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Posts: 14
Reply with quote  #1 
I was diagnosed with IC (through exclusion of other issues) by my GP last year. However, I’ve had symptoms on and off for 16 years. It started at 18 when I was at University. I had recurrent UTI symptoms and was put on antibiotics, but cultures were always negative for infection. Doctors couldn’t figure it out and I never got a urology referral. My symptoms were burning in the urethra, intense urgency and frequency that left me miserable. Fortunately the symptoms were passing and I would just medicate myself with sodium citrate to cool the burn, heat pads and ibuprofen. Because I already had suspicions about IC even back then, I modified my diet somewhat but managed to include all things back. The symptoms recurred very infrequently through my 20s. They’d pop up for a day or so once in a blue moon. Then I had nothing until about 3 years ago, when the symptoms returned full force and I had a 7 month long flare. The GPs were totally useless and just left me to get on with it. I had a regular cystoscopy as the GP seemingly didn’t know I would need a hydrodistention for it to be diagnostically useful. Nor did I at the time so I went through a useless invasive procedure. The procedure showed no abnormalities. I was flaring at the time. The symptoms then went away again but started popping up more frequently. I changed GPs and my new GP immediately diagnosed IC based on the symptoms.

My flares are coming on more frequently though and driving me absolutely mad. I cannot seem to get a handle on what’s causing them. I’ve modified my diet (following the IC diet) and apart from spicy food, I can’t pinpoint a food trigger. When not flaring, I can seemingly eat and drink most obvious triggers with no issues. I’m just careful not to push my luck and avoid mixing triggers. But I’m so confused on what to do with diet. When I flare, am I meant to go back to a the most restrictive form of the diet? Or can I eat what is usually safe for me? I’ve been on the restricted diet this for months and it doesn’t seem to be stopping the flares. I also was flaring for a day or so but it was on the way out two weeks ago and ate a pizza to see what would happen (as I have suspicions that food isn’t much of an issue) and the next day the flare was gone. I was fine thereafter until a few days ago when I’d been on the diet religiously. In fact the last 3 flares, the only food I’ve eaten each time was chestnut mushrooms. Are these an issue? I’m just tearing my hair out at this point as nothing seems obvious. If it takes days to flare from a food, how am I ever going to figure this out? I have been keeping a diary. It doesn’t seem to help.

I have suspicions that seasonal allergies might play a major part as I seem to flare February to September. I’m taking 150mg of ranitidine twice a day (which stopped the 7 month flare dead in its tracks after a week, but seems to not be doing much now), cetirizine hydrochloride, a nasal spray. Though I keep getting occasional rashes still and am still partially symptomatic for hay fever (sneezing/runny nose). I’m also taking sodium citrate and ibuprofen.

My period also also seems to have an impact. And I’m sure emotional stress isn’t helping. I’ve recently finished a PhD, looking for a full time job an living with in-laws. They are messy. I am a neat freak. It’s not conducive to relaxation, and have had therapy and CBT. I am trying relaxation techniques and waiting for more talking therapy.

I was also on antibiotics on and off for years due to acne and know sometimes yeast overgrowth can cause issues but I’m not sure how much legitimacy to invest in this. I also don’t know if i have PFD. I have very tight lower back muscles and often notice I’m tensing ‘down there’. I’m trying to consciously relax those.

I’m sorry for the long rant but I just want to get well and can’t seem to get a handle on this. I don’t know if diet is as important for me but I am restricting my diet and it’s irritating the heck out of me that I might be doing it for no reason. I don’t understand why the ranitidine would have worked for nearly a year and then stop. I don’t know if it’s seasonal allergies playing out in an odd way. And I can’t stop my period (I can’t take hormone based birth control due to migraine/other hormonal sensitivity) or change my living situation at the moment. My new GP even seems to have lost interest. Like I should just be happy with a diagnosis. My husband is lovely but just doesn’t know what I’m going through. I just need some support and some help on how I can plan a logical way through this to get to the root of these triggers and also what to do logically when in flare.

What do I do now?

All advice so welcome.
Huge thanks.

Posts: 8
Reply with quote  #2 
Hello im sorry i dont have any answers but like you and struggling with constant bladder thobbing and burning when i wee
I understand the feeling like you want to pull your hair out and trying to make anybody understand how debilitating this is.
Doctors are no help leaves you no where to turn
I myself have had invasive test which always come back normal which leaves me with no support.
I take the meds the Doctor gives me but with no follow up or treatment plan in place.
Have reached out to pelvic floor therapist but only had one appointment.
Just wanted you to know you are not alone
Im struggling to get thou each day at the moment
We have to keep banging on doors with this thou x

Posts: 14
Reply with quote  #3 
Hi Teddy
I know, it’s just maddening at times. And yes, for me it’s that feeling that there’s just no plan in place. I feel like the doctor is just like, ok you have your diagnosis what more do you want? Well I’d like some sort of plan to get back to a more normal life where I’m not at the mercy of my bladder playing up whenever it randomly feels like it. I feel so restricted. I seem to make progress for some months and then all back to square one for months on end. It makes me very angry and I feel like we’re in the medieval period rather than the modern which should have better educated doctors and an actual treatment plan.

What meds are you taking?
Thanks for taking the time to reply.

Posts: 8
Reply with quote  #4 
I know exactly how i feel i cant even get a diagnosis im been trapped at home last few days because constant discomfort its back to Doctors again to try and get referred again which takes mths.
They never talk to me bout meds or a change at moment i take 20mg amitriptyline at night was on oxibutynin but changed today to betmiga to see if any help.
Doctor has given me some Diazepam to help relax muscles but dont want to rely on these sort of drugs
Just finished another course of nito antibiotics but done nothing still burning and thobbing bladder
Someone said to me about Azo but not sure if ok to take on regular basis. Urine shows as clear
What is your current treatments?

Posts: 14
Reply with quote  #5 
Hi Teddy

It’s horrible to feel trapped and stuck at home. What are your symptoms?

Currently using 150mg of ranitidine and then just over the counter antihistamines on top. Though the ranitidine worked at first for about 8 months, it stopped working around February.y flares have been off and on since then.

I’m going to start on hydroxyzine instead. My theory is it’s worse with the allergy season/stress. The hydroxyzine is an antihistamine but also used to treat anxiety, so I’m hoping they might help. I’m resistant to trying a lot of meds as I just think of this is a condition I have to live with for life, I’d like to try and keep things as much in check with life style as the primary treatment with meds backing up where needed.

Posts: 1,164
Reply with quote  #6 

Oh god you poor thing and suffering for so long.

A few points standing out about this.  If it walks like a duck talks like a duck it probably is a duck. UTIs throughout your teenage years going into your 20s and negative tests is very common (the tests simply don't work).  It is now known that bacteria can become established into the cells of the bladder wall evading detection from testing and becoming immune to antibiotic treatment especially if the antibiotic treatment isn't of sufficient dosage.  With the symptoms lessening in your 20s it is so clear that the infection was embedded and you were learning to live with your symptoms.  

To try to understand this, have a read of this explanation as to how a Chronic UTI develops:

So what to do.  Firstly you need to see a specialist who can manage these chronic symptoms. Given your long history of infections, its likely the infection has affected the nerves in your bladder and the inflammation and frequency needs to be bought under control along with the infection.  Also your pelvic floor will be in spasm from the years of infection and pain, these will impact on the nerves and cause yet more irritation and sensation of needing to urinate.  

You don't mention any other pelvic issues or hormonal problems but a specialist can at least check to make sure there isn't a polyp, cyst or growth pressing on the bladder.  

You are doing all the right things in controlling triggers so diet, comfort etc.  What you cannot control obviously is flare ups where bacteria emerge from the bladder wall and cause acute UTI symptoms.  

In terms of the allergy situation and your worsening bladder symptoms, studies have shown significant mast cell numbers in bladder tissue are commonly found in patients with Interstitial Cystitis or Painful Bladder Syndrome (IC/BPS). They have also shown that histamine released by mast cells plays a key role in nerve sensitization that is responsible for the bladder and urinary pain associated with IC/BPS as part of the immune system’s inflammatory response. It acts as a chemical messenger that carries signals from one nerve to another.

With an increase in histamine, contractions can occur because of the relaxation effect of histamine on the detrusor muscle, resulting in needing to urinate often.

Mast cells are also seen in the histology of bladder biopsies taken from patients with chronic cystitis. So there is an expectation that high concentrations of mast cells should be present when someone is struggling with chronic bacterial cystitis. These mast cells will infiltrate the infected cells breaking up the bonds that hold them in place and thus the infected cells are shed into the urine. 

Histamine is found in fermented and cultured foods because histamine is a by-product of fermentation. Foods that contain high amounts of histamine include:

  • Fermented foods, like sauerkraut
  • Aged meats
  • Cheese, yogurt, cottage cheese, and kefir
  • Vinegar
  • Alcohol
  • Fish
  • Aubergine
  • Tomatoes
  • Spinach
  • Strawberries
  • Mushrooms

Your gut bacteria also naturally produces histamine. Whilst foods can be removed from the diet that are high in histamine, it’s important to note that the problem isn’t the histamine—it’s the inability to break it down leading to an excess of stored histamine in the body.

Some people find that a low-histamine diet also helps their bladder pain and inflammation. A low histamine diet could be observed to see if it helps with symptoms. If so, stick with it but be warned, it is very restrictive. There are also conflicting opinions as to preferred dietary paths so be prepared to be confused.

The foods listed above are the starting point for a histamine diet. More information can be found in this detailed list of histamine food produced by SIGHI.

Histamine and oestrogen

Histamine intolerance is more common in women, and is often worse at ovulation and just before menstruation. This is because during ovulation oestrogen is high compared to progesterone and increases again just before menstruation. Put simply, oestrogen increases histamine release.

Oestrogen stimulates mast cells to produce more histamine and oestrogen down-regulates DAO the enzyme that helps to clear histamine from the body. At the same time, histamine stimulates the ovaries to make more oestrogen. The result is a vicious cycle of oestrogen, histamine release, oestrogen release, histamine release. 

For many women, symptoms of ‘oestrogen dominance’ such as PMS, endometriosis, period pain, and heavy periods improve by taking steps to reduce histamine. These include taking natural progesterone which down-regulates histamine and ensuring that oestrogen pathways in the body can detoxify to prevent oestrogen dominance.

With regards to the hormonal situation there appears to be no set pattern to hormone symptoms in those with bladder problems. Some people experience an increase in swelling, pressure, pain, and frequency when oestrogen levels are highest. This is believed to happen because oestrogen increases mast cell secretion, therefore increasing inflammatory reactions. Others however feel better when their oestrogen levels are high.

Researchers believe that bladder pain sufferers may benefit from the increase in the thickness of the bladder lining and the lack of progesterone during this time.

To add to the complicated picture, another group feel best and experience less symptoms during their period, when hormone levels are low. Finally others experience bladder pain during their periods.

Where sufferers can agree is that almost all complain of increased ‘flare’ symptoms a few days prior to the onset of their period. The lower oestrogen levels and higher progesterone levels make people more susceptible to bladder symptoms around this time.

I would also suggest looking at your method of birth control.  

Birth control pills disrupt the body’s normal hormone production with synthetic versions of estrogen and progesterone (called progestin) which suppresses ovulation, tricking the body into thinking it is pregnant all month.

Unfortunately, many women first start taking the pill as teenagers and don’t realize that as they get older that their health could be impacted by these hormonal imbalances over time.

Issues include:

Changes in thyroid function

The reduction and cessation of natural hormone production
Candida (yeast infection) overgrowth

Changes to immunity

Low oestrogen
The use of diaphragms or caps has reported an increase in UTIs due to the effect of these on the vaginal flora.

There are also issues with IUD usage due to bacteria infecting the IUD itself leading to recurrent infections. Oral contraception or IUD contraception, can turn the vaginal PH alkaline which can increase bacterial anaerobes, candida/thrush or bacterial vaginosis.

The Mirena coil, a progesterone only form of birth control which is often prescribed for endometriosis or heavy periods can cause similar problems due to bacterial growth on the device and also the reduction of oestrogen that can lead to urogenital atrophy and changes in vaginal PH allowing an increase in vaginal and bladder infections.

Fungal spores on an IUD can also cause candida upsurges. If candida is an ongoing issue, consider removing the IUD and switching to another form of contraception. 

The Depo Provera injection and Nexplanon hormonal implant are also designed to lower oestrogen production and may cause issues similar to those outlined above for IUD devices. This can happen due to increasing changes in vaginal ph and the reduction of the mild antimicrobial protection that sufficient oestrogen levels offer in the vaginal and urinary tracts.

All the stress you have been through won't have helped your bladder. When danger or a stressful event is perceived, the body’s emergency system automatically changes the body’s balance by producing the ‘stress response’ – or the ‘fight or flight response’. This change of balance or emergency readiness is brought about by hormones, or chemical messengers, that are secreted into the bloodstream. The stress response causes the body to secrete stress hormones (adrenaline, cortisol, norepinephrine, and others) into the bloodstream where they travel to targeted spots in the body to bring about specific physiological, psychological, and emotional changes that enhance the body’s ability to deal with the threat—to either fight with or flee from it.

But the body is unable to determine the difference between physical, emotional or mental stress in its response. Because stress hormones travel to many target locations in the body, the stress response causes many physical, psychological, and emotional changes including an increasing need to urinate.  Many report their bladders flare due to stress. 

BHUK can help with lots of info, give them a call on Tuesday.  Their advice line is fab and they understand this and speak to people of all ages.  You are not alone with this.  You have options and they can help with making a plan and offering support and specialist suggestions.  This has gone on far too long now and you need to be properly managed. It may take time and it may be bumpy but as long as you explore your options and seek the right treatment as well as doing all you can to help yourself (and roping in family and friends to help support you - that's key).


Posts: 14
Reply with quote  #7 
Hi Susan

First of all wow, thank you for such a substantial and serious response. I’m so grateful to you!

In terms of infections, I’ve actually never tested positive for any UTIs, even way back when all this started very suddenly at 19. From the first instance, my cultures always came back negative. However my bladder has been ‘sensitive’ my whole life. Do you think there could still be a bacterial element?

I also have IBS which came on about 4 years ago very severely and had a ton of testing for at least a year (because the IBS was so severe they thought I had ulcerative colitis as my bowel was so severely inflamed) then with scans etc, so don’t think there’s anything pressing on the bladder that way.

With hormonal birth control, I don’t use any! I can’t use the combined pill as I suffer with migraine with aura. I have been advised by a gynaecologist not to take progesterone only options as I am likely very sensitive to my own progesterone. I suffer with awful PMS (always have) and heavy and painful periods. I also suffer with (mild) intermittent acne (since 17 - hence the on/off antibiotics for the acne since then) and progesterone would likely make that worse. I refuse to use an IUD, hormonal or not, as my mother developed serious issues from one when she was younger. So no hormonal birth control for me! Though the doctors always try and push it on me. My bladder symptoms do worsen mid month and at the onset of my period. That’s a definite connection.

I will certainly call BHUK on Tuesday. It is a relief to be heard and not just ignored and told to get on with things.

Susan so you know on any NHS based experts for referral? It seems like all the progress is being made in the US. I just want a doctor who will take this seriously and work with me on a plan, so I at least feel hope that I won’t be at the mercy of this.

Also my symptoms fortunately do not often involve pain as such. This is only very infrequent and occurs on emptying my bladder sometimes first thing. When it happens it is excruciatingly painful and feels like tiny little knives in the bladder. It lasts a few minutes and dies away. But this barely happens. My main symptoms are maddening urge and frequency. When in flare the urge never ever dissipates. I need the loo as much after I go as before. I also get burning in the urethra and my whole bladder just feels off/sensitive. I can’t really put it in words. When I’m not flaring, it feels ‘normal’. Urge passes with urination and I don’t have abnormal frequency. I can actually hold it well! Though recently I’ve noticed over holding it can bring on a flare.

Just so confused and trying to put my finger on the trigger/triggers so I can get my life back.

Posts: 8
Reply with quote  #8 
Im with you on trying to help with lifestyle and diet
Im not a big foodie i only drink water hot normally
Or organic Oatmilk foods are plain and simple not much appetite tho no caffeine for quite few yrs
Not tryed antihistamine dont suffer and allergies
So not sure would help me.
My symptoms have changed after quite a period of being reasonably ok urogyno
Signed me back to Doctor and of course everything gone mad
Started to get what felt like cramps radiating from pubic bone but started to get worst and burning when i urinated plus bladder pressure feeling like i needed to go all the time
Took sample to doctor when they finally got back to me showed white blood cells in blood so indicating
Infection took 2 lots nitro anitibotics but still suffering with painful burning and pressure sometimes stabbing pain radiating around to my bum.
New samples showing clear
Have had appointment with pelvis floor therapist to see if theres a problem there need talk more with her to see if there's any problem
What are your daily symptoms?

Posts: 14
Reply with quote  #9 
Hi Teddy

As far as I am aware antihistamines are a really standard part of IC treatment because of how they think the IC works. Quoting Susan above:

“studies have shown significant mast cell numbers in bladder tissue are commonly found in patients with Interstitial Cystitis or Painful Bladder Syndrome (IC/BPS). They have also shown that histamine released by mast cells plays a key role in nerve sensitization that is responsible for the bladder and urinary pain associated with IC/BPS as part of the immune system’s inflammatory response. It acts as a chemical messenger that carries signals from one nerve to another.

With an increase in histamine, contractions can occur because of the relaxation effect of histamine on the detrusor muscle, resulting in needing to urinate often.”

They might be worth a go maybe? They did help me get relief for some time at least.

For me, my symptoms range from non-existent when not flaring, to horrendous urgency and frequency, and deep burning discomfort in the urethra and a feeling like my bladder is just off/sensitive. It’s the urge that gets me. I find it so hard to sleep with it or enjoy anything.

Posts: 8
Reply with quote  #10 
Hi Michelle
I totally agree with the urge feeling thats the worst thing that wears me down i just lose interest in anything feels like my bladder has life of its own
Mine is worst when i walk around i go thou alot if hot water bottles
Re the antihistamine do you get them over the counter ? Or on prescription?

Posts: 14
Reply with quote  #11 
Hi Teddy

I can so relate to the ‘wearing you down’ comment. That’s exactly it. It’s relentless.

I’m taking ranitidine at the moment. You can get it OTC but you should definitely speak to your GP about suitability for you. I take 150mg. Mine is prescription though. It’s sold as an acid reducing medication, but it works on blocking histamine receptors in the bladder. I’m moving off it onto hydroxyzine hydrochloride though as the ranitidine stopped working for me (though it did certainly help for about 8 months). The hydroxyzine is a more standard (and slightly more heavy duty) IC antihistamine. I also take cetirizine hydrochloride (just the cheap hay fever stuff).

I take sodium citrate sachets for the bad burning as they act by reducing the acidity of the urine. They help for sure but are very high sodium obviously, so not a long term solution. I also take ibuprofen to help with any inflammation if things are acute. And otherwise heat like you say and really plain foods. I miss coffee so so much!

Posts: 8
Reply with quote  #12 
Like you would be good to find a specalist who would listen and work with us to find some sort
Of relief thats where i feel very let down feel like its not taken seriously.
All this has taken its toll on me lost a lot of weight
Family member are ok but dont really understand
How badly it can effect your day to day life.
There have been periods over last couple of yrs where I've been ok but im always mindful of my bladder.
Just cant understand what has happened for it to flare up again, The powers that be just say my bladder looks heathly its like banging your head on a brick wall trying to convince them somethings wrong
And if you get a referral its a waiting game.
Work is becoming a problem also.
Like you im going to contact BHUk to see if they can point me in the right direction with specialist,meds,support.

Posts: 2
Reply with quote  #13 
Hi there,
Susan is right with all her info on this multifaceted disease. I have had it for almost four years now and it took two and a half years to diagnose the chronic uti. The problem I see for many women is that the embedded infections that occur due to misdiagnoses by the standard tests are extremely
Difficult to treat. I have been on high doses of antibiotics for 14 months now and it is the only thing that has reduced my flares significantly. If you read the biology around the process of the chronic uti you will see how the bacteria are released into bladder every now and again when they reach the surface of the bladder wall. Look up biofilms... they are the nightmare defence army for the bacteria! The bacteria happily hide inside the biofilms making it hard for antibiotics to get through. I am now taking biofilm disruptor, which you can buy online, it helps to make the antibiotics more effective. I have tried everything, believe me and I don’t like taking the drugs but it makes scientific sense. My next move is to see a more functional doctor who works immunotherapy as the deep routes of this are about our immune systems not being able to clear the infection, which is very complicated and needs many different approaches to help it function better.
I have stuck to a low histamine diet for three years and taken out grains and dairy as they are both inflammatory. Diet definitely helps with symptoms! I also take DAOSIN , which is an enzyme that breaks down histamine, before I eat something that may be high in histamine and it makes a big difference.
Try Prelief, before eating anything acidic, that helps too. I’ll let you know how I progress on the healing journey. Don’t give up ladies, they tell us it’s not curable but I’m not ready to believe that yet and if I have to moderate my diet forever to live pain free then I’m happy to do it. Xx

Posts: 7
Reply with quote  #14 
Hi Michelle,

I have sent you a private message replying to your question as i'm not sure if I can mention the specialists name who I see. 

Firstly the NHS urine tests are not fit for purpose.  I have had this condition for years.  I was put through all the tests cystoscopy, Urodynamics, bladder stretch and bladder instills.  I modified my diet, nothing worked at all!  As I didn't tested positive for a UTI I was never prescribed antibiotics, even though I told various Urologists that it felt like an infection. Surprise, surprise they didn't listen - it was always a box ticking exercise for them.  I will try not to let my bitterness for Urologists spill over.... anyway i'm now currently 3 months into my antibiotic treatment alongside Hiprex and i'm doing very well It was an infection all along!  The first time I saw the specialist that I see now, I mentioned that I often had like flakes in my Urine. She told me they are epithelial cells - that's your immune systems trying to get rid of the infection! I wish I had booked in to see her years ago, she has changed my life. xx

Ps IC is very rare! I would imagine lots of people who think they have IC actually have an embedded infection.

Posts: 14
Reply with quote  #15 

Thank you so so much for taking the time to reply and for your PM, which I have seen. Will be making an appointment with Dr A ASAP.

Can I ask if you ever had pain as a symptom? Or what your symptoms were generally?

Also the flakes in the urine are ringing major alarm bells for me. I always have floating white flakes in the urine. I asked the GP about this a year or so back and they had no real answer and said it was probably just normal sediment from the bladder. I’ve had these symptoms on and off (mainly off) for 16 years, but it’s only the last 3 they have been bad and getting worse. They appeared at 18 for a year, then died down through my 20s (incidentally I was on various tetracycline antibiotics throughout my 20s for acne) so wonder if this was keeping it at bay.

Do you mind me asking what bacteria they found for you?

Huge thanks
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