I discovered early on in my IC journey that supplements proposing to help the condition are EVERYWHERE. It’s all a bit overwhelming. What works and what doesn’t? The intrigue of IC is what works for one person, won’t work for another so the only way you will know is to try it. This can become quite a costly experiment. I hate to think about how much money I have thrown at supplements with limited or no success. I could have a Mulberry handbag instead of a medicine cabinet under my bed.
When I first started experiencing symptoms and hoped it was an UTI, I stocked up on the natural supplement D-Mannose by a company called SweetCures. They state their D-Mannose will stop UTI and cystitis symptoms. Their website boasts several awards for being the “Best Alternative Product”. Hundreds of reviews on the internet from happy customers agree. It comes in capsules or a powder which you add to a drink of your choice.
Some patients with IC have said they saw a reduction in their symptoms when taken long term and SweetCures recommended treatment over a three month period.
At their minimum recommended dosage for IC patients, three months treatment will cost £160. At their maximum recommended dosage, it doubles to £320.
I had no success with D-Mannose but I was only taking it for a few weeks. I became disheartened that I was reaping no benefit and stopped due to the cost. I, like many patients, don’t have an endless supply of cash to throw at treatments.
Quite a few popular IC supplements are aimed at the American market so are harder to get hold of in the UK and we can pay a premium for the privilege. I have researched a few;
Desert Harvest conducted a controlled study of their Aloe Vera Capsules in IC patients. Results showed 87.5% of patients who completed the study received relief from at least some of their symptoms. Sounds promising. That’s not to say I haven’t read about people who have had no reduction in symptoms or it has simply made their symptoms worse.
Again, it’s recommended to take these capsules for at least three months. If I follow the minimum recommended dosage, this would cost £144 for three months treatment. It could go up to £240 depending on whether my symptoms improve or not throughout the three months and I have to up the dosage (prices calculated from UK supplier tinypioneer.co.uk and excludes postage). So, this is cheaper than D-Mannose but still costs a fortune!
I have discovered that Desert Harvest will send you a FREE trial pack of 6 aloe vera capsules. This is equivalent to one day of treatment. It might be enough so you know whether or not you have any adverse side effects but in reality, you are unlikely to see any difference. Either way, I love a freebie so I have just sent off for my pack (not sure I’m allowed to say freebie judging by their website address)
http://www.desertharvest.com/info-pack-notfreebies.html
CystoProtek capsules state they been clinically tested to help promote bladder health (no other information on their website about this). I have read lots of positive reviews from IC patients. A quick look on Amazon and I can get one months treatment for £58.
Cysto Renew is another popular one claiming to help calm the bladder. One months supply is currently selling on Amazon for between £48 and £83.
I know there are plenty of other supplements out there and these aren’t my only choices but I am gobsmacked at how much they cost.
As much as I would love to try Desert Harvest Aloe Vera, I can’t afford it. Not when there is no guarantee of success.
In comparison, a prescription in the UK costs £8.40 for one item. However, natural or alternative medicines are not available on prescription. My consultant couldn’t even recommend the IC diet because there was no medical backing, yet all you need is a Google search to see how it has successfully helped thousands of sufferers.
I tried the following supplements for a minimum of three months with no noticeable difference to my symptoms;
Prelief
L-Arginine
Marshmallow Root Capsules and Tea
Glucosamine, Chrondriotin & MSM
These supplements I stopped taking before three months due to inefficiency, side effects or increasing my pain;
D-Manosse
Quercetin with Bromelain
N-Acetyl Glucosamine
So, as you can see, I had no success with supplement whatsoever. The only difference they made was to my bank balance!
That’s not to say they won’t help you. My advice is research carefully before investing your hard earned money.
Emma x
(This post was updated in July 2018 to show which supplements I have tried. I currently take no medication)
Broken Bladder 
My hope in responding is this: First know the underlying cause – if possible and use good judgment with visits to a range of qualified honest health providers -stay far away from big pharma drug pusher M.D.s – that actually fits your illness. There are a host of ills caused by various vitamin deficiencies – go read “Could it be B-12″: Niacin; The Real Story”: Vitamin C The Cure(Not certain of this title, but so much Vit C deficiency research exists it will work!): Vit. D deficiency’ many symptoms: Selenium deficiency causes a host of issues: and the other side of health, those toxic additives in processed foods that interfere with nutrients.
Then and really only then are you set to discover the return to health method and nutrition your body requires.
I have prostatitis that came on suddenly with switch from olive oil to the toxic sunflower oil used in most processed foods and my additional use so irritated my prostate is blocked urine flow. Naturopaths and big pharma doc alike are zero help! Finally I am getting back to health with Dr. Johanna Budwig’s Flax Seed Oil and Fermented Milk(Cottage Cheese in my case) blend and fruit, grain and dark green leafy vegetables, and daily hydrogen peroxide(1%) flush of my bladder to control bladder bacterial producing calcium stones that block the catheter, which no doctor will prescribe, but I found a permanent catheter wearer who is quadriplegic who has not had to change his catheter in three years, instead of the 6 weeks’ max doctors practice due to their use of ineffective bacterial control.
Hope it is encouraging to research your unique issues.
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Thank you for your comment! I will definitely look into what you have suggested. Hope you are keeping well.
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Hi,
I know this blog post is four months old, but I thought I would leave you a message anyway. I was actually researching what people were saying about DH Aloe Vera, and whether it was worth spending so much money on yet another product (not to mention their postage to the UK which is more expensive then some of their products) when I found your blog post.
You are completely right. When someone is suffering and in pain, the only thing they can think about is getting relief. We are in that horrible position with the understanding that there is no price to being pain free; we would sacrifice so much to be able to live and enjoy a normal life.
I’m not saying that these products don’t help. But we are definitely being taken advantage of. The prices are ridiculous. It’s like being on a vegan diet; once you’re in a minorty that desperately needs a niche product, companies are going to put their prices as high as they can. We are a target audience. They tune into our desperation, and offer us hope. But at what cost?
What happens when we find no relief? We move onto the next product. And in all this time we are reading forums, and obsessing over our condition, looking for the next ‘instant’ cure. Our pain is on our mind all the time, and we get worse.
The times when I have found relief have been when I stopped this vicious circle of research, spending money, and then doing more research on ‘why isn’t this product working?’ I even managed to travel during a flare, because I wasn’t thinking about my symptoms as often and they became so much more manageable.
It’s important to be informed, and to listen to others who offer information about alternative treatments. But when you have been in this position time and time again, it really makes you wonder. Like, why am I reading a post from 2002? How can this kind of information possibly be worth spending my money on?
I hope that since this post you have found some relief. But I am happy that you are questioning what should be questioned. My two cents: I think its important to focus on the things you can afford to control (diet, things we can eliminate, stress factors) before we throw our money away on these ‘wonder’ products. The internet is full of desperate stories. I bet all the silent ICers out there have different tales to tell.
Georgina x
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Hi Georgina, thank you so much for your comment, your thoughts exactly echo mine! I could have written it! I also could have spent my life savings on things to “cure” me and I’m not sure how much success I would have had. It’s a pricey chance to take.
I still haven’t bought any DH Aloe Vera. I cannot justify the money until I exhaust some cheaper supplements and other treatments. I am currently taking Marshmallow Root and Magnesium and I have Turmeric and Glucosamine/Chondroitin to try (my last batch of that flared me for a good month before I realised 🙈 I’ve now changed supplier)
I follow a Facebook group called “Healing IC Naturally” which might interest you. I do not adopt the very drastic dietary changes that a lot of members do but there’s lots of information on supplements etc and it can be interesting.
There are so many members on there desperate for relief from their daily struggle, it’s very sad to read.
For now, I’m persevering with instillations, diet and affordable supplements. I don’t see that my IC is affected by stress which I’m thankful for!
I think you 100% have the right attitude and I wish you luck in your journey 😊 xxx
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Also I just wanted to add because I haven’t seen this anywhere – Germoloids ointment (can get it anywhere for like £4). Applying as per the instructions (it’s for hemeriods) and it’s actually quite soothing for the urethral burning. Try it and you’ll see what I mean, haha! X
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Thanks for the tip! I’ll pick some up! xx
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All very interesting indeed, I’m reading desperately as want to help my son, he’s just started suffering from this and it’s come out of nowhere. It’s massively affecting his life, he won’t go out because of it, is becoming very low. He doesn’t think it’s related to stress, he finds he might be in a situation where he is very comfortable and it will come on and he will leave as the discomfort is impossible to ignore. I’d never heard of this before and it’s changing our lives. The cost of possible cures is huge and as so many of you say they might not even work but we are so desperate. DH could at least give a more generous freebie!
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I’m so sorry to read your son is suffering. I don’t believe mine is linked to stress either although many find stress is a trigger. Has he made any adjustments to his diet? This is the first thing I would suggest as so many people find it helps and it’s free!
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