Just need to vent!: Hi, Im sorry but just... - Endometriosis UK

Endometriosis UK

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Just need to vent!

Kb3rry profile image
4 Replies

Hi,

Im sorry but just need to vent some feelings about the lack of understanding some people have about endo. I'm sure this is not entirely their fault but it none the less makes it very difficult for people that suffer from it when they make misinformed comments.

I was diagnosed with Endo four years ago after a laparoscopy. It had previously been diagnosed as an inflamed colon! And have several cysts which were treated. I am somewhat fortunate that one of my bosses suffered from endo & underwent a hysterectomy, so someone at work had an understanding of what i was going through.

I have recently been off work due to chronic pain and extreme fatigue, luckily I have an appointment with my consultant on the 25th. I had been on a course of Prostap which was good for me however for the last four months the endo paind has come back with a vengeance.

I have had to hear comments (second hand & direct) describing endo as a sore tummy. I know there are different stages of endo and people experience different levels of pain. One person I know claims to have endo and has recently made a comment (comparing her symptoms to mine) saying that she manages the pain better.

This dissapoints me, not because I look for any sympathy for suffering this.Far from it. The disease annoys me that it takes the control away from me and I struggle with that. I feel that there really needs to be more done to get info out there about endo and pages like this are fantastic, although if you dont know what it is you wont look for these pages or info.

My endo pain is with me pretty much all the time at varying levels of pain. Smetimes manaeable, sometimes unbereable. And from researching this since I was diagnosed I know I am not alone. But outwith the support from all you, it is an incredibly lonely disease. And we are quite often judged when they dont understand.

Rant over, thanks for listening :o) xx

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Kb3rry
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4 Replies
Kb3rry profile image
Kb3rry

I have just realised how terrible my spelling is through that rant. Sorry girls, have run out of energy and patience.Xx

figgy profile image
figgy

Dont worry it is good to rant every once in a while and we understand what it is like. I get frustrated when non endo people compared their period pain with mine and i got the feeling they thought i was a total fraud. And the times i went to work so drugged up with pain killers i was in total oblivion but battled on and yet one snivel and you dont see them at work for dust. I am in the past tense as i have now had a hysterectomy and am much more in control of my pain at the moment. You are right unless more is know about this disease things wont change.

Keep smiling x

loulo profile image
loulo

i agree its good to rant....people need to be more aware of how horrible and painfull this disease is. its not just the pain but the other things that go with it infertly, upset stomach, migraines. figgy i agree with drugged up feeling at work. i do delivering some days and gone in saying i cant drive today a) because the pain stops me in my tracks and b) hungover from painkillers. doesnt help that my female boss has a 3 day period and no pain just sales through. due for a hysterectomy very soon on waiting list. hopefully this my end my pain. ((((hugs)))

Kb3rry profile image
Kb3rry

Thanks for your replies to my rant :o)

It's good when people can relate to what you are going through, although I really wish you werent going through it! Sometimes I feel as if I'm losing my mind. I am a determined, stubborn person that is trying so hard not to let this disease ruin my life. But sometimes I lose the battle. I hope you all keep well and stay strong. Good luck with your Hysterectomy loulou. ThanksXx

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