Day 46: The dangers of self-diagnosis

When I first began this challenge and this blog just over six weeks ago, I was excited and enthusiastic, viewing this elimination diet as a potential light at the end of a year-long tunnel of chronic pain. By the middle, I was worried, frustrated, and feeling a little bit silly – what if I’m wrong? What if this doesn’t work? What if I’m putting myself and Boyfriend through this for nothing?

To be honest, even though I am now on my fourth pain free day in a row (can I get a cheer please? Hooray!), I still don’t have all the answers. I never necessarily expected to. I don’t know whether my pain relief is really due to the elimination diet itself, whether I have specific food intolerances other than to gluten and yeast, or even whether I have an autoimmune disease.

I have been waiting for over a year to be referred to a specialist by my General Practitioner and since finally getting a referral from the doctor at the Family Planning Clinic (I was having my contraceptive implant removed), I have been waiting a further five weeks to hear about an appointment from the urologist with nothing so far. This of course means that I have never had a diagnosis for Interstitial Cystitis and was running with my own research.

I labelled myself as having Interstitial Cystitis (or Painful Bladder Syndrome) for a number of reasons: 1. I have had a number of antibiotics prescriptions, none of which have successfully got rid of the pain; 2. Not all of my urine tests have been positive for bacterial infections; 3. the symptoms matched up, including the increased pain as the day went on and especially in the late evening just before bed; 4. I literally didn’t have one single day without pain in over a year; 5. It is notoriously difficult to get a diagnosis for Interstitial Cystitis.

In the summer, my doctor did a urine test for bacterial infections and I tested positive. I was prescribed Nitrofurantain, but after a day and a half, I felt as though I was getting pains in my arm, chest and stomach. So I told my doctor I was only interested in diagnostics from now on and didn’t want any more antibiotics for fear they were suppressing my immune system and making me sicker and more resistant in the long-run.

I was convinced that if I had an infection, it was on top of the Interstitial Cystitis, probably caused in part by the constant irritation in my bladder. I started looking up alternative treatments for bladder infections and bought a load of D-Mannose. My symptoms improved a lot and I went back down to a very low level, but still chronic pain.

I kept the rest of the Nitrofurantain though. I don’t know why. Probably because I’d paid for the prescription and I don’t like wasting stuff I’ve bought. I really don’t know. But anyway, I started on this Autoimmune Protocol (AIP) diet 46 days ago and saw my symptoms improve again significantly, sometimes going entire days with minimal pain until the evening.

Then a couple of weeks ago after having a couple of days of barely any pain whatsoever, I got a huge flare. After a couple of days of intense pain, I assumed I had got another bladder infection again on top of the Interstitial Cystitis. I tried the D-Mannose again, but it only works against E-Coli bacteria. After a few days, I figured why not take the antibiotics just to see. My symptoms improved dramatically. Within two days I had barely any pain again. I finished the antibiotics on Saturday, by Monday I was pain free completely and still am today three days later.

So, now there are several possibilities:

  • I was close to being in remission before I got the most recent bacterial infection. The antibiotics got rid of the infection, but the Interstitial Cystitis was already going into remission and the timings just happened to coincide, confusing things.
  • I only ever had a bacterial infection and I was just being stupid and stubborn and should have just done what my doctor told me.
  • I have had a series of infections and the reason why I couldn’t cure them with antibiotics was because my diet wasn’t clean enough to get rid of them and keep them from coming back.

I don’t know if I’m missing other possibilities. But I think the most likely scenario is the last one. It’s just too much of a coincidence that my pain went away just as I finished a course of antibiotics for me to have Interstitial Cystitis now in remission. Either way, the infections I had were extremely recurrent and very persistent and despite several rounds of antibiotics were not planning on going away without alterations to my diet and lifestyle.

I guess I’m also hoping that it’s the latter because the former would mean that I do have Interstitial Cystitis (or cancer), which would be a much more negative outcome than a simple infection, however persistent. I am still planning on following up with the hospital on where they have got to with my appointment and fully intend to see a specialist and get all the diagnostic tests I can, because I would like to know once and for all if there is any damage to my bladder and any other potential causes for my persistent infections.

If it is just an infection, I still don’t regret taking this challenge and doing this elimination diet. I have learned a lot about myself and about my health and I still believe it was a contributing factor to me getting rid of the pain in the end. Also, it’s made Boyfriend see Paleo as much less restrictive now he’s had to cook AIP for six weeks! And for myself, the challenge has been interesting and I don’t think it’s the last lifestyle challenge I’ll do.

But it’s not over yet. I still have two weeks left of this challenge, but the focus now will be on reintroducing foods. I’m going to reintroduce a little bit quicker than is recommended, but still fairly strictly just in case I do notice a reaction to anything. There’s still the possibility that I have an intolerance to something after all.

Thanks always for coming with me on this journey. It feels wonderful to be pain free.


Food diary
Breakfast: Smoothie (banana, cherries, coconut milk, juice of half an orange, dried ginger)
Lunch: Sausage, bacon, fried mushroom, sweet potatoes
Dinner: Tuna, scallops, leek and spring onions
Snacks: Macadamias, cashews, walnuts, dates, 1 dried fig. Just small amounts of each.

Pain level
Zero

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4 thoughts on “Day 46: The dangers of self-diagnosis

  1. I have enjoyed every one of your posts and can really, really relate to your situation. I have been on a similar roller coaster trying to eliminate health issues for a few years now. The biggest step forward was accepting I could no longer have wheat. While my health greatly improved, I still had skin issues with dryness, breakouts, eczema and infections. I moved from a Paleo diet to more of an AIP diet, though not strict about it. This lead me to the discovery that a Candida overgrowth was involved. Some foods on the Paleo and AIP diet (Kombucha, fermented foods) encourage Candida growth. As chronic Candida overgrowth is shown to lead to cancer, I realized this issue needed to be addressed aggressively. Currently I am being much more strict about my diet and have included baking soda (bicarbonate of soda) and lemon juice to my daily routine. Lots of data is available to support it’s effectiveness in encouraging healing from cancer and any digestive issue. Check out Earth Clinic and this link:
    http://fitlife.tv/stage-4-cancer-gone-with-baking-soda-treatment/

    I think you’re on the right track and making all the right moves. You’re listening to your intuition and reading your body’s signals. Exactly what is needed. I really admire you for blogging about this very serious life challenge. Energetic support sent your way!

    Liked by 1 person

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