Cystoscopy today, scared 😔: So the dreaded... - Endometriosis UK

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Cystoscopy today, scared 😔

avelvetcrowbar profile image
6 Replies

So the dreaded day of the cystoscopy is here. I have it a little later today at 3.30. I know it's a simple and normal procedures to have which is done under local anaesthetic but as I've been having such pain and aching and soreness in my bladder, along with stabbing pains and burning in my urethra I'm absolutely petrified that it's still going to be so uncomfortable and might make my symptoms so much worse. Especially afterwards.

I'm so scared about the outcome. For the past 6 months or so, not only had my endometriosis flared up with a vengeance but my polycystic ovaries have been causing me havoc too. And then my bladder has just been another level painful. I have to go 30 times a day, can only Empty a small amount of urine which burns and stings and my bladder aches along with sharp stabbing pains. After months of anti biotics and constantly finding blood and such in my tests I've been at a bit of a loss. I've got some bladder and kidney scans in the next few weeks too, assuming the cystoscopy might not help or discover anything. thats the scariest of all that they'll tell me there's nothing wrong and I'll feel even more insane :(.

Also it was mentioned the problems could be endo of the bladder related. I know this says it's uncommon but I can't understand what else it could really be. Has anyone has this?

I'm petrified and have been googling and youtubing myself into oblivion. Any advice would be brilliant.

I'll keep everyone updated with how I go on. Ultimately I just hope I get some answers as I can't live like this anymore.

Jordan

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Tboag profile image
Tboag

No need to google any more, today's the day for some answers, hopefully rule a few things out, if nothing is found,

I've had a cystoscopy and it was over in seconds, I had 03 nurses in with me for dome reasons and we were all talking about fire men calendars, lol

Let us no later how you get on, good luck and keep positive.

avelvetcrowbar profile image
avelvetcrowbar in reply to Tboag

Haha! That doesn't sound too traumatic at all! Hopefully mine will be that relaxed! I'll be posting later with how I got on! thankyou for the support 💛

Sweetyassi profile image
Sweetyassi

Hi,

Good luck with your cystoscopy today, you will be fine.

I had a bad experience but everyone is different and can handle pains and tests differently.

I Had cystoscopy done last year June. Like you I had terrible pains that I couldn't handle, thought I was going mad. I hated going to the toilet everyday every 20mins sometimes, I had burning, stabbing pains. As I was with the doctor and nurses having the cystoscopy done and talking with the nurses I was in a lot of pain I thought I was going to swear at the doc to hurry up I'm in agony. What I saw on the monitor were bleeding lumps inside my bladder, I cried with relief that they found something. A couple of weeks later I had the lumps burned off. I found out I had bad cystitis which was causing me pains and bleeding. After my op I had a week of being pain free was happy thought I could move on with my life, sadly only after a week I was back to square one this time the pains were even more unbearable the bleeding was worse couldn't sleep or eat couldn't go out I was house bound.

I was so fed up with my life, the docs said I should be pain free and that they burned all the lumps off there was nothing they could do. My hubby took me to see a private doctor who performed a scan and found Endo sitting on top and wedged inside my bladder I had to have another operation which I did last year November the surgeon said my insides were a mess, everything was stuck together, I had loads of Endo on my bladder, both ovaries, urethra I had loads of adhiesions on my bowels. I Was very surprised that the NHS doctors missed how bad my insides were. I'm Still recovering from my op and feeling much better than I have been in the last 5 years, I have the odd pain but that's due to the healing. I'm So happy that I went to see a private doctor if I hadn't I would still be in a lot of pain.

Good luck, let me know how it went today. If you need to talk I'm here for you.

Sweety

avelvetcrowbar profile image
avelvetcrowbar in reply to Sweetyassi

Thanks so much sweety for your reply. It means a lot. I'm so sorry to hear you had such an awful time :(!it's so scary how much they can miss because it's not thorough enough! That's what worries me.

I wish I had the money to go private, I really do. But as I'm a student and live my mum who's on low income I couldn't possibly afford it.

I'm just hoping I get some answers and eventually some relief. Let's keep our fingers crossed. Glad to hear that eventually you managed to find some relief. It's just such a shame it took so long to get to that point.

Thanks again for the reply. I'll post again a little later afterwards to let everyone know how it went!

Lots of love!

Jordan.

X

Sweetyassi profile image
Sweetyassi in reply to avelvetcrowbar

Hi, I couldn't afford to go private either, the only I could was to sell my gold and other things that I will miss to have this operation. But I'm glad that I did because it's made a huge difference with my health.

Good luck for this afternoon, hope everything goes okay for you.

Sweety

moxyfilms profile image
moxyfilms

I have a friend who had horrible bladder problems and tons of work done there, and she started taking this stuff which I have also taken for cystitis and it's actually amazing.

waterfall-d-mannose.com/dma...

I use the power stuff you put into a little warm water, and you can take as much as you need, and my god it helps with the burning and urgency. At least for me, and for my friend who was going through exactly what you are going through. She keeps tubs of the stuff all over the place, in her car even, so if she gets flare ups she knows it's near by and she gets it in her asap.

Good luck today, hang in there, much hugs xx

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