What is life 😭 : Feelings the effects of... - Endometriosis UK

Endometriosis UK

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What is life 😭

Shaz0613 profile image
9 Replies

Feelings the effects of endo. Just finished my period and my belly is so sore and swollen 😨Hot water bottle works wonders though even if it is temporary relief.

If I didn't have enough to deal with already I'm now diagnosed with osteoporosis 🤷🏽‍♀️ Why just why!!

I'm so angry with life. 😩 My osteoporosis is due to endo and early menopause. Can't see light at the end of the tunnel 💡

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Shaz0613 profile image
Shaz0613
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9 Replies

I have been walking around all day today telling myself 'what is life too'!!! I'm just waiting for my period to start I literally feel like a dead soul just living at the moment so I completely get what your going through 😔😔😩

Sorry to hear about the osteoporosis diagnosis! Get your feelings out tonight but remember tomorrow is a new day and a new start. Don't be hard on yourself you don't deserve to be. Let yourself have these moments but then just pick yourself back up and take over the endo and osteo.

Just remember they cannot beat you!!!!

Sending you positive energy and hugs during these horrible moments xx

gemmah6 profile image
gemmah6

Hey, I am so sorry about your diagnosis of osteoporosis on top of everything else 😞 Sending you positive thoughts and strength and hoping that you feel a little better today. I think that often the mental effects of the disease is overlooked. Try and stay strong xxxxx

Welsh-barney-boy profile image
Welsh-barney-boy

I empathise with how you're feeling, and I realise that we all deal with things differently. I had a hysterectomy due to endo and prior to this had many days of "why me" etc. But then the real crap happened for me, and I nearly died following my bowel being perforated during the hysterectomy and I'd developed sepsis. I was in multi organ failure and needed emergency surgery to save my life. I woke up with a colostomy and with major damage to my bladder and urinary tract meaning I was incontinent.

It's made me realise that life is too short to life life focussing on the negatives. I've made a conscious decision to laugh about what's happened- if I hadn't I feared where it would take me. Endo denied me my own children, ultimately nearly killed me and I've got at least 2 major surgeries ahead of me, as well as the ongoing and daily issues I face.

People tell me I'm strong. I'm not. I just can't face the other path as it's been hell for me and my family.

It sounds like endo has had a huge impact on your life, but try it to let it be your life. I know it's easy to say, but ....

I really do wish you all the best x

Rach3187 profile image
Rach3187

I often wonder this alot.... Especially suffering with lower back pains and shooting pains too. It's not nice at all some days I can't sleep fully... due to this I just suffer

Music1 profile image
Music1

I often wonder this a lot. Not so much why me, but it's just one thing after another. Trying to manage pain which is almost daily and living without children which I always thought I would have before the age of 40 at least. I have days when I don't feel like getting up. Endo has ruined my life. Am so sorry to hear that you now have to deal with osteoporosis. After reading posts on this site from so many people, it seems Endo can do all sorts of damage inside and quite simply destroys lives. I was reading the post below from Welsh-barney-boy and I have so much respect for her. Life is so unfair.

I just try to appreciate every little thing thing that go well or makes me happy. I don't have many of these days any more to be honest. It's so hard when you're dealing with so much and your health isn't what it should be. I keep telling myself with out health, we are nothing.

Do everything you can on 'good days' if you can. I know it's so hard.

I empathize with you completely. Best wishes, xx

caroljane80 profile image
caroljane80

Hi i know how you feel pls try and do what ever you can to improve your circumstanced. I know its a massive effort but see surgeons / doctors who can help you, Go private if you have to or to another country for treatment if this is what you need. I know it sucks and ive had all the surgeries treatments etc and ive ended up with a hystorectomy i probably didnt need and the idiot who did it missed the endo . There was none on my reproductive organs apprently and had to go private and pay for someone to actually find it ( on my bladder and adhesions ) totally denied by my consultant and given run around for 7 months. Needless to say gonna try sue and i hope this last op has worked. Im hopefull about it but too soon to tell. i stuck to my guns and i was right they missed it and had so many telling me it wasnt there ! Keep going hun message me if you want hugs xxxx

Shaz0613 profile image
Shaz0613 in reply tocaroljane80

Omg 😲 I'm so sorry to hear this. How could they make such s huge mistake! Wish you good luck with everything and sue them! You have every right.

caroljane80 profile image
caroljane80 in reply toShaz0613

I know its unbelivable!! And the aggressivness as well to get me to go away sick and in unbelivable pain ! The guy wants striking off!!! I knew it was wrong as th eendo was responding to my HRT and bowel movement the adhesions im certainly going to try see where i get with it. They gave me a hystorectomy when they said there was no endo then failed to remove the endo !!! So there is a question mark over the hystorectomy validity too . Thank god i could manage to go private it was terrible . Have you looked into what might be availble to you ( i dont know what country you are in i assume UK ). Hope you can get some help there are things that help like the gonadatrophin agnists or endo removal or hystorectomy or ovary removal alot depends where your problem actually is. It seems to be still difficult getting experts to beleive it can be on other organs bowel/ bladder / appendix ive even heard of gall bladder/ liver heart and even eyes!!!! Hope you will be ok i know it can get dark but your welcome to pm me anytime. I think i have been through everything in the last 15 years with this condition! To the extent that id almost like to train to be a surgeon who can remove it !!!

Shaz0613 profile image
Shaz0613

Thank you ladies. It's just so hard. I was diagnosed last year it's been 8 months and only now I'm getting bad stomach pains. Had them all day today so been glued to my hot water bottle which helps. I'm just scared of what else is in store for me. All Iv been getting is one bad news after another.

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