Interstitial Cystitis - Rigid Cystoscopy

[Claire_Alexandra]

I have a rigid cystoscopy tomorrow under general anaesthetic to investigate possible interstitial cystitis alongside my endometriosis (including bladder endo).

has anyone had this op? Any advice for packing for hospital and recovery?

[Carrodise]

hi Claire_Alexandra I had this same procedure october of last year in Australia after two years of problems /pain/misdiagnosis and confusion that the pain was caused by endo and adenomyosis.

I had the procedure under general as a day procedure with biopsies and X-ray- they discovered signs of infection and associated scarring (No endo or cancer) so I also had a urethral dilation.

My main challenge after the operation was the bladder/urethral spams and then getting rid of the infection, with the right antibiotics for the bacteria and an anti-spasmodic tablet but the latter was only prescribed when I went back to ER in agony! I would suggest asking about the antibiotics and anti spasmodic. You might need something to reduce any anesthetiser constipation effects as that can increase pain and pressure.

I’m now menopausal so this problem with utis is not uncommon apparently, but I think I picked up the infection in previous medical procedures (im also having oestrogen cream to try and improve the ph etc balance , and have gone onto the bladder diet which basically eradicates acidic things). Hope this helps, 🙏 and best of luck!

[Hooplove00 in reply to Carrodise]

How long did you suffer from spasms? I’m 2 months post op now (bladder endo, interstitial cystitis) and my bladder has been spasming like crazy for the last almost week! Was in the ER a few days ago 😣

[Carrodise in reply to Hooplove00]

very sorry to hear that, its incredibly painful.

i ended up in er also where I was prescribed a medication called solifenacin succinate (solicare) which helps a lot, better than any pain medication, I am taking mostly daily since the procedure last october. i believe you can take this medication safely forever, has some side effects like constipation and dry mouth but I dont think I would cope without it.

am doing a few other things in parallel too-

-also went onto the bladder diet ie cut out acidic foods, alcohol etc,

- trying an electrical nerve stimulation treatment, which ks an acupuncture needle connected to a TENS machine, its called PTNS, delivered through my new gynae-urologist (im in Australia where its partially covered under medicare, like you NHS)

-plus taking the new UTI vaccine Uromune thats available (in australia and i believe UK) as ongoing infection is for me a problem.

- and as im menopausal, have topical low dose oestrogen which seems essential to help with the symptoms i have, particularly cloudy urine, the topical treatment is better for those with endo and the pain from the bladder problems seems worse than any risk.

hope some of this helps 🙏

[Hooplove00 in reply to Carrodise]

Very painful. This is super helpful, thank you so much! I’m in the states, so will have to see what my insurance covers. I will mention all of the treatments at my appointment in a few days! So glad you responded.I’ve been on the bladder diet as well which helps a lot, just not entirely. My urine samples always come back with flags, but providers say it’s because the sample was contaminated.Kinda a mind game for myself since IC can feel like an UTI and I’m always wondering if they’re just overlooking things? I haven’t been put on antibiotics since lap, which also makes me question their interpretations as well. Thanks again!!🤗

[Carrodise in reply to Hooplove00]

i have had contaminated samples as well- it can also be a sign of an embedded bladder infection not going away so its under the testing threshold. embedded infections are hard to get rid of and i think this is my problem too, especially as spasming bladders make it harder to flush out the infection, can leave scar tissue etc.

a good way to get a surface-uncontaminated sample is to have a shower or similar such as using saline on the outer skin etc and then do the urine test , when i did this a test came back with two bacteria, one wasnt treatable with the antibiotic i was on. when i switched to a trimethoprim antibiotic it was game-changer for the pain by 24 hours .

finding a gynae- urologist who is embracing all new treatments made a difference too.

good doctors including GPs will now give antibiotics even with a questionable test results as the uti tests are so unreliable.

you may be able to ask a good doctor to trial for a different antibiotic to see if it makes a difference and go on it for longer- some doctors use low dose antibiotics for months to get rid of infections .

i dont think the uti vaccine is available in the US yet but there may be trials you could join.

best with it all, I feel your pain and frustrations - it took me some years to get to where i am now, trusting ny instincts and embracing new knowledge about utis - and endo and menopuase. hope this helps 🙏🙏

[Hooplove00 in reply to Carrodise]

my goodness, I had no idea about any of these that! I’m going to ask for another test, tomorrow as my urine is now smelling funky. Will bring up embedded infections as well! It’s just crazy to me that they haven’t even put me on antibiotics once. I had even asked if it was an option to see if it would help with the bladder pain and symptoms. Asked my GP to go over the tests to double check, and they say it looks ‘fine’😳

Really hoping this OBGYN is one of the good ones! It will be my first visit with her tomorrow, so I’m quite anxious. Plan to put together a list of my symptoms, questions, ect. Will have to ask about the vaccine.All that you have shared helps so much and it’s a relief to know there’s others going through this. Just getting to this point has been such a battle, but much more to come! Thank you again 🙏🏾🙏🏾

[Carrodise in reply to Hooplove00]

best of luck, my suggestion would be to find a urologist or ideally a gynae-urologist, with interest in womens urinary problems and perimenopause as these problems become more common then.

the IC (cystitis) can cause symptoms without infection but there is one new view that IC may be caused by the embedded infection which happens when a biofilm grows around the bacteria making it harder to eradicate. my gynae-urologist also said the uti test thresholds in australia are too high. i ended up weeing pure blood in ER at one point!!! so now I have prescriptions on hand so it doesnt get to that extreme, especially as they work, but i did need one confirmation of the bacteria and infection last year.

theres other treatments urologists know about too. best if luck with your dr

[Hooplove00 in reply to Carrodise]

That is something I will definitely look into, as this is so debilitating! When I mentioned a referral to a urologist my GP said it was a bit too soon after lap?Is that common? As much as I intend to mention all this to my GP& OBGYN, I hope that they will be able to help since it’s more of a specialty concern.Has this effected your ability to work at all? I can’t seem to do much for more than an hour or two, then I start to hurt and spasm. I haven’t gotten back to working or classes, yet. That would be terrifying to pass blood and I’m so sorry you had to experience that! I consistently smell blood in my urine but am trying to figure out if it’s the IC, my cyst, or because I’m on the pill. Ideally that’s what I would prefer too! Having medications on deck to avoid the extremes and trips to the ER. I’ve found that some providers are sympathetic, whereas others treat you like you’re wasting their time. Thank you, am super nervous.

Xx

[Carrodise in reply to Hooplove00]

sorry to hear about the pain you are in, re: the bladder endo and your IC if they were originally diagnosed by a urologist could you call/ go back to them, ask for some further treatments for the spasms? and a trial of a new antibiotic in case of infection? is the endo inside the bladder? sounds very painful.

I would think usually a urologist would usually work in collaboration with a gynae for women with endo on the bladder.

a gynaecologist-urologist with both qualifications and an interest in endo might be perfect for you as you have overlapping diagnoses . I think there are more in australia now so guessing this is worldwide.

working is hard, im part time and can do a lot of work from home which helps. 🙏

i feel for you with the symotoms, maybe try another uti test using the shower method ie cleaning the area to reduce the skin contamination , and see if they can isolate a bacteria. i dont have bladder endo (that was found anyway!) so for me ongoing infection thats hard to get rid of, menopause and scar tissue seems the culprit. i wouldn't be coping with the pain without the solifenacin and getting on top of the infection. x

[Hooplove00 in reply to Carrodise]

I had gotten diagnosed by the endo specialist who did my surgery. I believe she had a team of specialists to interpret her findings/worked a long with her. I basically had my surgery and was then taken off the books. Been complaining about my pelvic pain for some time now, but no one was taken me seriously because ‘I had the surgery and shouldn’t be having pain’. Lots of endo was found and removed from my bladder😅

Luckily the OBGYN referred me to urology, which is a step in the right direction! However, non of my providers feel comfortable treating me for my IC. I understand but it’s also the most annoying pain and sensation! Hoping that I can find somewhere that will allow me part-time or half days to at least start off. Went to visit a friend yesterday and by hour two I was hunched over😣 They didn’t take a urine sample either, but am going to ask my GP at my appointment next week. Going to bring up solifenacin to my GP as well, as maybe she’ll at least prescribe until I see the urologist. Bladder has been spasming for over a week now! Read that this could be considered a flare??

As always, thank you so much for your responses Xx

[Carrodise]

sounds like a nightmare pain scenario for you, so sorry, yes all the nerves get sensitised too and there will be scar tissue.

could also be pevic floor spasms in tandem from the endo so if they haven't referred you to a pelvic floor specialist for endometrious thats definitely worthwhile pursuing. 🙏🙏

[Hooplove00 in reply to Carrodise]

thank you! I had actually asked my GP to refer me a few times already and she said it was too soon, and didn’t want to exasperate anything 😣🙏🏾

[Carrodise in reply to Hooplove00]

oh, you might be able to go without a referral if you find someone familiar with endo etc, this is the case in Australia but our medical system might be different- the physio would be a good person to judge the techniques you could use and when to help the healing process- it took me a while trying a couple of pelvic floor physios to find a great person for me, she has a masters in womens health and a couple of visits with her was all that was needed -

another option is trying a different GP, who understands endo /urology remedies and pain being unnecessary, searching the web for local endo discussion forums and seeing if you can find a recommendation 🌻

if it helps, its taken me a long time, years to find the right doctors but my new gynae-urologist from Sweden is great, recommended by a different gp i saw by chance when my usual GP away.

trusting my body, doing my own research, trying to find economical options as this can be crazy expensive, and persistence,- its exhausting but should improve your health team eventually best of luck ❤️

[Hooplove00 in reply to Carrodise]

I love that you mentioned the pain being unnecessary! Sounds like I have a bit of homework to do💖It’s very exhausting and no one tells you that even after surgeries, we are still having complications/have to switch providers! Unfortunately, we have to have referral for almost everything here🙁 looked into switching GP’s but they are 3 months booked out, and I’m hesitant to not have a GP for that long especially so soon after surgery. Hoping urology calls me soon, as they reach out to you after the referral. Thank you and hope you are well🙂♥️