst" is now 6.8 cm x 6.5 cm. It's decided that they need to remove this cyst asap so I'm booked in for a laparoscopy & possible laparotomy. They are starting to think now that something is amiss.
I had the surgery & woke up in quite a lot of pain. My Specialist McK came to see me to apologise for the misdiagnosis. It turned out there was no cyst! When they opened me up & went in they discovered I had extremely severe Endometriosis. He actually commented that he had not come across a case this severe himself. The Endo was present all over my womb as well as behind it, stuck to my bowel & bladder. They'd had to rotate both ovaries & perform an aggressive laparotomy to attempt to burn away the tissue. This they couldn't manage as there were too many growths & already quite a lot of scar tissue due to adhesions & the endo itself. The were several large cysts in the womb itself which they managed to remove. The pictures alone were shocking to me at the time.
I was kept in as I reacted quite badly to the anaesthetic & was very ill. A member of McK's team came around to see me the following morning & dropped the bombshell on me that not only was my uterus tilted forward but that due to the extent of my disease I would never have children. I was now 18 & it was such a negative response that I didn't fully comprehend what he was actually saying to me until several months later.
What had started out as a cyst turned out to be my worst nightmare but what Mum had be trying to prepare me for all along.
My experience in finally getting diagnosed shows that you really need to push if you feel there is something wrong with your body. Who knows you better than yourself?
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