Post Cystoscopy 😢😢😢😢😢😢

[avelvetcrowbar]

So I had the absolute nightmare that was a cystoscopy.

Firstly, it's been hands down one of the most painful experiences of my life. After telling them beforehand how much pain I was in and how much my urethra hurt I thought maybe that would be taken into account. I had to shout out with pain and instantly burst into tears. It felt as though someone had several thousand mini shards of glass and was repeatedly forcing it up my urethra.

How is this supposed to be painless?

Apparently my bladder seemed okay and was fobbed and rushed off with a prescription for some tablets to stop me peeing 1000 x a day.

I'm heartbroken. I absolutely sobbed whilst getting dressed and leaving the hospital. I could barely even stand up straight. The pain was excruciating, mind numbing.

I pride myself on having a high pain threshold after breaking multiple bones at a time, having had polycystic ovaries and endometriosis for years and not once have any of those come even close.

Finally I got home after drinking water as suggested, I needed to wee. It was so painful I couldn't walk properly, I could barely see straight But trying to wee after that has been the worst moment on my life. I can't even put into words how much it hurts me. I genuinely cannot.

How can thsee awful symptoms be nothing? And why did this so called painless procedure hurt so much? I'm so crushed in a way that nothing showed. I feel crazy, like a super crazy mental bitch who no one believes and who gets repeatedly fobbed off.

The urologist also had the audacity to imply my pain could be due to pelvic pain syndrome- no offence Mr but I've suffered with all kinds of pelvic pain over the past 15 years and I'm 99.9% certain that it doesn't make your bladder throb with pain, and make your urethra and weeing feel like you've been set ablaze.

I couldn't even post last night afterwards as I was so depressed and couldn't stop myself from sobbing and hyperventilating.

Something is wrong with me. Something is really wrong with me. It's ruling my life. I feel like I'd rather just go to sleep and never wake up ever again than face a single day of this anymore.

So ive been given Solifenacin, and also my gp has been told to put me back on amitriptyline to "help"

I've got my scans in a week or so's time on the 12th - which I'm sure wI'll reveal nothing and send me even further into depression and also a gynecologists appointment on the 7th to beg and cry and get on my knees if I have to- for a laparoscopy and to please help me.

I'm usually a strong and tough person in regard's to this, because I have to be. Bit I really just can't take it anymore. I don't understand any of it or how easily the doctors just usher you away with no answers and no help.

Why won't someone help me?

I'm taking painkillers, on and off crying in bed with a hot water bottle between my legs. Maybe I should just accept that this is my life from now on and no one will help me.

💔💔💔

[angelyn]

Oh hun I'm so so sorry! That sounds like an awful experience.

I can only sympathise with you on the strange pain that they don't seem bothered about. They still don't know why I'm having kidney pain.I feel exactly the same way. At least I've had a lap tho..but they said the "2 small spots" of endo doesn't correlate to the pain I'm having. Thing is you could still have endo on outside of your bladder or within/outside ureters and kidneys.

Like you I've had broken bones that were nothing compared to this. I has a lumbar puncture as a child(needle in spine).I'm now on morphine and many other pills and I still have pain.

Have you considered going to the pals department? I work for nhs and if pals gets involved they jump to attention.also they still have no diagnosis for you so technically your 18 week clock is ticking. I would ask pals how many weeks left you have on your 18 week clock as well. They get fined by the government if they don't meet those targets.if they tell you they have stopped it then you ask them why because you haven't had a diagnosis and only specific pain management departments are allowed to stop it by saying that your pain relief is your treatment. They are not allowed to stop your clock without having a diagnosis first. (Like they did with mine!)

what pain relief have they prescribed? It sounds like you could do with something stronger.

I know this sounds bad...but perhaps you could film the agony you are in when taking a wee and show it to them. I think they think patients exaggerate but you clearly are in a ridiculous amount of pain. Or perhaps take someone with you who is fed up of seeing you in pain maybe they can give an objective view of your pain...or shout at the Damned doctors.

I know you are feeling so down right now..you go ahead and have a cry because you fucking deserve one..Please don't give up hun, if you can't fight them anymore then take someone with who can fight for you. We shouldnt have to fight this hard to be treated.You deserve adequate medical treatment. The least they could do is prescribe stronger painkillers while they um and Ahh about what to do.

I'm sending you a massive endo sister hug.

xxxx

[avelvetcrowbar in reply to angelyn]

Thanks so much for the reply angelyn. ♡

They haven't prescribed me any painkillers what so ever..nothing despite me literally being in tears and saying how much pain I'm in.

Not even my own doctor has either when I went saying how much pain I was in. When I went in just before Christmas with an awful endo flare up where I was bleeding and passing clots continuously, they kept me in but then sent me out telling me to just take my contraceptive pill as normal and take paracetamol.

Paracetamol?! I might as well just eat a tube of smarties for all the good it does.

I'm just going to have to beg and cry at my gyne appointment. if they give me another laparoscopy this will be my 3rd. But I just know something is not right. It was bad before but I'd never had any of the urinary issues or such so something must be going on.

I don't think anyone around me gets it at all-hence why I turned to this site. My family are very much a 'man up and get on with it' both my sisters live away and my mum is a very strong minded Scottish woman who thinks it's weak to cry or show pain.

I don't think my boyfriend who loves with me really gets the extent of the pain either although yesterday when trying to wee after getting back I was just absolutely howling in pain shouting for help and he just didn't know what to do and looked as though he was about to burst into tears.

I'm just amazed as always at the lack of help the hospital provides.

I haven't been prescribed anything for my endo or my ovaries, no pain killers, no drugs or anything at all to try to help. I just got sent away.

It's completely ruling my life. I'm a fine art student who can't even get the energy to paint and it's affecting all of my studies and I just don't know what to do at all. Even if I called up pals I just don't think it would do anything because he prescribed me tablets to stop me weeing and said he'd see me in 3 months

I just don't know anymore.

I'm so unhappy and depressed. Recently losing my 14 year old lab has just made everything worse as I don't have that companion to be here

Sorry for the big rant.

[angelyn in reply to avelvetcrowbar]

Fucking hell I can't believe they've just left you with paracetamol! No wonder you feel so down!

My GP is the one who has been prescribing my pain relief.

[angelyn in reply to angelyn]

Oops pressed button before I was finished..rest of reply incoming

[angelyn in reply to angelyn]

I would absolutely kick off about the amount of pain you are in. Take that film to pals now and tell them you will go to the papers with it if they seriously consider that they've treated you appropriately.

They need to prescribe you something right now. I can't say they will give you something straight away that will work as you have to go through the "pain ladder".

So far I've tried mefemenic acid codeine,nefopam, naproxin,amytryptaline, tramadol short release,tramadol long release, morphine short release, morphine long release. At the moment I'm on a combination of 4 of those, and I'm still in pain,but they certainly do help.

If your bf can speak up for you I would take him with you now that he's realised the pain you are in. I think my family also underestimated my pain levels since like you've probably been doing- I just carry on..my stepmum works in a service that provides care/medication for people with cancer etc. I love her to bits but she kept telling me how much more pain those people are in. It only hit them recently when I was so sick from the meds I was shaking like a leaf and sick from the car journey.

I know we shouldn't have to resort to filming and stuff. I can remember telling a woman on here to take a picture of the blood in her stool cos no one was listening to her.

I know you said you are a student but could you possibly afford a private appointment? My first gynae told me to get a mirena at walk in centre and come back in 6 months. She said my pain wasn't cyclical enough to be endo and most of people who have endo don't describe burning pain like I do.

I can't tell you how defeated I felt after that appointment. I didn't know how I was supposed to get through another week never mind 6 months. I managed to get a private app and that doc took me a lot more seriously. He found bladder endo in the lap. Private apps usually between £100-300.i would take someone with you and a coloured in calender of your pain - this seemed to have the most impact on that doc. My bf was gonna pay for it because he knew how much pain I was in and couldn't cope.

Absolutely rant away here! Not many people understand. I think its cos it's not a visible illness and it's to do with women's stuff. Honestly medical professionals seem so blasé and uninformed about endo on/in the urinary tract. I see a few replies here from my other kidney pain ladies. I find it very telling that we have all had to push so much just to be believed by medical professionals. Perhaps the endo charity could start an awareness campaign for gps and consultants about urinary tract endo. Why doesn't my consultant know about it?why should I the fucking patient be teaching them that endo pain might not be cyclical and present as burning pain? Why should I have to fucking tell them that kidney pain is a sign of endo inside urinary tract. Did they never see that medical paper in their years training?perhaps gynae training needs to seriously be looked at. Why does it take me being on morphine for them to finally fucking believe me about the severity of the pain?

Anyway hun...sorry bout that but I get so angry about how some of us have been treated.

All I can do is try to offer suggestions..but I'm no expert..and possibly send virtual hugs.you know you have my heartfelt sympathy for you.

I will keep posting updates on my journey so that women like us can at least talk to someone else facing the mystery pain..and hopefully when they finally pull their fingers out their buts and find out what the fuck all this kidney and bladder pain is from will post on this site so that it might help someone not have to go through what you are going through now.

Serious hugs

Xxxx

[avelvetcrowbar in reply to angelyn]

You're reply was brilliant. Honestly. Made me laugh in parts just because it's so true and it sounds how I usually am when I'm in better spirits.

Thankyou for all the advice. I'm literally going to dedicate a whole diary to my pain and mark down every day so that I can literally be like THIS IS MY PAIN DIARY.

To top it all off my body thought it would be a fabulous time to start my period so I know feel like my ovaries are about to explode out of my body.

I'm wondering if I'm just not forceful enough. I'm quite meek and quiet really most of the time in front of doctors but I just want to just go mental and throw everything around the room.

It's just awful that we also have the responsibility to try to explain our own conditions to the medical experts. Sometimes I feel I know more about it from experience, speaking to other sufferers and the Internet than them themselves.

At the end of the day- endo to an extent and pcos are something I can deal with but the urinary problems I physically can't. They totally stop all normality. I can't sit in a 2 hour lecture to go and cry on the toilet every 10 minutes. People think I'm strange enough as it is without this on top!

I'm glad atleast you were able to go privately, I wish I had enough money to pay for every single suffererer to go private. All I know is something is truly wrong and I have to get it sorted or some help or relief.

I've got some codeine off my grandad (what a sad state of affairs) so I'm going to try that as I'm popping paracetamol left right and centre and was advised not to take ibuprofen because my kidneys are a little bit of a mardarse Which in turn makes everything worse. I've started having really awful pain in my abdomen since yesterday and I am literally the shape of a small planet. Even my flexible waist band trousers (which I went to get specifiably yesterday for the dreaded period) are being pushed to their limits.

I've gone totally off point. We really really have to try to get some more awareness and knowledge for GP's. The whole thing is ridiculous.

I'm going to ring my doctors tomorrow and demand some stronger pain killers or else I'm going to the hospital or harassing the 111 number because I just can't cope.

Thanks again so much for your advise and support. I will literally take everything on board.

Thankyou so much. I don't know what I'd do if I hadn't found this site.

Xxxxx

[angelyn in reply to avelvetcrowbar]

Yes pain diary absolutely helped. I coloured my different types of pain in different colours.and then used a number to mark the intensity of that specific pain for the day.so doc could see I have pain daily..but close to periods kidney pain ramps up and after period hot coal bladder is worse.

Don't worry I completely understand nicking codeine of your grandad. My gran gave me some of hers when I ran out lol.. I found that tramadol helped with the bladder,so I could actually think of something else other than imagining a hot coal in my pelvis. We are still looking for something that can touch the kidney pain.

I may be telling you stuff you already know but anyway: double check that the codeine he's given you definitely doesn't have paracetamol in it as they often combine the two and you defo don't wanna be taking double paracetamol. Also codeine can mess with your stomach do never take it on an empty stomach. (Can eventually give you ulcers). And also it can make you constipated so get some all bran ASAP! There is also a stool softener (omg so glamorous! )gp recommended called lactulose which I would get just incase.

One more thing..I was so happy they finally gave me painkillers that I was hesitant to tell them if I was still experiencing pain. Don't do what I did. If they give you something - try it for a week or two. If you still have ANY pain then go back to gp and say "I still have pain",so they can tweak your meds.

Yes I'm also meek and quiet. I don't think on the spot and have trouble with confrontation. My advice is to take someone with you who can be belligerent on your behalf if necessary. I once took my pregnant friend (and fellow endo sister) with. She had her imaginary war paint on and was fully prepared not to leave the surgery if I didn't get stronger painkillers and a sicknote. My bf mum is similar type of person. So if you know one of them strong ladies who are able to speak their mind take them with you. I hardly ever go to an appointment alone now.

I'm glad I made you laugh. Apparently my accent sounds posh..cos everyone pronounces all their vowels softy in the country I'm from even though I'm common as muck. (Ever had cockroaches infest your radio?lol don't even ask).anyway it cracks up all the ladies at work when I swear as well glad to have cheered you up somewhat!

Xxx

[avelvetcrowbar in reply to angelyn]

Where abouts are you from? Haha! Cockroaches in the radio?! What! Haha. I've just posted another post with a beautifully flattering photo of my giant stomach which is currently the size of a small planet and wouldn't supreme me if it had its own gravitational pull. I'm definitely doing a diary of pain- haha. Hopefully atleast that will get the to see the frequency of it if nothing else.

And I might take my older sister with my to appointment if I can although she works almost constantly.

I physically can't wee as it's hurting so much Im literally howling. The codeine is small tablets which says codeine phosphate is it? So I think it's just pure codeine. Not that it's made a single bit of difference whatsoever. I've just tried to speak to my boyfriend and show him the swelling only for him just make excuses about not wanting to go to a and e and saying I should wait 48 hours or some rubbish. Fucking men. I'm trying to sit in the bath to eventually wee (disgusting I know) not that this makes a difference either.

Just feel atrocious.

Do you have Facebook or instagram?

I'm on Facebook as Jordan-Melissa Corrigan and on instagram as avelvetcrowbar

Hope you're feeling okay!

Lots of love!

Xxx

[angelyn in reply to avelvetcrowbar]

I was born in South Africa but now live in UK in same town as British half of my family.yes some crummy block of flats really have roach problems!

Yes codeine phosphate was what I had and I think that it had no paracetamol in it. To be honest with you the codeine didn't really help me either..or at least they helped the first day but become ineffectual after that. I think I'm like an elephant when it comes to meds- takes alot to get the desired effect.

I too have done the wee in the bath scenario!

If you are unable to urinate I think you should head down to A&E. That sounds pretty serious. If they've not ruled out kidney stones you might have one and even if they have ruled it out you might have a uti from the cystoscopy procedure.its certainly common after people have catheters so it probably occurs with cystoscope. So I think you should go to A&E NOW.

Hell maybe this is normal after a cystoscopy but they could at least give you some pain killers.

I'm not on Facebook or Instagram. .I know a 28 year old who isn't on social media! Feel free to message me on here though as the notification pops up on my phone.

I'm feeling ok or at least certainly a lot better than you at the moment!

I would watch out for blood in your urine, if you spot that head down to A&E ASAP. They still don't know why I had blood in mine but it can be sign of a kidney infection which comes from a uti..and if you have kidney problems a possible uti should be taken very seriously.

I'm sorry bout bf..but you need to get to A&E. Anyone who can sit for hours to have an arm sleeve tattoo is no wimp when it comes to pain. (Saw your pic)

Xxx

[moxyfilms]

Oh sweetie! I have absolutely nothing I can contribute to actually help you, but I am SO sorry you are suffering like this! Please, take angelyn's advice and get someone to go with you to be your advocate, if you can! Or do film your struggle. And if they still don't believe you, ask them to send this as your audition tape to Mr. Spielberg for you, if they think your acting skills are that good. You need to be heard, and believed!!!

I am absolutely devastated for you and I can't believe this is happening to you. Please hang in there and cry to us as much as you need to, and don't give up.

I am sending you all my love, and huge huge hugs. please hang in there! xxxx

[avelvetcrowbar in reply to moxyfilms]

Thankyou moxyfilms so much for your support and reply. it means the world.

I just wish there was some way to make them see it's just absurd that we even have to consider things like recording the pain were in in order to be taken seriously.

I'm trying to hang in there, god knows I am but just feel absolutely drained and like I can't do it anymore

Thanks again for all the love and support. It's really appreciated.

Xxxx 💛💛

[dollypop1994]

Hello honey,

I was just about to post a question when I read your post. I had an appointment with the urologist today & have been referred for a cystoscopy on the 8th of April, as well as an ultrasound. Now after reading your post I am absolutely terrified- it sounds like what they put you through was absolutely brutal! (As it was, they had to put me under general anaesthetic for a colonoscopy so I have no idea how I am going to go through with a cystoscopy) I have been on Solifenacin for almost five months now & it's done absolutely nothing for me. I have stage 4 endo & one of the concerns is that it is spreading to my kidneys, urethra & inside my bladder.

It really does sound as if you have had a horrible time of it hun. As for the scans- endo can only be diagnosed with a laparoscopy & it is shocking that you haven't had one. You should not be being left like this- fobbing off seems to be the only "expertise" that alot of these so-called specialists have! If the pain continues to be this bad then you must go to A&E- you deserve to be treated properly & I really hope that you get some answers xx

[avelvetcrowbar in reply to dollypop1994]

Thanks for your reply lovely.

Ive had 2 laparoscopys so far (I forgot to mention it in my post) and in march last year had one to remove it (endometriosis) from my ovaries and from the back of my womb-hence why I thought my urinary issues were related to endo coming back. I also have polycystic ovaries too-

I'd try not to worry too much about the cystoscopy. It's not supposed to hurt and it doesn't hurt most people - I think because there is something clearly wrong with my insides and my urethra that they're missing- that's that is why I had so much pain-most people I've spoken to have had virtually painless experiences with hardly any discomfort. There is also the option to go under general anaesthetic during this procedure if you'd really really prefer but they're reluctant to do it usually as it's typically a very quick and straight forward thing.

God knows what's going with me and my body. It seems as though no one wants to- or can help me.

Thanks so much for the advice and support and hopefully you will get all the support and answers and help that you need!

Xxxx

[dollypop1994 in reply to avelvetcrowbar]

It's ok sweet. I honestly almost cried when I read your post- it really did sound horrific I've got pcos, too, as well as adhesions & adenmyosis on top of this bloody endo, as well as a whole list of other problems, & its horrible. I get a really sore urethra just from peeing, however my gp (absolutely lovely doctor & one of the few who really does listen & help) gave me some clotrimazole cream. It is usually used for thrush but I find it really does help- & I think you can also get it over the counter. He also told me that using a baby wipe rather than normal loo roll may help- & it does

I just can't beleive the way you were just palmed off with solifenacin & amitryptaline. Awful. These people are supposed to help us. To be honest if they offered me the option to have a general anaesthetic for my cystoscopy, I would take it. I'm so sensitive to pain, & I was told with the colonoscopy that they would have preferred me to have had the anaesthetic anyway because they knew it would hurt me too much.

Really do hope you get some answers hun & that one day you will get the help you need- soon! If you need to chat just feel free to message me xxx

[mablesky]

Hello there I'm sorry that after all of that you had no diagnosis.

I have got to say that I think what you went through is absolutely outrageous and barbaric it must have been beyond painful for you god what we have to endure is awful I really hope you are not too traumatised by it lovely

[gcc81gcc]

hello...I did Cystoscopy 6 days back..I have to go with the pain as you explained...however,my kidney still hurt...I am drinking water, but still it is really painful...when I am expecting the kidney pain to go away after Cystoscopy?

[avelvetcrowbar in reply to gcc81gcc]

Hi! This post was a few years ago when I had my first cystoscopy. I recently had another 4 weeks ago today. It took me at least 2 weeks before my bladder started to feel better and the pain started to ease. Make sure to take hot baths, drink lots of water if you can to flush fluids through your waterworks and take regular painkillers. If you are worried you might have a urinary tract infection or you're experiencing a lot of pain I'd make an appointment with your doctor asap as they will be able to dip your urine and also give you pal killers or antibiotics if needed. It's such a horrible pain I know, but it will ease. I'd say at least another week before you'll start to feel a lot better. But I did have my bladder stretched and my urethra stretched so you might feel better a lot sooner. Sending lots of love and hoping that it eases for you. X Jordan

[gcc81gcc in reply to avelvetcrowbar]

Thanks for the reply and making me feel better...I am taking antiboitic...