EP.205/ What’s Helped Control My Interstitial Cystitis symptoms

Podcast

27 Jun

Trigger warning: Brief conversation about a car accident.

So, some of you may know that for the past, I guess, three years now, I’ve been deep in the trenches with interstitial cystitis.

I developed interstitial cystitis almost about 17 or so years ago, following a car accident when I was 17. I broke my left hip, my pelvis, my spine and my pubic ramus and was temporarily paralysed, and was then on bed rest for several weeks. During this time I had a catheter put in, and unbeknown to me, this delivered the first of two chronic infections. Of course, for the first year any unusual symptoms and pain I had in the pelvic region I put down to the car accident, and then when I started developing endo symptoms a year later, once I was diagnosed, I assumed all bladder issues were caused by my endo.

It was only when I reduced all my endo symptoms and was having pain free periods, that I noticed this other pain - which I had always thought was endo - felt specifically isolated to my bladder. The pain I felt was different from my classic endo pain. It would get worse when my bladder filled up and was excruciating after I emptied it, and felt very isolated to my bladder, whereas my endo pain not only felt different, but felt further back, exactly where the endo was, which was behind my uterus, and I also felt it around my ovaries. My bladder pain was nearer the front and felt more like an acidic burning that only came when I needed to urinate or following urination. Additionally, this pain was accompanied by urgency, frequency, pressure (as if someone was pushing on my bladder) and a feeling like I hadn’t fully emptied my bladder when I went.

Interstitial cystitis or painful bladder syndrome, as it’s more recently been named, and is defined as ‘a chronic pelvic pain condition characterized by urgency, frequency, pressure, and or pain in the bladder or pelvic region, for more than six weeks, in the absence of an identifiable infection or other causes or conditions’ and that definition is from my friends at IC Wellness.

There is not usually one definitive cause of IC. It’s normally caused by a combination of factors such as inflammation, adhesions, pelvic floor dysfunction, histamine intolerance, fungal and bacterial overgrowths, chronic embedded UTIs and more. That’s’ why it can be so tricky to treat, because there’s usually multiple areas to address.

Now, IC is a co-condition of endometriosis, but it’s also a co-condition of SIBO. In fact, some of the bacteria that cause SIBO, are the same bacteria that cause chronic UTIs, and because SIBO can also cause histamine intolerance and inflammation, SIBO can be a real driver behind IC.

In the past three years, my IC has really ramped up, and I explore this in other episodes, but my drivers are two hidden chronic UTIs, histamine intolerance (perhaps caused by MCAS), SIBO, likely SIFO, pelvic floor dysfunction, adhesions and an upregulated nervous system.

I am on a waiting to see a urologist who is versed in MCAS and who I am hoping can help me treat the two chronic UTIs at the same time as getting the MCAS under control. I’ve already done a lot of pelvic floor and adhesions work, though the adhesions need much deeper treatment and I treated SIBO last year. Unfortunately, I need to treat my SIBO again as I’m a rapid relapser, which means I have a root cause behind my SIBO that’s so significant that I could hardly stay in remission for more than a few days, but first, I need to discover the root cause.

For those of you who listen to my show, you may know that I’ve decided to prioritise my IC first, because I didn’t find treating the SIBO that affective at healing my IC symptoms, and so I wanted to get them under control a bit before I throw myself back into the SIBO game, which really requires 100% of my attention and doesn’t mix very well with IC treatment.

So, as I said, I’m on a waiting list and I did an advanced test to identify these two chronic UTIs. Whilst I wait, I have been working on managing my symptoms as best as possible, and for the first time in three years, I’m living with less bladder pain – and trust me, I have tried a lot of strategies.

So today, I wanted to share with you what’s finally worked for me to get my bladder symptoms under control.

I want to be clear that I believe whole-heartedly in root cause resolution, otherwise, we’re just forever controlling or masking symptoms with medications or supplements, which could result in the issue worsening without our awareness or further complications down the line. But I am also acutely aware that we sometimes need a little boost just to get us out of the pain cycle to enable us to move forward with healing the root causes, so that’s what this episode is about.

And a final disclaimer, this episode is about what’s worked for me personally, rather than a more informative episode that’s about research and studies etc., so please keep in mind that what worked for me may not work for you. However, I hope that by sharing my journey I can help some of you also experience relief.

Aloe Vera

So, for me, aloe vera was my break through. Up until this point, I was in consistent, high-level pain for a straight two years, every single day. For about 18 months, I was getting between no sleep to about four/five hours sleep a night. A six-hour sleep night was a good night. And honestly, it was destroying me. The pain felt unbearable but I couldn’t get it to shift.

Then in my training and my podcast interviews with various IC experts, I came across aloe vera supplementation for IC. Desert Harvest is an interstitial cystitis specific brand which makes supplements to aid with the pain of interstitial cystitis and also supplements like multi-vitamins, which have certain bladder irritants removed. They have been involved in a few studies and research papers, and some of the results are pretty outstanding, for example, one survey of 660 customers found:

92% reported they experienced relief

63% “reported substantial improvement in urgency and frequency”

69% of patients “reported substantial improvement in pelvic pain”

68% of patients “reported substantial improvement in urethral burning”

The theory behind aloe vera working, and the limited research we have so far, indicates that aloe vera works by helping to repair the bladder lining via glycosaminoglycans, otherwise known as GAGs. GAGs are types of carbohydrate molecules called polysaccharides and these polysaccharides usually create a protective mucosal lining in the bladder that prevents acids, bacteria, etc. from penetrating the bladder wall and causing damage. However, in people with IC, there is the potential that this protective lining has thinned out or is no longer present, and so we can rebuild the lining with GAGs from aloe vera, allowing the actual lining to repair and prevent further damage.

Now, when I first got these, I followed the label dose and felt some relief but not a huge amount. Then I revisited the website and read their protocol, which requires you to build up to 12 capsules a day over three months, and then reducing until to symptoms return to find the dose you need personally. When I followed this protocol, the relief was significant. I would say on a daily basis, I’ve gone from having nightly pain that was up around an 8-10 every single night to about a 4 on average, though it is sometimes less and sometimes more. During the day my bladder pain was probably at a 6, though in the bad times it tended to be more, and it’s now probably again, a 4.

So, this has given me quality of life back. I no longer feel like I’m living in a state of emergency where my body was in acute daily pain. The pain is there but it’s background pain and it’s manageable, whereas before it was so bad I felt miserable, life didn’t feel worth living and it was hard to get through each day and even worse at night.

Now, unfortunately, it’s hard to get Desert Harvest in the UK. The shipping costs are really expensive and each bottle is already a lot of money, especially when you have to take two or three bottles a month to follow this protocol. Now, of course, you might not need the dose I need, so you could be fine with a general aloe vera supplement, but today I’m talking about what’s worked for me and why.

So anyway, I needed to use these capsules specifically because of the dose and their effectiveness, but it was costing me so much money. Eventually I found one UK brand called Tiny Pioneers, who actually have their own aloe vera capsules which are the same strength, so I moved onto them. These days, I seem to be able to have 8 capsules a day and that seems to have me in the place I was originally at with 12, so things are improving, but I can’t really go below that yet. Given that there are root causes that need being addressed, this doesn’t surprise me because it’s rarely ever just ‘one thing’ with IC, so it’s about approaching the problem from various angles and as I solve the root causes, I hope I’ll be able to reduce.

Quercetin

Next up is quercetin. So, you may hear me discuss quercetin from time to time because I use it with my clients for endometriosis itself, but also for SIBO and histamine problems. Quercetin is an antioxidant in plants that can be taken as a supplement.

Quercetin has been shown in studies on rats to inhibit endometriosis growth by lowering oestrogen levels, stunting its development.
In another rat study, quercetin significantly reduced the size of endometriosis lesions.
Quercetin is anti-inflammatory and immune supportive, which is of course important with endo as we know inflammation is high and the immune system is compromised.
Quercetin has been shown to significantly reduce pain in men with chronic pelvic pain syndrome – though it would be great to have some studies on women!
It’s also a great leaky gut healer and is one of the supplements I recommend trying first for leaky gut due to its other benefits.
Finally, it’s a powerful antihistamine which can be used for reducing allergic reactions, histamine intolerance and asthma symptoms.

I was pretty happy with my supplement regime so I hadn’t used quercetin very often until the past six months. I think I used it during my low histamine protocol but it was in combination with a lot of other herbs and supplements. Anyway, I started using it in high doses that were shown to help with MCAS patients and it’s really the only thing that helped get my chest pain under control. But as I continued using it, I noticed my bladder pain improve too.

It took what aloe vera was doing and enhanced it. Now, there are two mechanisms of action that this could have taken, in my opinion. 1) It reduced bladder inflammation, which given that I have two embedded chronic UTIs, it would make sense that there would be inflammation in the bladder. 2) We know that there are higher levels of mast cells (reminder, those are immune cells that release histamines) and histamines in the bladder of people with interstitial cystitis, and so by stabilising mast cells, which is how quercetin acts as an anti-histamine, we can lower the release of inflammatory histamines.

My allergies have dramatically improved since using quercetin, and I’ve also noticed that I can be more flexible with my diet and lifestyle without triggering endometriosis pain and problems. And on a side note, I find clients who don’t respond well to the usual tools and strategies I use and who are also very reactive to histamines, they usually do well with quercetin and it’s normally getting in control of their histamine problems which really creates a significant difference. We know that mast cells and histamines are involved in the development of endometriosis, so this would of course make sense.

Magnesium spray

Next up is my trusted magnesium spray. This isn’t really something that keeps pain down overall, like quercetin and aloe vera do, but it’s something I use to calm acute flares. So, if I find that my pain is building at night, or my bladder is very reactive and I keep needing to wee, when I have one of those bad nights, if I spray with magnesium, everything starts to calm down.

Magnesium is a muscle relaxant, and because the more stressed I get with pain, the more tense my muscles get and the worse the pain gets, I find I can interrupt that loop by softening and relaxing my pelvic muscles with my magnesium spray.

I find it’s often the only thing that’ll help me drift off on those bad nights. It doesn’t take away the pain entirely, but it usually enables me to sleep with it.

Now, I will say that this has only been able to work so well since I’ve been using the aloe vera. Prior to that, the pain was so bad that nothing would help me sleep, and so of course, I wouldn’t! So, if your pain levels are high, you might find you need a combination of tools to target it. The magnesium still helped me before the aloe, but it wasn’t enough to bring the pain down significantly.

BeYou patches

Next up are my BeYou patches which you all know I love for managing endo and period pain. Just like magnesium, I use these to take the pain down a notch so that I can sleep.

I pretty much wear one every single night, and the essential oil properties help to ease any bladder spasms and lower inflammation, and I find that’s enough to take the edge off and allow me to fall asleep without any issues. Even now, with aloe and quercetin, I tend to need these because without, I notice the pain at night can still escalate. We know that interstitial cystitis tends to be worse at night, in terms of symptoms, and so I just find the BeYou patches nip that in the bud before things get too far and I get stuck in a stress loop cycle.

For me, it’s a bad night when I’ve got one of those on and yet I still can’t sleep due to the pain, that’s when I’ll bring out the magnesium spray.

Chamomile tea

After a bad night, I’ll often also have a bad day. Or sometimes, if something has really inflamed me, I’ll wake up and have a bad bladder day. For me, I know it’s bad because I’ll wake up and it’s almost like the inflammation from my bladder has spilled out across my pelvis and down my legs, sometimes throughout my body and I’ll get this horrible knee ache which is what I always get as soon as I’m super inflamed or I’m unwell, like I have a virus or something.

Now in reality, of course, the pain from my bladder hasn’t really spilled over, but it’s very likely I’ve had a histamine reaction to something and because for me, I am very reactive to histamine triggers and likely have MCAS, that just creates a full body inflammatory reaction.

Anyway, those days are my worst days. My bladder pain is at a 10 all day long and my body is heavy, and my joints ache to the point where it’s even hard to stand and shower.

Oddly enough, despite this being a very gentle approach, I find concentrated chamomile tea very helpful on these days. Chamomile tea, when left to brew for a good 10 minutes, develops a slimy consistency which can coat the bladder lining and soothe inflammation. You won’t really notice it when you drink it, but your bladder will!

Like aloe, this is a tricky one because chamomile can worsen SIBO as it contains certain carbohydrates and fibres like polysaccharides which can feed SIBO. However, as with everything SIBO, it’s about tolerance, so if you find you can tolerate chamomile tea without a flare up or symptoms, then you should be okay on it.

Physio

Lastly, whilst it didn’t help with pain, I did find that pelvic floor physiotherapy helped with my bladder urgency, frequency and with bladder emptying. My bladder certainly doesn’t behave like a healthy bladder yet, and I still have trouble passing urine and then needing to go again immediately afterwards, or feeling like my bladder hasn’t fully emptied, but it definitely took the severity down a notch, and I do think that for people with endometriosis, because the pelvic floor is so involved, that usually it is also involved in interstitial cystitis symptoms too.

What else could be helping?

So before we wrap up, I just wanted to say that these tools and strategies aren’t being used in isolation. I have created a foundation of anti-inflammatory practices to support my interstitial cystitis and these practices have provided me with a foundation to build upon. So, for example, I eat an anti-inflammatory diet, for the time being, I keep out supplements and supplement ingredients that are known to irritate the bladder like vitamin C in the form of ascorbic acid, B6 and citric acid; I also avoid my histamine and bladder triggers like tomatoes and lemon (which I hope to be able to add back in soon as long term restriction isn’t healthy). I also generally lead a healthy lifestyle so that my body isn’t inflamed and has the resources it needs to heal; I rarely drink alcohol, I exercise, I try to sleep enough when my bladder allows, I have magnesium baths, etc.

So, I doubt that the above tools and strategies would work as effectively if I wasn’t also looking after my body. So for example, if I was living off processed foods and take aways, not really eat fruit and veg and drinking a lot of alcohol, staying up late, etc. my body would of course be inflamed, so it would take more work to bring these inflammation levels down and to further support healing.

So, my suggestion is, if you feel like your lifestyle and diet could do with some improving, then I would start there, with the foundations of a general healthy lifestyle, before spending lots of money on fancy supplements.

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This episode is sponsored by BeYou. Soothe period cramps the natural way with these 100% natural and discreet menthol and eucalyptus oil stick on patches and CBD range. Click here to find out more and to shop: https://beyouonline.co.uk

This episode is sponsored by Semaine. Try their supplement for period pain and daily supplement for hormonal balance and PMS prevention with code ENDOLIFE to get 20% off your first order.

Show notes

IC Wellness

Aloe vera brands/research

Desert Harvest and protocol

Tiny Pioneer

Healthy Life Harvest

https://www.desertharvest.com/physicians/documents/DH162.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1476005/

Quercetin

https://pubmed.ncbi.nlm.nih.gov/19462895/

https://www.hindawi.com/journals/ecam/2014/781684/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4808895/