Internal Cystitis, UTI or something more serious ?

(50 Posts)
Dollface20 Sat 03-Oct-20 09:36:13

Hello all , I'm 33 and for 6 months I've had
Ongoing UTIs
On/off pelvic and lower back pain
Frequent urination (cant hold alot of water for long and when i go only tiny amount comes out)
Occasional Non visible traces of blood in urine on dip tests
High White blood cells in urine
Constantly on antibiotics
These symptoms stopped for a month or so as someone as I took D-mannose and probiotics recommended for womans urinary issues.
A week later pain is back and frequent urination.
These are my only symptoms. GP has said it could be internal cystisis which he told me to read up on and he would send off urine sample to lab which waiting on results for.
Earlier in year the GP hasn't referred me for anything other than kidneys scan (which I paid for privately and came back clear).
I am beside myself with terror. I don't know what else
To do.. I found bladder cancer online which I know googling isn't helpful but I feel it's a bladder test I need not kidney test.

Any advice is much appreciated , thanks

OP’s posts: |
stressedoutmess Sat 03-Oct-20 23:32:12

Bladder cancer is pretty rare in young women - I’ve been down diagnostic tests for bladder issues several times and they said bladder tumours are pretty unusual.

Apparently they’re usually related to heavy alcohol use and smoking and happen more in older men I think .

GP might refer you for a chat with urology; they can perform a cystoscopy - camera into the bladder. Seemingly they can judge whether you have interstitial cystitis that way, and check for other issues too .

I do sympathise, my bladder has caused no end of issues for years and years (urinary retention) . I’ve basically been told the NHS are clueless as to my diagnosis as bladder issues in general in younger women are pretty rare . Which means that management of symptoms is also pretty lacking ... but there are things they can do ... if it’s interstitial cystitis or something else there’s definitely options .

Ideas for meantime;

Keep up with d-mannose
Avoid caffeine, citrus, tomatoes - I find my bladder is happiest with plain water and blander fruit and veg for some reason
Avoid bubble baths and soaps
Don’t use feminine products eg femfresh
Cotton knickers and not thongs etc
Always pee after sex
Don’t try to hold on - go to pee when needed
Make sure you’re emptying fully - tilt pelvis or stand up/sit down or something after peeing to be sure there’s no more

GwendolineMarysLaces Sat 03-Oct-20 23:44:05

If you have had your wee cultured and the results have come back negative, if you can (its £200) get an appointment at Professor Malone-Lee's clinic in London. The blood and White blood cells in your pee if alongside negative urine culture suggest that you have the type of UTI that he specialises in treating (bladder wall infection). I had one for 15 years and it was hell. I now have my life back. Get it sorted ASAP if you can.

GwendolineMarysLaces Sat 03-Oct-20 23:47:44

Ps the specialist I mentioned thinks that interstitial cystitis (which incidentally was my working diagnosis for many years) is actually very rare and most women with these symptoms have a chronic bladder wall infection. He's on twitter if you want to have a read and if you google you'll find a couple of newspaper articles . He's quite eccentric but very lovely and actually very passionate about this condition being properly recognised and women receiving appropriate care.

Feelingpoorlysick Sat 03-Oct-20 23:52:05

Your symptoms are probably the result of a UTI that wasn't treated correctly/ quickly enough and has now turned in to an embedded infection. It will need long term full dose antibiotics to treat which the NHS will not do.
I've been going through exactly the same thing since June. I'm now looking in to going private as it seems to be my only option.

Dollface20 Sun 04-Oct-20 07:48:01

@stressedoutmess thanks for the advice I will try these things and I think I need to do a food diary too x
The gp hasn't referred me to urology or w scan etc so I'm wondering whether to ask to be referred ? X

OP’s posts: |
stressedoutmess Sun 04-Oct-20 09:49:59

Dollface20

*@stressedoutmess* thanks for the advice I will try these things and I think I need to do a food diary too x
The gp hasn't referred me to urology or w scan etc so I'm wondering whether to ask to be referred ? X

You can - not sure if they will be able to do and they might have guidelines that could prevent a referral but it’s definitely worth asking .

Haven’t seen Prof Malone Lee but have heard a lot - he is meant to be a bit of a miracle worker !

Sadly my issues are quite different (bladder has an enormous capacity and doesn’t contract well) so he wouldn’t be able to help me but if you can afford the fees it’s probably worth looking into seeing him . NHS wait times for urology can be horrendous - I’m ten years since symptom onset and not much closer to answers !!

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GwendolineMarysLaces Sun 04-Oct-20 12:29:55

Dollface20

*@stressedoutmess* thanks for the advice I will try these things and I think I need to do a food diary too x
The gp hasn't referred me to urology or w scan etc so I'm wondering whether to ask to be referred ? X


What you eat and drink will only irritate your bladder if it is inflamed. So cutting out some foods and e.g. alcohol (which was a big trigger for me) might improve some of your symptoms but won't address the underlying problem. As the poster above said, you prob need long-term antibiotics and the NHS hasn't yet caught up with this.

Dollface20 Wed 07-Oct-20 15:36:34

@Feelingpoorlysick what path of private are you looking into hun ? X

OP’s posts: |
Mumma02 Wed 07-Oct-20 18:38:52

I could have written this myself! I'm 32 with the exact ongoing symptoms for the last 10 months! Finally due to see a urologist next week. You have my sympathy OP.

Dollface20 Wed 07-Oct-20 19:43:02

@Mumma02 what symptoms do you have then hun ?
I went back to the docs today Cz I was on AB last few Days but the pelvic pain felt so bad like someone had been sitting my stomach all day shock GP put me on another load for 7 days ! Also swabbed me too for other things! She said if this didn't work she would hopefully refer me to urology! What do you think they will do for u ? Xx

OP’s posts: |
endofthelinefinally Wed 07-Oct-20 19:49:05

You need to see a urogynaecologist.
Read up on chronic pain syndrome.
Chronic nerve pain.
Vaginal atrophy.
Cervicitis
Urethritis.
See if any of these things ring any bells.

Dollface20 Wed 07-Oct-20 20:20:06

@endofthelinefinally thanks
I really want to but my GP hasn't referred me maybe they are reluctant, I may have to look into this private but don't know Where to start ! X

OP’s posts: |
PineappleUpsideDownCake Wed 07-Oct-20 20:24:18

Dont know if its relevant but I was getting repeat utis when I had sex. I ended up on a prophylactic dose of an antibiotic everytime I had sex which was fab.

endofthelinefinally Wed 07-Oct-20 20:33:37

I had to go private, but it was worth every penny.
You can google urogynaecologist in your area. They are a rare breed. But a million times better than your average urologist.

Dollface20 Wed 07-Oct-20 21:44:57

@endofthelinefinally thanks and did you have similar symptoms to me ? And what did they do in the end x

OP’s posts: |
Mumma02 Wed 07-Oct-20 21:49:49

@Dollface20 I had my second baby in October last year but can only recall my symptoms starting from around Christmas time so I am unsure if the two are related. While I was pregnant I had traces of bloor and leucocytes in my urine but had no symptoms of infection so they put it down to me being pregnant. However since Christmas I have had the CONSTANT urge to urinate even though I didn't need to go. When I went I'd pass hardly anything and get no relief. I was meant to see a urologist in March but it got cancelled thanks to covid and my symptoms have got worse since then. I've since developed some right sided groin/leg pain and back pain that comes and goes on my right side. I'm finding the amount of time I can hold my urine is becoming less and less to the point where I feel like I am going to wet myself sometimes and I even leak a little urine now too. All samples have come back clear for infection but my gp perscribed my first lot of antibiotics yesterday "just incase." Like you I am TERRIFED at the thought of bladder cancer...that's all that comes up! I had an ultrasound last month and nothing showed on that but I'm meant to have a cystoscopy next week now because I've had visible blood too. Just want a diagnosis now...so fed up!

MigGril Wed 07-Oct-20 22:06:10

Mumma so glad you mentioned you've had an ultra sound as I was suffering from similar symptoms to yours a could of years ago. The pain kept on getting more intense, turned out to be an ovarian cyste and nothing to do with my bladder as apparently it can present like cystitis. I'd already had 2 rounds of antibiotics and a sample sent off before they sent me for a scan. I think the only reason why they did so soon was as I had a history of cysts on one overy already. It presented just like cystitis, which I've had before, but did start getting more painful.

RhubarbRocks Wed 07-Oct-20 22:09:56

I was diagnosed with interstitial cystitis a couple of years ago. It is horrendous and affected my life hugely for months (it still does to an extent but I can now work, exercise, socialise again).

In terms of diagnosis, after repeated negative urine tests from GP, a cystoscopy picked up mast cells in my bladder and then a hospital test finally picked up a fastidious bacteria (not picked up by GP tests).

I was on antibiotics for 5 months which cleared the infection but was left with damage to my bladder wall.

What has worked for me is:
- first of all an exclusion diet and following the rules on introducing foods slowly to test them (you can google Interstitial cystitis exclusion diet and I have a really great app that RAG rates all food and drinks),

- secondly diclofenac as soon as I feel a flare starting, and then

- thirdly (and crucially for me) bladder installations (iAluril - you can google it too) which sort of provide an artificial lining to the bladder wall.

Since the installations I’ve now been able to start reintroducing foods to my diet - not citrus, tomatoes, spices or caffeine yet but many other things including chocolate and red wine!

There is hope for you even if it maybe doesn’t feel like it at the moment (I was despair) but you need to get to a urogynaecologist and get some proper advice and help.

endofthelinefinally Wed 07-Oct-20 22:17:37

Well.
My coil had been in far too long because nobody would take the wretched thing out. Eventually I had to go to the local sexual health clinic. Bit awkward for a mum in her 50s.
Turns out I had BV so needed horrid ABx.
I had had a UTI that left me with a chronic inflamed bladder. Thank goodness for the locum GP who diagnosed that.
My NHS appt never materialised. There was no urogynaecologist in my area, so I found one in the next county.
She was wonderful.
She also diagnosed perimenopausal vaginal atrophy. I had chronic pain syndrome due to nerve pain.
I had to take a short course of amitriptylene for the nerve pain and vagifem for the VA.
That lady was wonderful. But expensive. Had i not gone private I would still be waiting.

Dollface20 Wed 07-Oct-20 22:57:09

I know I can't wait for months with this and not having a proper plan plus I gave healthy anxiety so waiting kills me I'm stopping googling now as everytime u google something healthwise Dr Google says I'm dying !! So it's triggering for me! I'm in bed now taken my first AB for the next 7 days hmm
What pain killers do you all use ? Currently on ibuprofen but sometimes pain so bad I have to use cocodamols 😩 xx

OP’s posts: |
Dollface20 Wed 07-Oct-20 23:05:05

@endofthelinefinally I'm happy you going answers and it worked for you ! Can I ask with tests consults and treatment hoe much roughly was it please ? I can't find a lot online about prices in my area ! I need to start saving lol xxxx

OP’s posts: |
RhubarbRocks Thu 08-Oct-20 07:55:37

You should be able to get a referral from your GP to a urogynaecologist anywhere as you have a right in the NHS to choose (although it took me seeing three different GPs to find a sympathetic one who believed IC existed! I then told them which specialist I wanted to see and am seen at an out of area hospital for it now).

In terms of painkillers I have diclofenac on prescription. In a bad flare I take that and paramol together.

Don’t despair and don’t worry too much about what google says about IC - it terrified me at the start and I thought my life was over but I promise you that help is out there.

Dollface20 Thu 08-Oct-20 19:36:39

Thanks @RhubarbRocks I will ring to request one is that all I need to do ?
My gp said she wants to see if these AB work first (finish them next week )! They are making me feel so sick tho and miserable 😖

OP’s posts: |
RhubarbRocks Thu 08-Oct-20 21:07:43

So I can only share my experience as a patient and hopefully a clinician might be able to advise more...

But I will share the following in case it is of any help.

I went to the GP after 10 days of a UTI that wouldn’t go. GP 1 at the practice prescribed antibiotics. They didn’t work so I went back and was seen by GP 2 who have me a different antibiotic (the practice just randomly allocates you to a GP who is available). Saw him a couple of times and then GP 3 and then GP 2 again. Went on a merry go round of antibiotics. After 6-8 weeks I ended up with GP 1 again who was horrified that I was still with the GP practice for this and hadn’t been referred to a specialist by her colleagues.

By this time it was Christmas so she prescribed me some heavyweight painkillers which just about got me through Christmas week and I then had a cystoscopy as soon as the hospital reopened.

So - learning 1 - they will try antibiotics first but this GP felt 6-8 weeks was bad so 6 months for you is really not ok to not be moving into the next stage (diagnostic cystoscopy).

That was under general anaesthetic - not nice but worth it to be told they had found elevated mast cells and get a diagnosis of IC.

Get that and you will move to the first line treatment - exclusion diet. Sounds awful and a bit like ‘what no medication?!’ but within a week I was so much better and could leave the house and sleep. For a month I excluded all red and amber foods (ICN food list app is really helpful). I am a bit of a foodie and love my wine but you can still have steak and chips and cheese and lots of veg so it really isn’t that hard given the benefits. Ice cream is even a soothing food (any excuse!).

After a month I started reintroducing certain food and drink one by one . That was about 20 months ago. To be honest I am still on an exclusion diet but have managed to find two types of red wine I can tolerate and chocolate and plenty more. I am also practically blue from eating blueberries (green food)!

Then it was a few months after the cystoscopy that suddenly a special urine test (long duration culture) found an infection (fastidious bacteria). I’m not sure what the test is called but you could ask if the test you are having would pick up fastidious bacteria. No GP test will.

I cannot tell you how happy I was when I got the letter telling me I had an infection! I thought it would be the answer!

Five months of antibiotics and I felt much better. But unfortunately it left long term damage. Hence the bladder installations (next step after exclusion diet). IAluril is new to the UK I think but it is amazing. It basically coats your bladder wall so that it is protected in the way an undamaged bladder is.

I was so scared to try in case it made things worse but it was the best decision ever. I’ve now been trained to self administer and it means I can do it all at home (NHS even gives you a snazzy wash bag with the catheters which is a nice consolation for the months of pain!) (NB don’t panic the catheter is just to put the meds in so is only for a minute once a month).

I am still on an exclusion diet but am introducing more food (since last week I can eat onion again!) and we are getting very good at picking merlot and Pinot noir to suit any meal.

Sorry that is so long. You may want to ignore a lot of it. I just know that when I was at the start I googled and thought that I would be trapped in hell forever. I know my story isn’t everyone’s story but I also know that there are treatments. Sadly a lot of GPs don’t know about or understand IC/Bladder pain syndrome and how it can be treated.

One final point. I have always felt I get two types of flare. An ‘inside’ one (from food/drink irritating my bladder lining); and an ‘outside’ one (from tight clothes, high impact exercise, vibrations (buses awful!)). I have mentioned the treatment above for the inside flares. The outside flares are real too and I have been treated by a physio (also on NHS). Basically the pelvis and bladder have a threat response and cramp up as a result. The physio recommended Jilly Bond to me although I’ve not looked at her yet. But learning to relax your pelvis if you also have ‘outside’ flares may also help.

Right I am writing a book! And as I said at the start this is my personal story and may not resonate or fit with others but I just want you to know you aren’t alone in this and there is hope.

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