Cystitis Cystica??: Hi does anyone have an... - Endometriosis UK

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Cystitis Cystica??

Hi does anyone have an experience with the condition Cystitis Cystica? I’m an Endo sufferer and had a bladder op in October due to constant UTIs and symptoms of UTIs when I didn’t even have one. Bladder pain/spasms and traces of blood in my wee even when no infection. Several cysts were found so my surgeon carried out a biopsy and diathermy. Jus had my follow up the other day and fortunately nothing cancerous going on and no Endo inside the bladder but I’ve been diagnosed with Cystitis Cystica! There’s no cure like Endo 🙄. I’m being kept on my bladder meds (vesicare 5mg) as this controls the spasms and I’m getting started on bladder instillations in Jan to see if that helps. Just hoping to find others similar who I can chat too.x

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Hello, I haven’t been diagnosed with Cystitis Cystica but I suffer really bad with urine infections. Once I had between 25 and 30 infections and then many times where it felt like I had one but when they tested my urine it was clear. I can sympathise on some level!😢x

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Thanks for your reply, sorry to hear you suffer so badly too with infections. I was getting at least one a month and then In and around that the symptoms but no infection 🙄. I had a very nasty one after my bladder op in October but been ok since. However today my bladder really hurts and doesn’t feel quite right when I’m weeing. I’ve tested my wee and it’s clear at the minute so I may just be having a flare of the inflammation/cysts that I now know I have. It’s bad enough suffering with the Endo isn’t it, let alone this on top. Have you had a cystoscopy?xx

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Hi thanks for your reply. It’s not Cystitis I have but a condition called Cystitis Cystica. Unfortunately there’s no cure and I get flares where cysts grow in and on my bladder. Luckily I now have weekly bladder instillations and these have been amazing in controlling my symptoms 😊

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Can I ask how you know this? Only I’m under a urology team and they’ve said there’s no cure. Also I’ve not come across many people who actually know about this condition so I’m keen to hear your thoughts. My treatments are keeping my symptoms at bay most of the time but various situations can trigger a flare of the cysts and I’ll get a lot of bladder pain and feel like I have an infection but I haven’t. My urine dip tests nearly always show blood and leukocytes.

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Thanks I’ll take a look. The urologist said even though this is an inflammatory condition anti inflammatorys won’t help the cysts. I’m actually on naproxen daily anyway for my Endo Pain so who knows that could be helping the bladder too!

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Hi Refrequent,

Please be cautious about recommending herbal medicines and I would always advise that one speaks to a professional.

As the NHS website states:

Herbal medicines are those with active ingredients made from plant parts, such as leaves, roots or flowers. But being "natural" doesn't necessarily mean they're safe for you to take.

Just like conventional medicines, herbal medicines will have an effect on the body, and can be potentially harmful if not used correctly.

They should therefore be used with the same care and respect as conventional medicines.

If you're consulting your doctor or pharmacist about health matters, or are about to undergo surgery, always tell them about any herbal medicines you're taking.

nhs.uk/conditions/herbal-me...

With best wishes,

RicEndoUK

Volunteer Moderator

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Thank you 😊

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Hi there, well I am in my forties and have suddenly developed bladder symptoms. I have had one or two infections but generally there is no bacteria there even when it feels like there is. I also have urgency and frequency and pain on urination and before and afterwards. I am up half the night with it but have found that co-codomal helps me get some sleep and CBD oil has calmed it all down after a month or so on a lowish dose, it definitely has reduced the pain. I have seen urology who did a CT scan but didn't find anything. I am waiting to see Gynae now as my GP suspects endo on the bladder as |I have bad periods too and my mum had terrible endo resulting in several ops. You have my upmost sympathy it is a horrible feeling xx

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utmost lol not upmost but you know what I mean xx

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Thanks for your reply. Sorry to hear you suffer with bladder issues too. Be interesting to see if you do have Endo on the bladder. I had very severe stage 4 Endo when I was diagnosed, it was everywhere. I’m just waiting on another lap with my Endo Specialist now.

They never found anything wrong with my bladder on scans either it was only by going in with a camera that they found a large lesion and inflammation, so a month later I went in under GA for them to biopsy the lesion and by then I had 5 cysts in there too! Apparently the cysts will flare up and down as to when my bladder is inflamed.

Your symptoms do sound a little like interstitial cystitis too but it could just be down to Endo on your bladder. I hope they get to the bottom of it for you.

That’s interesting what you say about CBD oil. I have some, maybe I should give it a go.xx

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Hiya, thanks for the reply. I did wonder about IC too but with that diet makes a big difference and it doesn't seem to matter what I cut out and for how long. I have had a mirena coil fitted to cut down the bleeding on my period and that has worked but made no difference to the bladder symptoms. I also get bowel symptoms on my period too. I have been told if it is not endo it is back to Urology for bladder instills to see if that helps.

I would give the oil a go if you are in pain, it is the thing that has helped with that the most. I started on a low dose of organic oil (from Amazon) (but they are out of stock of that particular one which is 5%) and have noticed a huge difference after a few weeks. I have ordered a 10% one this time to see if that makes any difference.

I am sorry you have lesions and cysts it must be very painful. I hope you have a lovely New Year anyway and keep updating the site as all info is useful to others in the same boat. Keep on trucking as they say! x

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I’m starting bladder instillations in a couple weeks, will let you know how I get on. Also having the coil fitted soon. That’s if it fits! I have a bicornuate uterus so they need to assess the inside of my womb first. I think my pelvic pain is all down to my Endo and scar tissue/nerve damage from previous op’s. The bladder pain flares up and down especially flares when I have an infection. Will def try the oil though.

I also have several lesions in my liver 🙈 have had ultrasounds and a CT but now they want an MRI to get more images as not 100% sure what they are. I don’t have much luck. Lol.

I will keep posting updates. Feel free to keep me updated with your progress too.xx

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Hi Cat247, are you in the UK. I’m hoping to get Intillations in the NHS but my hospital doesn’t offer them but others do. Do you know the best time to take versicare? I just started it after 10 months of UTI symptoms and Ureaplasma and a tethered bladder. 👎 Hope your feeling better 😄

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Hi I’m in Plymouth Devon and will be having instillations there. I didn’t know you couldn’t have it at every hospital. My Aunty lives about an hour and half away and she travels that to have instillations at my local hospital. Where are you based?

I take my vesicare at bedtime, I find it gives a bit of a dry mouth so I didn’t want to take it in the morning incase it made the dry mouth worse in the day. It def helps the bladder spasms I was getting. Best of luck.

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Hiya, I’m in London. I’ve seen a private doc for my bladder problems a few times, he suggested instillations but privately it’s stupidly expensive. I have an appointment with NHS Urologly soon and hope they’ll refer me to a hospital that does do them. I’ll continue to take Vesicare at night.

Please let me know how you get on with Instillations 💫

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I will def let you know how it goes. First one is on the 15th.

Fingers crossed you can get them on the NHS too. Keep me posted.x

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Did you have the instillations yet? 💫

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Hi yes I had my first one on Tuesday. Went absolutely fine and bladder has behaved since. As I know how to self catheterise I may even be able to do the instillations myself from home soon.

Got to phone the nurse today though and see what to do as can’t make my next treatment on Tuesday as been given a date for my gynae op with my Endo surgeon! Eek!!x

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