What would you do differently if you could see the inside of your bladder or bowels? How would it alter your attitude to their healing process? I frequently hear from IC sufferers who are experiencing only limited relief from symptoms with Desert Harvest Aloe Vera Capsules, Waterfall D-Mannose, or other herbal and nutritional supplements. They are usually aware that what they eat and drink can impact on their wellbeing, but all too often they tell me they ‘mostly follow the IC diet’ (which I don’t recommend – see this blog post), or ‘try to avoid gluten’, but on closer questioning what they mean is they still eat/drink things that they know exacerbate their symptoms at least a couple of times a week, even though for some days of the week they comply with what they believe to be appropriate protocols.
“Will D-Mannose help with my interstitial cystitis?” is one of the questions I am most frequently asked by customers, closely followed by, “Can I take D-Mannose and the aloe vera capsules together?” I have therefore decided to write a blog post to address these in detail.
Regarding the latter, the answer is a simple yes. Yes, you can take D-Mannose and Desert Harvest’s Super Strength Aloe Vera Capsules together. And yes, you can take each or both of these alongside any other medication you might be using as well. Regarding the former, the answer is less straightforward, but if I had to sum it up in one word I’d go with ‘probably’.
I’ve been struggling with how to write this blog post for weeks now. Having been candid in my thoughts regarding the IC Diet, I knew I wanted to write about the nutritional approaches I DO recommend for managing interstitial cystitis. I receive quite a lot of enquiries from IC sufferers and in general they have had no dietary advice from their doctors or specialists, nor are they aware that their condition may be very much improved with some adjustments to their eating habits (beyond the avoidance of orange juice and coffee). Having been passionate about nutrition since my late teens, as well as managing my own anxiety, tummy troubles and persistent genital arousal disorder (PGAD) with careful nutritional practices, I almost take it for granted that everyone understands the link between gut health and overall health. I also tend to assume that everyone knows how to eat in a way that will restore them to good health, whatever ails them. However, when I ask people, “Have you tried eliminating this?” or, “Have you tried doing that?” they usually sound quite surprised that this may have any bearing on their bladder symptoms.
As cystitis is such a painful condition, with IC being especially debilitating, I wanted to write a post to encourage sufferers to take a look at their diets and perhaps try a new approach to addressing their bladder health. However, these tips are certainly not limited to managing IC – they make up the nutritional foundations of addressing a wide range of chronic health conditions, including among many others:
- Pre-menstrual syndrome (PMS)
- Rheumatoid arthritis
- Chronic fatigue syndrome
- Type 2 diabetes
Most interstitial cystitis sufferers know that vitamin C comes in many forms and understand that, for the majority of people, only the ascorbic acid form is irritating to the bladder. Other forms such as Ester-C and mineral ascorbates are usually perfectly safe for sensitive bladders, even in high doses. I get bladder pain from only tiny amounts of ascorbic acid, yet can take magnesium ascorbate all the way to bowel tolerance with no urinary side effects at all.
Far fewer people seem aware that vitamin B6, also often blamed for bladder irritation, also comes in different forms. The one most commonly used in multivitamin supplements or B-complexes is pyridoxine hydrochloride, although pyridoxal and pyridoxamine can also be found in some brands. Before these can be utilised by the body, they must be converted into the active form of vitamin B6 – Pyridoxine-5’-Phosphate (P5P). For many individuals this is not a problem and the conversions occur just fine. However, some people are unable to carry out the conversions efficiently enough and can therefore fail to absorb sufficient B6 from their supplements. Most IC sufferers avoid B6 anyway, relying only on food sources to get enough.
Reading around interstitial cystitis forums as I occasionally do, I am often frustrated to see posts from people who follow the IC diet, yet continue to experience symptoms. While the IC diet may work as an emergency short term strategy for a minority of people, I have absolutely no time for it as a long term strategy for the majority of IC sufferers and I am going to use this blog post to outline why. If you are unfamiliar with the diet but are interested in why I don’t like it, you might want to Google it and have a look at the list of safe foods and unsafe foods before you continue with this article. If you have been following the diet without much success, or with limited success but without a sense that you’re actually healing, this post is for you.
It should be noted at this point that I am not a doctor and the views expressed here are purely my own personal ones. Do your own further investigations, consult with professionals and don’t take my word for anything! There will inevitably be people for whom the IC diet has been a roaring success, so if you’ve never tried it and want to give it a whirl, by all means have a go and if it works for you, hurrah! If it doesn’t you can always come back later, have another read of this and see if you find it helpful further down the line. In the meantime, this post is likely to be most useful for those who already follow the IC diet, continue to experience symptoms and have no idea why this might be the case.
Following on from Part One where I talked about feelings of denial and anger in making major changes to diet and lifestyle, I wanted to continue in Part Two by discussing the final stages of grief – bargaining, depression and acceptance. We tend to associate grief only with really traumatic events like deaths, relationship breakups, or rehabilitating from serious addictions; however, when we have to eliminate certain foods or behaviours from our daily lives we can go through a similar, albeit less marked, grieving process. Hopefully this two part blog post will help to prepare those of you in the early stages of making changes for any negative emotions you may experience en route to acceptance!
If you are affected by a chronic health problem, sooner or later you are probably going to need to make some fairly major, permanent changes to your diet and lifestyle in order to improve your condition. Reading around nutrition books and blogs, you may get the impression that with a bit of grocery and kitchen organising, this should be a quick and easy process. Tales abound of people drastically changing their lifestyles overnight and turning their health around as a result. However, people tend not to write about the emotional impact of making such changes, leaving us to conclude that any setbacks they experience are due to lack of knowledge rather than lack of willpower.
In reality, making significant and lasting changes to eating habits can be difficult, because for most of us, eating is not something we do simply to obtain nourishment. We eat for pleasure, we eat to socialise, we eat things because they taste nice. However, the foods we are unable to tolerate are very often the same foods we most crave, so while eliminating them on a short term basis may be quite easy, the prospect of resisting them long term – perhaps permanently – can be very daunting. This means that many of us, even upon experiencing clear negative consequences of eating certain foods, continue to eat them more often than we should for far longer than we should, which can lead to lots of self-recrimination, especially if we believe that top nutritionists and all our favourite bloggers never fall off the proverbial wagon.
A flare up of persistent genital arousal disorder (PGAD) can be a frightening as well as deeply uncomfortable event. If you have been dealing with the condition for a while, you have probably already developed your own strategies for easing it, though there may still be some ideas here to help you further. If this is one of your first flare ups, you may well be experiencing real panic and despair, wondering however you can find relief. Below is a list of things that I myself have found helpful during PGAD episodes. Some of these may also assist with flare ups of interstitial cystitis (IC), which has a lot in common with PGAD.
Please note that I am not a medical professional and if you try any of the things below, you do so at your own risk. Please note also that the majority of these ideas do not address the underlying causes of PGAD, but are presented merely as symptomatic relief for when an attack strikes. You can learn more about PGAD in my previous blog post, Introduction to Persistent Genital Arousal Disorder. The contents of this blog post are the intellectual property of Tiny Pioneer and tinypioneer.co.uk and may not be copied or published elsewhere, except by the official ‘share’ buttons at the bottom of this page.
Persistent Genital Arousal Disorder (PGAD) is a condition where a person experiences prolonged and intrusive sexual arousal without accompanying sexual desire. In its simplest terms, you really, really feel like you need to orgasm, to the point where it becomes an unbearable sensation, but you have not been thinking sexual thoughts or partaking in sexual acts that have caused you to become actually turned on. Worse still, if you actually do orgasm, the feeling often does not abate. Therefore, while sex normally (hopefully!) consists of a building of desire, culminating in release and relief upon one or more orgasms, PGAD tends to be characterised by an intense, sometimes painful need to climax, after which the need to orgasm remains and may even worsen as a result of the increased blood flow to the genitals. Sufferers can become stuck in a vicious cycle where the need to orgasm grows until it can be resisted no longer, and then continues to grow with each orgasm. Some people have over 100 orgasms a day, which far from being pleasurable is actually distressing, exhausting and painful.
Following on from my first blog post where I discussed my experience with Liposomal Vitamin C, I wanted to write about what I did to actually relive my symptoms during my cystitis flare up. Please bear in mind that I knew what had caused the flare and was certain that there was no infection. If there is ever any doubt about the presence of infection, I would recommend that you get checked out by a healthcare professional and treat the infection as well as its symptoms. Allowing infection to go unaddressed may lead to kidney infection, which is a more serious issue.
In the past when I have had cystitis, there has always been infection present and so I have never much bothered to treat the symptoms, just the actual infection. I’ve used antibiotics and D-Mannose to do this and since regularly using D-Mannose I have never had a bacterial bladder infection. (I feel most uncomfortable writing this, as if it is tempting fate somehow, but I feel I must be truthful!) I follow a very good diet anyway, drink plenty of water, avoid processed foods and sugar, and don’t drink alcohol, so all the sensible lifestyle and nutritional practices are covered for me as standard.
I’ve been fascinated with the idea of taking megadoses of vitamin C during times of stress or following exposure to viruses since I first discovered the work of nutritionist Patrick Holford over a decade ago. He advocates taking 3g of vitamin C every four hours at the onset of a cold, until all symptoms are gone. Plenty of other nutritionists and complementary healthcare providers support this view, with an article on vitamincfoundation.org even advising doses in excess of 100g a day for some conditions. While I have never reached (or felt the need to try to reach!) these dizzy heights, I have on several occasions exceeded 10g per day, usually when I have been in the throes of a cold.
Welcome to the new Tiny Pioneer website! We’ll be uploading all the old blog posts soon, but first we wanted to write a post all about what has been happening over the last couple of weeks. We never had a proper introductory post on the old site, so it will be nice to have a logical starting point for the blog on this site.
If you’re a returning reader, you won’t be able to fail to notice that everything on tinypioneer.co.uk is now looking and running differently. To cut a very long story short, the old Tiny Pioneer site broke during some technical updates that had to be carried out in order to keep it secure. We really hoped it would be fixable, but after days of waiting and trying to get it back, we were advised to cut our losses and start again. Funnily enough, we had been investigating the possibility of a fresh site just a few weeks earlier, but we’d always imagined that we’d have time to prepare for a move and ensure a seamless transition from one platform to another.
To us – and to Tiny in particular – tinypioneer.co.uk is not just a website, but a labour of love that has great sentimental value. It was absolutely devastating to see the ‘fatal error’ messages on the night it broke and to know that the old site would never be coming back. Not only stressful from a business perspective, lest we lose customers or suffer a blow to our reputation, it was also emotionally stressful thinking that we’d never see the website in quite the same way again. We still had all the content saved, of course, but every aspect of the old site was built by Tiny herself and it was really sad to see it wiped out.