Cystoscopies, Bladder Instillations and Hydrodistension for Interstitial Cystitis
Please note that I am not a doctor and nothing in this post is intended to constitute medical advice. These are purely my thoughts and opinions, which are for entertainment purposes only. Please always consult with a qualified healthcare professional before deciding upon or refusing any particular treatment strategy, dietary changes or supplement regimes.
When people first discover the Tiny Pioneer website, they are often waiting to see a specialist about their bladder pain condition. Sometimes they have only had symptoms for a short time and don’t know very much about their condition; other times they have been waiting a long time for an appointment and have had the chance to do plenty of independent research. People might also find the site after having examinations and receiving a formal diagnosis of interstitial cystitis – often this group is in the process of weighing up treatment options.
In spite of my lack of medical qualifications, I am often asked for my opinions on cystoscopies, bladder instillations and hydrodistension (bladder stretching). I thought I would share my views on these procedures in this month’s post. You should be aware that I have never received any of them myself, so I have no first-hand experience to draw upon. All of my limited knowledge on the topics comes from reading, speaking to healthcare professionals at conferences, and patient anecdotes.
Firstly, let’s talk about cystoscopies. People who are waiting to have one of these usually fall into two camps: they’re either terrified, don’t want it, and want to know if I think it will help; or they have every hope pinned to it and believe that it will provide conclusive information to facilitate efficient and successful treatment. My answer here is usually this: “I am not a doctor and it is not for me to advise you or interfere in what your specialist wants to do. They may wish to perform a cystoscopy to rule out bladder cancer, which is obviously important. However, I would not have one done. I cannot imagine the degree of daily pain I would need to be in to convince me to have one and I do not believe I would be willing to have one even to rule out cancer. I would presume in the first instance that I had interstitial cystitis or some sort of very similar condition and I would explore every avenue of non-invasive treatment, including supplements, medications, strict dietary changes, hormonal testing, and pelvic physiotherapy before I would have a cystoscopy.
“That is only my own personal opinion as it would relate to me and my bladder. I do have a very low pain threshold! Other than the ruling out of bladder cancer, I see no compelling reason to have a cystoscopy until all other options have been exhausted. Any consultant who uses the presence of Hunner’s lesions or glomerulations to diagnoses interstitial cystitis is working to outdated practices. It is possible to have neither of these and still have interstitial cystitis. Hunner’s lesions actually only occur in 5-10% of interstitial cystitis patients. Conversely, it is possible and even common to have glomerulations without symptoms of bladder pain. In other words, what your doctor sees has no bearing on whether or not you have interstitial cystitis, so why bother to look in the first instance?
“Anecdotally, I have heard multiple instances of cystoscopies being painful and causing flare ups. I have heard of many instances where they were entirely inconclusive, or did not lead to an efficient and successful treatment outcome. I have only rarely heard of instances where anything conclusive was discovered that actually helped devise a successful treatment strategy.” I emphasise that last part, because other than being able to brag that your Hunner’s lesions were the worst your specialist had ever seen (and I suspect they say that to all the girls, because I hear it a lot!), knowing they are there makes naff-all difference if it does not lead to decisive and effective treatment. If they are simply observed and tut-tutted over and then you are told that nothing can be done, you have gained nothing from seeing them, in my opinion. The same is true if you are given a choice of treatments that each sound too painful or risky for you to endure. I’d just presume it was interstitial cystitis (or something very similar), presume there would be inflammation and irritation if I did look, and proceed on that basis, working my way from the least invasive to the most invasive options. I know that those with severe Hunner’s lesions often experience relief from having them cauterised, but personally I would only go looking for them when all else had failed.
Whether or not you ultimately go on to have a cystoscopy is a matter entirely for you and your doctors. If you do choose to have one, there are some steps that might minimise the risk of infection, irritation and a flare up of symptoms. Here is what I would do if I did ever have to have one:
- I would start taking Waterfall D-Mannose two or three times a day for a few days before the procedure. I would take an additional dose right before the procedure and another one right after. I would continue to take D-Mannose two or three times a day for several days after the procedure.
- I’d ensure I was absolutely clean before the procedure. If I had to use the bathroom between leaving home and the cystoscopy, I would rinse with bottled water to minimise the chance of bacteria being transferred into my urethra. I am able to tolerate feminine wash so I would take some of that and a wash cloth with me too (though I don’t wash inside my vagina and I wouldn’t recommend anyone to do so).
- I would request intravenous sedation.
- I would apply Desert Harvest Releveum containing 4% lidocaine to the area 30 minutes before the procedure.
- I would request in advance that further local anaesthesia from the doctor be administered immediately before the procedure.
- I would request that lubricant be used and I would take along my own Desert Harvest Aloe Glide to be on the safe side.
- In the lead up and aftermath I would be extra careful with my diet – no allergens, no coffee, no trigger foods, and no sugary foods.
- In the lead up and aftermath, I would take plenty of antibacterial supplements like garlic and vitamin C (NOT ascorbic acid!), as well as probiotics.
- In the lead up and aftermath, I would take Desert Harvest Super Strength Aloe Vera Capsules both for their effect on the bladder and for the general anti-inflammatory and antibacterial properties of aloe vera.
- I’d ask the doctor to be really slow and gentle. It sounds obvious, but I always let doctors, nurses and dentists know that I am nervous and worried.
I would apply all those steps to any procedure requiring a catheter as well, with the possible exception of intravenous sedation. I realise that if catheterisation is required quite frequently, sedation might not be possible.
Regarding catheterisation, I realise that there are situations where it is unavoidable. Personally, unless it was a life or death situation, I would refuse any procedure that required catheterisation until all other non-invasive options had been exhausted. However, where catheterisation is essential, I believe the above steps might go a long way towards minimising any issues. I would also add in the following measures for procedures requiring catheters:
- I would request in advance that the smallest possible catheter be used. They are not all one standard size, so I’d request a paediatric catheter be utilised if possible.
- I would enquire in advance as to whether the catheter would be pre-coated with local anaesthetic and lubricant. If it did not, I would request that some be applied to both it and me before insertion. I would take along my own Desert Harvest Releveum and Desert Harvest Aloe Glide to be on the safe side.
- If I had to be catheterised on a regular basis, I would ask to be taught to do it myself. If you already know how to insert your own catheter, then don’t be afraid to ask the hospital staff to let you do it yourself when you’re there!
For people who have indwelling catheters, I recommend that Waterfall D-Mannose be taken at least twice a day on a long term basis, along with probiotics and good hygiene practices. If finances allow, I’d also recommend herbal or nutritional antibacterial agents and Desert Harvest Super Strength Aloe Vera Capsules.
On the subject of instillations, my main issue with them is that they require catheterisation. The idea of applying soothing liquids directly to the bladder obviously has merit, but I would be very reluctant to have an instillation myself because of their mode of delivery. As previously mentioned, my own personal approach would always be to start with the least risky, least invasive types of treatments first and only advance to the more risky or more invasive types if I saw no progress. That said, I think some consideration has to be given to one’s current level of pain and quality of life when deciding whether or not to have bladder instillations.
Where someone’s level of pain is neither constant nor too severe to bear, I would consider the risk of provoking a flare up to outweigh the possible benefit a bladder instillation could offer. I have spoken to several people who felt that their instillations either didn’t do much, or made things much worse for them. If on the other hand someone’s pain was of such severity and duration that they couldn’t envisage how things could be any worse, my view would be that there is nothing to lose in trying instillations. Indeed, those patients may have much to gain.
Anecdotally, neither my mother nor I have spoken to anyone who feels that their bladder instillations have been a roaring success. The best I have heard is that the first few seemed to help, but then they seemed to stop working. More commonly, I hear that the first few seemed to help, but then the last one provoked a huge flare up from which complete recovery has never occurred. More than once I have heard regret expressed that the procedure was ever tried at all. It is worth noting though that those patients who experience good results from bladder instillations and are satisfied with the outcome are unlikely to be visiting the Tiny Pioneer store or booking an appointment with a medical herbalist. In that sense, both my mother and I are exposed to biased data.
I have occasionally seen people post on forums or in the Bladder Health UK magazine that they have had a positive experience with bladder instillations, so clearly they work for some. The trouble is, even where they work, the results are usually relatively short acting, which is fine when you’re only taking a tablet, but is less fine when you’re visiting a hospital for a procedure. I’d be inclined to limit their use to two groups: those who have tried all the non-invasive options to no avail; and those whose quality of life is so poor that it couldn’t really get much worse even if the instillation itself caused irritation or infection. I would never opt for an instillation as a first resort.
Having got this far, I’m sure you’re now able to guess my views on hydrodistension. Hydrodistension is often performed as part of a cystoscopy to aid in diagnosis, but it can also be performed as a treatment in its own right. Some people do experience relief from it, but this usually comes at the expense of a short term flare of symptoms and it is not a permanent solution. Hydrodistension may cause the bladder to bleed and can lead to bladder wall fibrosis. In some parts of the world it is no longer recommended as a method of diagnosing interstitial cystitis and in America, it is considered a third-line treatment, which means less invasive therapies should be tried first. I cannot envisage circumstances in which I would be willing to risk hydrodistension as a treatment strategy. I think the potential to worsen the situation or to cause permanent damage far outweigh the possible short-lived therapeutic benefits for the majority of people.
Before I go, I’ll just say a word on urodynamics. This requires not only catheterisation and the filling of your bladder, but also electrodes. I don’t recall ever having spoken to anyone who has had urodynamics performed, but in their book ‘The Interstitial Cystitis Solution’, Nicole and Jesse Cozean state that “it shouldn’t really be performed unless you see no improvement with multiple IC treatments and your doctor is concerned there may be another condition to address”. It is painful, it is not necessary for a diagnosis of interstitial cystitis to be reached and it is most commonly used to diagnose an overactive bladder. As an overactive bladder is rarely painful, there is no way that I would subject myself to a traumatic and invasive diagnostic test just to get the correct label for my symptoms.
I think people sometimes become rather too preoccupied with having a label for their condition. I feel that it is often more pertinent to focus instead on the end goal – to feel better. If you have pain, burning, frequency, spasms, or related symptoms, does it actually really matter about getting exactly the right name for it? Is it not more important to find a way to heal whatever it is? I realise that having the label can sometimes serve as a road map as to what direction to take on the healing journey. However, genitourinary conditions tend to be so similar, so overlapping and so complex that even the correct label does not usually point to a clear solution.
For this reason, when dealing with a bladder or genital pain issue, I would always want to start with the easiest, safest, least painful options first. Obviously the initial step would be to check for and address any bacterial infection. Provided that there was none and there was also no reason to suspect some sort of cancerous condition, I would always first consider making strict dietary changes and using supplements like Waterfall D-Mannose, Desert Harvest Super Strength Aloe Vera, marshmallow, slippery elm, quercetin and antibacterial agents. I would consider posture as a trigger – in particular excessive amounts of sitting – and would pursue pelvic physiotherapy if I felt this might be a factor. I would get the doctor to check my reproductive hormones, thyroid hormones and iron levels. If they all came back normal, I would consider paying privately for more comprehensive tests of these. I would consider getting a food intolerance test done. I would try TENS machines, yoga and osteopathy.
If I found no joy with a combination of these, I would then try some of the prescribed medications that my doctor might offer to me, working from those with least side effects and risk of dependency to those with most side effects and risk of dependency. Only when I had exhausted all options would I then be open to invasive diagnostic and treatment strategies. But as I said at the start, I’m not a doctor and all of that is just the personal opinion of somebody who still uses numbing cream to get blood tests!
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