Endo inside the bladder/ weakness

[njh7]

Hi,

I have endometriosis on the outer part of my bladder that couldn't be removed (it was minimal) I have seen a urologist who has advised a cystoscopy as I keep having recurrent urine/kidney infections and pain. Iv also had protein and blood in my pee. Has anyone been treated for endo inside the bladder? Is it painful?

Also I feel/ am sick after everything I eat and am feeling so weak and tired with it. Are there any gluten/ dairy free protein shakes or supplements that can be bought? (I'm allergic to both)

Thanks

[Sweetyassi]

Hi,

Sorry to hear that you're suffering.

I keep getting infections too. I've had endo inside my bladder and had it removed 2 years ago but it has returned and I'm getting infections every other week, have bleeding in my urine, burning and stabbing pains. I feel nauseous all the time I have a eating disorder where I can't eat anything solid for weeks or days due to pains in my back, bowels, bladder.

I had a bowel resection operation done in 2009 due to having endo inside my bowels, the endo did a lot of damage to my bowels have have had problems with eating solid foods. I have now been diagnosed with celiac disease so I have to avoid gluten,wheat,dairy,soya and red meat and high sugar and high fatty fried foods.

Life sucks big time at the moment as I'm still in pain when eating anything. My dietician has given me energy drinks that actually fill me up they are Glutenfree and Dairyfree called Fresubin Jucy drink I only like the black current flavour. It's supposed to help me gain weight as I'm under weight.

It's the endo that is causing recurring infections, which also causes me exhaustion and lack of sleep at night.

Have you asked your GP to be referred to a dietitian?

Sweety.

[njh7 in reply to Sweetyassi]

Thank you for your reply!! That was like reading my own story! I also have celiac disease and a dairy allergy. I keep getting kidney infections and have just come out of hospital because I was in severe pain. I have an appointment next week and will ask about the dietician again.. Iv been looking for a meal replacement shake also as I'm so weak and dizzy all the time as I just feel so sick from food. I'm also underweight, although not as bad now xx

[Sweetyassi in reply to njh7]

Your welcome, you're not alone with this problem. I thought I was the only one suffering like this, it's only when you speak to other people you find out they too have the same problems.

I'm always feeling weak, dizzy because I'm not eating properly even being on Glutenfree and Dairyfree diet I still have problems eating so I go days, weeks even a month without eating and I just stick to liquids, like homemade soups, and the energy drinks that I have been given. It's very difficult when you not only have one problem but many others too.

Most meal replacement drinks contain milk or gluten, it's very difficult to find a drink that you can have or that are not expensive to buy.

Yes please let your GP know your having difficulty eating and would like to see a dietitian to help you.

You can drink nestle strawberry milkshake it's Glutenfree and Dairyfree I drink coconut milk, or try Options hot chocolate drink Belgian butterscotch flavour you can put either water or any milk you drink.

Sweety.

[njh7]

Thank you

I will let my doctors know next week. It's just so difficult constantly being in pain and feeling so ill but it's nice to know I'm not alone x

[Sweetyassi in reply to njh7]

Your welcome, you just got to keep nagging at your GP to get things done and to make them believe you.

It is difficult on a daily basis being in constant pain day and night and being able to sleep or talk to anyone in person about it.

Never think you're on your own, there are so many of us ladies suffering with endo and trying to cope with the pains and illnesses that's come along.

I'm here if you need to chat.

Sweety.

[njh7 in reply to Sweetyassi]

Aww thank you so much I will deffo be nagging and keeping on in my appointments next week.

Do you have muscle aches and pains when your in pain? I seem to be doubled over a lot and have shoulder and neck tension from it.. There's always something isn't there x

[Sweetyassi in reply to njh7]

Yes I get a lot of muscle pains and tension in my neck I already have weakness in my neck and between my shoulder blades which makes my pains worse.

Are you able to sleep throughout the night?

Sweety.

[njh7 in reply to Sweetyassi]

Yes I do sleep through the night, I actually think I sleep too much. If im bleeding then the pains at its worst I don't sleep for a couple of nights x

[Sweetyassi in reply to njh7]

Your lucky then in a way, I don't get much sleep and sometimes I have to take sleeping tablets when I'm desperate for sleep.

Sweety.

[Geyre]

Yes

I had endo that grew through my bladder wall from inside out. I had a partial cystectomy ( small part of bladder removed) and was the best thing I ever had done. No more weeing pains caused by endo .