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
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.
Changes in thyroid function
The reduction and cessation of natural hormone production
Candida (yeast infection) overgrowth
Changes to immunity
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).