Do I have IC? ( interstitial cystitis ) o... - Endometriosis UK

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Do I have IC? ( interstitial cystitis ) or Endo on my bladder.

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I was wondering if I had IC. So here's what has been happening to me. A few months ago when I was diagnosed with Endo. I always had to use the bathroom like 15 times a day, because every time my bladder gets full (I drink A LOT of water) I would feel this dull aching pain deep inside of me. But after I empty my bladder I would feel a little relief, but the pain is still there it's just not as intense. Now months later I don't pee as often, but when I do; I would pee and the pain is reduced. I don't wake up in the night to pee and I use the bathroom about 5-7 times a day, depending on how much I drink. I don't feel any burning or UTI sensation. When I would go to the hospital my urine test would be normal no blood or protein. The chronic pain I feel is hard to describe it's like when my bladder is full it's pushing on my uterus causing more pain. When my bladder is empty the deep pain is still there, but mild. But I don't have that urgent need to pee like everyone else. I can hold my pee in for a long time, only if I drink and have to pee because my bladder is full and pushing on my uterus. Do I have IC or Endometriosis on or around my bladder or maybe on my uterus because these organs are so close.

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Impatient profile image

It sounds more like IC from what you describe. Endo in the bladder is working on a monthly cycle like all endo, so it is active when you have a period and that is when there is a noticeable change - blood in the pee turns it pink if endo is inside the bladder and bleeding - but that wouldn't happen in between periods.

There are infections that do not cause burning or pain when you pee or afterwards, only certain bugs have that reaction - and some do not, so having pee checked regularly for infection is a good idea.

Cysts pressing on the bladder, adhesions attaching the bladder to other organs like ovaries and uterus and even bowel can cause changes to pain levels between a full and emptied out bladder.

Short term aching can be a sign of kidney or bladder infection but usually ccompanied by fever and unwellness too.

Long term could be a prolapse of the bladder, cysts pressing down on the bladder, endo stuck in the cavity between the bladder and uterus etc.

You need to speak to your GP and ask to be referred to a Urologist who deals with bladder endo, as that is a possibility. If you have already had a recent lap op to map the locations of endo growth at that tie they can check if there was anything endo wise in the cavity between the bladder and uterus. An ultrasound scan can check for cysts and sometimes spot if an ovary has got stuck to the bladder too which would indicate adhesions.

There are tablets you can try (- several kinds) to see if any of them can give you back more bladder control. It could be that you are not filling up the bldder fully before your brain gets the message that you need to go pee - this can be caused by a disruption to the muscle contractions tht normally do a good job. They are called bladder spasms and while you cannot feel the muscles actually having a spasm, they are not pulsing in the right order and it is easy for the brain to be told bladder is full when infact it is not.

Bladder spasms can come about from trauma, infection, and proding and poking during surgery for something near by.

Dont suffer with this in silence - bladder problems for all sorts of reasons are VERY common in men and in women. You'd b surprised just how many people are walking round with bladder problems and you haven't a clue about it. Do speak to your GP and get the investigations rolling. Something is causing it, and not always poss to find a solution but you won't know till you have exhausted all possibilities. Best of Luck

Thanks for the information. I thought usually with IC you'll have pain in your bladder. Also there would be some weeks I'll be pain free. Your bladder is located behind your pelvic bone right? Well when I press down above that area it hurts, even when a doctor puts their hand inside to touch my cervix it hurts. So I know it has to be something going on around that area. I've read symptoms of IC is needing to pee all the time, even after you've emptied your bladder with only a little coming out sometimes. Or it's like having a constant UTI or bladder infection. Now I've had both before and this pain doesn't feel like none of those. I don't have any pain in my bladder when I pee or pain at the end of me peeing. When I pee I don't have the sudden urge to pee again. And like you said the pain varies from day to day. Sometimes it's mild to intense. But I'll definitely ask my doctor about this situation.

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buddyhorse profile image

hi I just saw your post and I have some things the same as you. I was tested for ic but there was nothing . about 2 years later I got tested for endo and they found spots of it in different places and on my ureter . It was found 10 months ago and the doctor put me on the depo injecktchon and it worked well but the last 2 weeks its come back . so you could try the depo if your able to

in reply to buddyhorse

I'm on depo and it's not working anymore like it used too

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