Pain
Pain is why you're here. I know in just how much pain you can find yourself in when you have interstitial cystitis.
But before we dive into the subject of pain management, let me assure you of two things. First, you will get better. Two, the pain will get better.
How i became a pain management ninja
My pain, my rat
When I first got struck down with infection, I had a rat in the house. It would scratch its way out of the cables at the back of the tv, and gnaw at furniture, placemats and apples. It took me a while to discover it was a rat. The regular time-keeping and focus with which it colonised my kitchen made me convinced it was a female. She was a well-groomed privileged rat that refused to eat the poison in the discreet boxes left by the pest control company. And why would she? She was surrounded by delectable food waste from all the cafes a stone's throw away. She drove me nuts, although I got used to her. It was only when the tv cable was chewed through that more radical measures were taken. What kept her out eventually was a metal mesh. For a while, she would appear at the allotted time at night and scratch and scream with indignation at the outrage of being shut out. Then she went away.
This rat, a real story, became a metaphor of my IC pain. The scratching and gnawing is how my cystitis pain presented. It wasn't the classic razor blades symptoms, or the burning that would be the signature pain of the flares. It was this low-level, constant, pain like scratching a metal mesh. I can still see the pain and transport myself rather too easily to how it felt back then. Gratitude and relief fills me when I realise how far I've come from that time.
1 - Pain is subjective
Like much in life, our tolerance levels for discomfort are deeply personal. Chronic cystitis / IC pain will challenge everything you knew about pain levels. Not because it'll be 'excruciating' or 'unbearable' or 'manageable' or 'fine' - but because you'll have to find the pain level at which you can function and get on with life as productively as possible. This pain threshold for you may be zero pain - or it could be higher. Whatever it is, own your pain and find the level at which you can function.
2 - Pain is unrelatable
You'd have thought things moved on from Victorian times and 'Hysteria' (great movie by the way, Maggie Gyllenhaal is magnificent), but I did have GPs and urologists tell me that because there's no infection I must be imagining the pain. I feel bad for even writing this because it seems so cliched, so predictable, so unlikely now that there's so much evidence of recalcitrant UTIs. It makes sense, of course - the doctor you're speaking to isn't feeling the pain for you. The pain is personally yours. But this explains to a large extent why so much of Professor Malone-Lee's positive impact came from believing his patients. For him and his Clinic's staff, infection markers (rather than evidence of infection) were enough for pain to be credible.
3 - The combination of 1 & 2 will create anxiety
The early phase of an embedded infection is gaslighting the patient at a systemic scale. Gaslighting is the psychological manipulation of questioning a person's perception of reality. Primary care GPs simply do not accept the reality of chronic infections, the NICE guidelines prohibit and prevent doctors from veering into patient-centric empathy. This will drive you insane. If you carry any trauma from your past (and I mean any kind of emotional trauma), IC pain will trigger it, sweep it up and create a potent cocktail of generalised anxiety, and health anxiety in particular. Everyone I know who's had IC has been through this. It will be essential to manage the additive trauma of IC through lifestyle changes, mental health support and willpower.
The problem with pain
To improve your chances of getting out of pain, there are three problems with pain that you will need to be aware of first before you can embark on pain management.
Types of pain
Chronic UTIs / interstitial cystitis tends to manifest itself on three pain dimensions.
You will be moving in and out of these dimensions, but eventually you will heal out of all of them.
Chronic / persistent pain
This is the raging inflammation from the original or ongoing infection. This my Rat, or your burning, urgency, and generalised pelvic pain. This is when peeing doesn't help, and you have persistent pain throughout the day - and perhaps night.
Pain management: You will need antibiotic combinations, anti-inflammatories, alkalising supplements, and drugs for neuropathic pain. This is the core of your long-term treatment.
Flare / crisis pain
When chronic pain gets under control, and the living gets easier and even pain-free, triggers in the environment (stress, sex, hormones) may result in a flare - a sudden, intense spike of pain. It usually only lasts a few days, as the body goes into flight-fight overdrive. Some people have a full-blown infection during a flare, which even causes nausea and temperature. These flares get rarer and shorter.
Pain management: On top of standard treatment, this is where 'breakthrough' medication is needed - a shot of Fosfomycin, a doubling of the standard doses, or even a new drug into the mix. Take ACV too to bring down the burning.
Intermittent pain
As you get older, wiser, and more used to the condition, the mind/body connection at the heart of IC becomes more predictable. Adrenal events such as stress, or hormonal imbalances, or slippage of discipline with food create favourable conditions for the pain to reappear. It is different from a flare because it's not as intense, and can even be as short as a moment during the day. As it appears, it disappears. It is best described as discomfort. It is important, though, to stick with treatment throughout.
So what can be done about pain?
Lots of things. This page is about pain management medication and treatments, but there's much you can do to prevent pain too. In my case, I can forget soy, chilli, curry, fizzy drinks, Prosecco, Champagne (dammit!) - and I shouldn't expect anything other than pain if I'm not disciplined about what I eat and drink. At early signs of relapse, you can meditate - it is not new-age mumbo jumbo, it works, and it can be as simple as a self-centered uninterrupted stretch of time to soothe yourself and breathe yourself into believing that you'll get better. Heat is another preventative measure - even if you're not in pain yet. I regularly lie on my bathroom floor with its underfloor heating and double up the warmth with meditation. Lastly, there are supplements to help your body that has been depleted by months and sometimes years of infection and pain.
NSAIDs
Advil, Nurofen are all branded ibuprofen-based medication to help with inflammation. Long-term use is not advised, nor does it fix anything - it just masks the symptoms. Note that paracetamol is not an anti-inflammatory, only a painkiller, so not from the same family of painkillers. So as it stands, the combination of nitrofurantoin antibiotic and ibuprofen is a good one to start to get the initial infection and symptoms under control. That shouldn't be beyond your GP to get going, and it depends how embedded your infection is if this simple combination doesn't cut it at the start.
Amitriptyline
Amitriptyline is a very old antidepressant which nowadays doubles more as an effective painkiller than for its original purpose to treat depression. It's helped me enormously - at deliberately low doses over a longer period of time. There are some reports of wooziness, weight gain and withdrawal symptoms - but this is not something I've experienced. Additionally, amitriptyline helps with sleep, which in turns helps with anxiety. This is the pain medication of choice in the UK.
Elmiron, Lyrica, Gabapentin
These are all heavy-duty drugs for neuropathic pain which I've not had first hand experience with. I've always recoiled from taking these after reading the contraindications. You could argue that my pain was never agonising enough (see note above on "Pain is subjective"). This is not true - it just wasn't strong enough to warrant going down the route of drugs that treat seizures! I know another patient who was on Gabapentin for a while without side effects, so please make your own risk/benefit assessment when you're offered either of these meds.
Cystistat
Bladder instillations such as Cystistat, Uracyst and others contain various concentrations of chondroitin sulfate - the natural "ingredient" if you like in the so-called GAG layer - the protective layer on the inside of the bladder that keeps away the bacteria. The various preparations contain their own version of additives that glue themselves to the lining for the chondroitin to stick better. This treatment was not available to me - and is not as easily available generally on the NHS. But you can get it in private clinics. My chosen route was to supplement chondroitin.
Apple Cider Vinegar
Drinking apple cider vinegar (ACV) is an old home remedy to make your body less acidic and thus alkalise the bladder. It doesn't treat the underlying infection but it relieves the pain and burning you get from inflammation. It is good for your general gut health too, so it works.
Baking Soda
Baking soda is apple cider vinegar's sister. I sometimes mixed the two together into a unholy cocktail, although that causes diarrhoea. Baking soda is another alkalising agent, which calms the burning and pain.
Physiotherapy
A woman's pelvic organs operate in a very compact space. If you had any surgery, gave birth, or if you ended up having bladder surgery - your pain is made worse by your overactive nerve endings and your muscles' inability to relax. Everything is tight, everything is on fire. This is how I came across Helen Keeble's myofascial release massage, and wish I had continued with the treatment. In hindsight, I could see it would have made a difference sooner. This is because - after a skiing accident in 2018 - I developed severe sciatic pain in my back and leg, which after many unsuccessful osteopaths and chiropractors, I started treating with the innovative IDD Therapy. It had the unexpected effect of making my IC pain much much better, indicating that there may be a connection between pelvic tension in the spine and IC pain. That would make sense, because IC pain used to be treated with a TENS implant.