Conditions, IC Stories, Interstitial Cystitis

How I Healed from Interstitial Cystitis

In this post I’d like to get a bit more personal rather than practical. I would like to talk about how I healed from interstitial cystitis.

Contrary to common belief, I have experienced on myself that it is possible to recover from this condition. I believe that this is possible for each of us but that the journey might be a different one.





Why?

Because the body always tries to heal…When we have a wound, it heals. If we get an infection we get a fever and combat it.

We just need to let the body do its job.

How I got interstitial cystitis

Chronic disease is usually multi-factorial and therefore there probably is no one trigger, but multiple ones.

I have always been prone to bladder problems and so has my mother and relatives on her side of the family.

My earlier experiences consisted of bladder infections and sometimes overactive bladder (especially when I got cold).

Later, this turned into full blown urinary tract infections that also affected my kidneys.

I also suffered from IBS for most of my life, although I was never aware of it.

Then, a few things happened in my life: I went through an extremely stressful period that included graduating from uni and a break-up and I lived in a cold and mouldy house and my immune system was suffering.

When I went on a holiday to Switzerland, where it was extremely cold, I got another bladder infection. I couldn’t be bothered to go to the doctor over there and left it untreated.

The infection travelled up to my kidneys.

A circle of antibiotics and recurrent infections began.

After a few courses of antibiotics, the bladder pain and the frequency started to be present constantly. Thinking it might be a ‘rest infection’ I took another course of antibiotics.

That’s when my interstitial cystitis and IBS really kicked off.

A stony path to healing

I have been raised by a mother who always favoured natural remedies over orthodox medication so I was reluctant to follow the orthodox path. I had also not gotten much help from the doctors I visited and felt thoroughly let down.

Additionally, I was not prepared to live a life in chronic pain. I could not imagine myself being someone who has a chronic disease!

It was starting to really get in the way of my life and relationships.

Therefore, I started looking for answers.

I came across candida and the raw vegan diet. Having already been a vegetarian for most of my life, the switch seemed to make sense. I started juicing and eating superfoods. I took natural antifungals to ‘kill off’ the candida I thought I had. I cut out sugar and processed foods.

6 months later, my bladder still hurt and my gut was on fire. I had extreme food intolerances and every bit of sugar or starch made my bladder flare up. I was cold all the time.

All the while, I kept researching.

Recovery from interstitial cystitis

Things finally started to get better when I learned about the gut microbiota and probiotics. I started eating fermented foods and felt better. But the pain was still there.

Two books then changed my approach completely: Nourishing Traditions and The Gut and Psychology Syndrome. I learned how animal foods contain nutrients important for gut and bladder wall integrity and hormone health. I learned how the gut microbiota can make or break our health and how antibiotics kill these bacteria. I realized I had many of the symptoms associated with poor gut health and nutrient deficiencies.

I decided that I needed to put animal foods back into my diet. When I first started to eat eggs again, I could not get enough of them. My body was craving them so much, I couldn’t think of anything else. My body was clearly telling me something!

I started consuming bone broth and a few months later I ate meat for the first time in over twenty years.

Then I went on the GAPS diet to heal my gut.

After 6 months on the GAPS diet my interstitial cystitis was gone!

Steps I took that helped me recover from interstitial cystitis

  • I cut out sugar, processed foods, grains, dairy (apart from fermented dairy), soy and hydrogenated oils
  • I consumed nutrient dense natural animal and plant foods
  • I only consumed organic vegetables and grass-fed/free range meats
  • I consumed probiotic rich fermented foods
  • I consumed glycine rich bone broth and gelatine that contain nutrients needed for gut and bladder wall repair
  • I consumed healthy fats including butter, ghee and coconut oil and upped my omega 3 intake from cod liver oil
  • I removed foods I was intolerant to
  • I removed toxic cleaning products and personal care full of chemicals and switched to natural products
  • I removed plastics
  • I spent time outside

Conclusion

Although my case is only anecdotal evidence, the steps I took to finally recover all have evidence behind them.

I finally healed because I let my body heal. I removed things that stood in the way of healing and added things that supported healing.

Today I follow a paleo type of diet and I am healthier and stronger than I have ever been.

My interstitial cystitis only flares up very occasionally and briefly (usually if I’ve eaten something that doesn’t agree with me or if I’m extremely stressed).

I believe that the steps I took can help anyone to feel better and that chronic disease does not have to be a sentence for life.

Making changes is not easy – but neither is being in pain!

Now I’d like to hear from you. Are you suffering from interstitial cystitis? Have you made changes and felt better, or have you recovered fully? Let me know in the comments!

Update: For those of you who want to know more about my experience with the GAPS diet please read ‘My Year on the GAPS diet’.



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How I Healed from Interstitial Cystitis | Bladder-Help.com

29 Comments

  • Reply

    Rosie

    June 27, 2017

    Hi Layla.

    I really love your page – I have recently discovered this link between leaky gut/bladder and IC and want to start a diet. However I am seeing some cross overs that seem to contradict – ie. I know that soya is a huge flare for my IC however the diet says that we need to consume more fermented products? when you set out on this diet did you experience flare ups and just hope for it to be worth it? any advise would be greatly appreciated!

    • Reply

      Layla

      June 27, 2017

      Hi Rosie, thank you! What kind of diet are you looking to go on? I experienced a lot of flare ups when I went on a raw vegan diet. Once I introduced animal foods again and went on the GAPS diet nothing got worse (the pain was constant anyways) and after 6 months the pain slowly went away. I’d be wary of soya as it is quite an inflammatory food and an allergic trigger for many people. Fermented foods, though generally beneficial because they contain friendly bacteria in their raw state, can be an issue as many IC sufferers have raised mast cells/histamine and fermented foods contain histamine, which may exacerbate symptoms. Fermented products don’t have to be soy either, sauerkraut would probably be a better choice (though if you do want to eat soy, have a fermented form as it’s more beneficial). Healing can make us feel worse first (i.e. produce herxheimer reactions) but the way to gauge if a diet is working would be that after a short period of feeling worse you start feeling better (this may move up and down a bit).

      • Reply

        Roy A Wagner

        November 6, 2017

        In the USA, I believe that most Soy Beans (which I believe to be what you are calling “soya”, are GMO’ed to be resistant to Monsanto’s RoundUp which is Glyphosate. This is the bad stuff that we had to get rid of in order for my wife, Kathleen, to get over IC. The rest of the story is in the earlier story on Layla’s blog.
        We still use the bone broth, the Sauerkraut, the Organic produce from our Garden, etc. Still also using the Epsom Salt Baths. // Roy 6-November-2017

        • Reply

          Layla

          November 6, 2017

          Thanks for sharing! Yes, I believe it’s hard to find non-GMO soy beans anywhere really, even organic ones could be contaminated (or so I’ve heard). Soya is a difficult food anyways, I would not necessarily recommend it in any case because of high anti-nutrient content.

  • Reply

    createinhimalways

    July 30, 2017

    Layla, thank you so much for your great information. Do you remember if your IC became much worse when you began your protocol? I did fodmaps for a month and then moved into the GAPS right after that and have been following it for a month. The IC is worse than usual though at this point. I am feeling discouraged. Any advice/encouragement?

    Thank you, Angie

    • Reply

      Layla

      July 31, 2017

      Hi Angie, I don’t remember the IC getting worse at that point but I had some other ‘healing symptoms’ for a while such as skin rashes and a cough. Before, when I did raw/vegan/juicing my IC got worse an that was not a healing effect it was in fact just getting worse from that diet.
      There can be some initial worsening of symptoms (potentially due to unfriendly bacteria dying off) but this should get better after a couple of weeks. If it keeps getting worse, the diet isn’t working for you – in this case don’t think you need to try harder but try something else (like AIP). Also ask yourself if sticking to the diet is causing you a lot of stress, as stress can be a massive flare for IC.

  • Reply

    Mary

    September 27, 2017

    Hi. I recently finished two rounds of antibiotics for a UTI. First was Macrobid, second was 10 days of Keflex. Nothing was ever cultured (longer story) A month or so after finishing I thought I was getting another UTI. I had bladder pressure and had to pee every 20 minutes. Dr tested urine( yesterday) and it was negative for bacteria. (I had been taking a probiotic that was specifically for bladder health)
    Anyway, I’m still having the pressure and urgency but without pain or burning when I do pee. I’m seeing a urologist tomorrow because I’m wondering if it could be IC. How is this diagnosed? They will probably suggest medication? I’m also suffering from a bout of depression and anxiety and this is certainly not helping. Feeling a bit overwhelmed at this time!:(

    • Reply

      Layla

      September 27, 2017

      An IC diagnosis is usually one of exclusion, i.e. when no infection can be found. However, testing methods are outdated and it has been shown that in many cases an infection is present although nothing had showed up in the culture. I wrote a blog post about this in the past. Are you in the US?

    • Reply

      Paula

      October 24, 2017

      I had pressure to pee on and off for 3 months and it wasnt constant. I would pee, and pressure would go away after an hour or so. Then I ate spicy food for dinner and I ended up at urgent care, achy, nauseaus, fevery, fatigued, no appetite, severe bladder pain, urgency on and off… I opted to not do the invasive test but have learned that my symptoms improve with no gluten and no irritating foods, still learning what those are. Its been 2 weeks, but sunday and monday were hood days, today I’m a little inflammed, one day at a time… I am thinking GAPS is best to start, when I’ve tried a couple AIP recipes, still have irritation.
      I am choosing to see the good in this, giving thanks to the Lord, knowing He WILL bring good out of this, and YES! Our bodies were created to be whole and healed, to heal itself, but we weren’t created to ingest GMO’s, chemicals, hormones, etc. Blessings and healing to each of you on your journey.

      • Reply

        Layla

        October 25, 2017

        The GAPS intro diet can be quite soothing so it’s certainly something to try if you had no success on AIP (I struggled with starches at the time, which are allowed on AIP). However, success is not always instant.

  • Reply

    Chrissy

    October 10, 2017

    Hi Layla,
    I’ve had a similar experience where experimenting with raw vegan and juicing caused me more pain and now I’m on the paleo gut healing band wagon. I’m just wondering if you made a point of eating cooked veggies instead of raw veggies once you went paleo? Also did you take any probiotic supplements or did you just eat fermented veggies and dairy for your probiotics?

    Do you still get any flare-ups now or do you think it’s possible to get the whole thing into complete remission?

    • Reply

      Layla

      October 10, 2017

      Interesting! Yes, I did – the GAPS protocol I was doing at the time really emphasized cooked veggies over raw as they are easier to digest and less abrasive to inflamed tissues…
      I did both fermented foods and probiotics but I have to say that some of the probiotics I tried caused me problems such as bloating and sometimes a weird burning sensation in my gut – not sure why! I overdid it a bit a the time as well, taking a couple of pills per day – probably not advisable.
      I never get bladder flares anymore, the last time I had one was after severe food poisoning but it cleared up pretty quickly. So yes, I would say it’s in complete remission and has been for about 3 years now.

      • Reply

        Chrissy

        October 11, 2017

        Hey Layla, Thanks for your reply. I actually worked with an integrative Dr for a while who put me on my current protocol which is basically paleo (I’ve added in the GAPS element with bone broth etc). When she works with patients she always starts them off on very small amounts of probiotics. I think that those of us with really leaky guts can’t handle the stronger probiotics when they pass through and irritate. I know I couldn’t have most probiotics without my bladder burning at first! She first started me on lactobaccilus only probiotics 3 x a day which were more gentle and then I slowly added 1/4, then half capsules of stronger strains like bifido bacterium as my body could handle them. So there you go!
        I’d say I’m now symptom free 85% of the time while I maintain good eating habits but working to achieve full remission! How long do you think you had to adhere to the diet before you reached remission?

        • Reply

          Layla

          October 11, 2017

          That is brilliant that you’re improving! Some probiotics are histamine forming which can be problematic in some people. It took me 6 months until the bladder pain eased and thena while longer until it fully stayed away.

  • Reply

    Lea

    October 11, 2017

    Hi! I’m currently following the paleo diet as well for a month now and eating more fermented foods like sauerkraut. However I was wondering if you think/did Kombucha? Or is that considered too alcoholic for us?
    Thanks!

    • Reply

      Layla

      October 11, 2017

      Hi, I did kombucha for a while and felt that it helped me a bit at the time. But later on it started giving me heartburn and a bit of a burning sensation so I stopped it. Theoretically, it could be a good way of getting good bacteria into the bladder, however it is also quite acidic and the alcohol may indeed be an issue. You’d have to try it for a week or so and see how it works for you personally.

  • Reply

    Krista

    October 15, 2017

    Hi Layla.
    Did you do the GAPS intro diet or the full diet or both? I started the GAPS intro diet last week and although I’ve had lots of detox symptoms my IC symptoms have improved.
    If you did the intro diet how long did you stay on that before moving to the full GAPS diet?
    And now that your IC is healed are you able to have acidic foods like coffee, kombucha or alcohol?

    Thank you so much for sharing your story and giving me hope.

    • Reply

      Layla

      October 15, 2017

      Hi Krista,
      Glad that your IC improved! I stayed on intro for nearly a year as I never did well on nuts or fruits and didn’t quite manage to move on. In hindsight, this was far too long because it’s quite a low carb/low calorie and low potassium diet – not really a good thing, especially for women. From my experience I’d try introducing root vegetables again as soon as you can rather than fruit (fruit seems to be a problem more often). I missed the point when I should’ve moved on and this wasn’t good for my metabolism and digestion. Some people might say you need to try harder if you’re starting to feel worse again but this might be a sign that you need to re-introduce some foods. This is different for everybody though, try to listen to your body.
      Acidic foods aren’t an issue for my bladder anymore luckily!

      • Reply

        Krista

        October 15, 2017

        Wow that’s amazing that you did it for a year! How long did you stay in each stage of the intro diet? Or how long would you recommend?
        I was hoping to move through the 5 stages over the coarse of 3 months and then move onto the full GAPS diet.
        Would love to hear your thoughts.

        • Reply

          Layla

          October 17, 2017

          I kind of never managed to move on from about Stage 2. I think it’s individual but I wouldn’t recommend staying on intro for more than 3 months, so your current plan sounds about right. I generally find the autoimmune paleo diet better designed and in hindsight would recommend it over GAPS – as I said I ran into some problems by being too restricted/low carb and generally the foods allowed on AIP are better tolerated than some of the foods re-introduced on GAPS (fruits and nuts versus root vegetables). This is something to bear in mind if you start getting worse and/or can’t move on to the next stages.

          • Krista

            October 17, 2017

            Thank you so much for your insight! I’m going to look into transition to AIP over the next couple months

  • Reply

    Diana

    October 24, 2017

    Hi Layla,

    I too have had IC symptoms for over 7 months after eliminating a calcium oxalate kidney stone (6mm bugger), but I have yet to eliminate the possibility of infection since I read that standard tests miss about 50% of infections, esp those with rare or fastidious organisms. I think part of the challenge with IC is that people labeled with this syndrome quite likely have a variety of different causative factors for their seemingly identical symptoms. I was wondering if you could share a bit more about your symptoms and if you ruled out the possibility of infection (by testing for mycoplasma/ureaplasma, by broth culture or the DNA testing available in the US).

    I have had digestive issues since my childhood but they got worse in my mid-30s and I have had frequency/urgency since my 20s although no “classic” infection symptoms (burning, fever, nausea). The frequency got much worse for me with the stone and the pain and burning settled in about a month after eliminating the stone. I am looking into the possibility of treating this with diet, and I came across GAPS and AIP as options. and I would appreciate some comments on your experience:

    1. When were you able to introduce fermented veggies and/or probiotics without flaring your bladder? Could I use probiotics rather than fermented veggies, which flare me, instead? Or is it better not to use anything? I think I flare from anything fermented (a spoon of yoghurt burned my bladder so I didn;t dare try anything more adventurous. In addition, I have tried the well-known therapeutic dose probiotic (with about 450 billion counts) before IC for my IBS-D (or SIBO or whatever gut issues I have) and I felt bloated beyond belief. I had to give up. This time I started slowly with Sacharomyces boulardi, which I seem to tolerate well (although not sure if it does anything), and two strains of lactobacilus that seemingly do not stimulate histamine. They did upset my bladder somewhat, but I can generally tolerate them.

    2. How do you keep stage one of the Intro Gaps diet with a regular job or even some travel? I can’t imagine carrying broth around. I already cook and carry all my food with me to work, but I never attempted liquids.

    3. How do you avoid getting hungry? And what do you snack on? I didn’t use to be a big snacker, but I had plenty of complex carbs (muesli, oats, brown rice, whole wheat) with my main meals and I’d indulge in an afternoon piece of chocolate (gone are the days, alas!) I feel that I’d go hungry (and bored to death) with only meat and veggie soups. Any tricks other than telling myself this is all so I can get better?

    4. What’s your view on combining meds and supplements with GAPS diet? In addition to probiotics, I take 1000mg of non-citrus quercetin a day, a vitamin D3 (I currently like in the UK so not much sun) and plan to add omega-3. As for meds, I have been on an antiacid for 3 years (I know it’s bad but it’s the only thing that helped my burning gut sensation when this happened years ago. Now I managed to reduce the dose to 12 mg, but can’t seem to be able to get off of it without my gut going into panic mode. When I do, I get stomach upset and the burning sensations.) I also take a 2mg dose of Cyclobenzaprine to help with sleep (it also calms my gut, and makes me think my problem is that food moves too fast through my gut), 300mg of Gabapentin for the bladder pain (just numbs it somewhat) and solifenacin for overactive bladder to help with frequency.

    Sorry for the many questions! I am a bit overwhelmed and not sure how to best approach this.

    • Reply

      Layla

      October 25, 2017

      Hi Diana,
      No, I never got tested and I didn’t know many of the things I know now back then. But my bladder symptoms improved anyways. I started with chronic UTIs, especially after intercourse, which often turned into kidney infections. Then after many courses of antibiotics the stinging pain and urgency just never went away again – I had to go often and usually very little came out, plus the stinging got worse whenever I ate sugar or starch. I also had a lot of bloating and belly aches – IBS.
      I think some kind of bacterial imbalance is probably always present with these issues, so restoring balance is important but can be done without testing if this isn’t available. To answer your other questions:
      1) This is often due to mast cells and histamine intolerance. High dose Vitamin C (buffered) may help bring this down. I never had much success with probiotics myself but I could tolerate probiotic foods. You can try a D-lactate free probiotic, soil based organisms or mutaflor (a beneficial e.coli strain). I’d recommend not overdoing dosages, testing one at a time and see how you feel. Prebiotics are generally better to help grow the good bugs but you may not tolerate them at this point.
      2) GAPS is hard when working/travelling. I used to take a thermos or mason jars if I had the chance to heat food up. Boiled eggs were also a staple.
      3) I didn’t feel hungry much when I was on GAPS but I’d certainly have that problem now. Generally eating less carbs should help keep blood sugar more stable so you get hungry less but it is hard to get enough calories on this diet. Reducing liquids and increasing veggies and meats may help or adding more good fats. Don’t stay on it for too long, just set yourself a time and then start introducing new foods.
      4) Regarding meds I cannot advice you for legal reasons, work with your doctor on this. The only thing I can say that antacids lower stomach acid, which is needed to digest protein (I will upload an article on this soon). The stomach lining may become thinner, so when you stop antacids it burns. Antacids are not supposed to be recommended long-term. Ideally you’d work with a practitioner to come out of this vicious cycle. Meds can be a clutch sometimes so I’d always talk to your doctor first. I am not a massive fan of oral Vitamin D as this can drive calcium too high, this would be better from vitamin D lamps or sunlight. For omega 3 you can eat 2-3 servings oily fish per week. Quercetin may help with the histamine issue.
      Hope that helps!

  • Reply

    Paula

    October 24, 2017

    BTW Layla, THANK YOU! for responding to every comment. It’s challenging when I read other blogs and I have the same questions but the writer doesnt always respond… I know life gets busy so grace there but just letting you know its appreciated.

  • Reply

    Diana

    October 27, 2017

    Thanks a lot, Layla! I’ll go see a naturopath my friends recommended. Maybe she can straighten me out. I hate taking the antacid.

  • Reply

    Julie

    November 4, 2017

    Hi Layla-
    Thank you so much for this post!
    I have only had a couple UTIs in my life but over the summer I started a birth control pill to try and help my endometriosis pain until I was able to get deep excision surgery by a specialist. 2 weeks into being on the pill I started to get UTI symptoms. I went to my gyn and he gave me Macrobid for 7 days even though my urine analysis was negative. Nothing cleared up and since then I’ve been to 2 Urologists who felt that it was the pill causing my hormones to not be balanced and therefore causing me this pain and constant need to urinate as well as the possibility that there was endo in my bladdder. I just had my excision surgery October 12 and 1 week post op I felt great and didn’t have that pressure feeling on my bladder or need to constantly urinate. Unfortunately I then started feeling cramps, lower back aches and that bladder pressure and constant need to pee was back. I was treated with Cipro for 3 days and another urine analysis was done – everything negative. Now I’m 3 weeks post op and also have been doing an anti-inflammatory diet since the day of my surgery but am finding no relief. Should I go forward with a cystoscopy? I’m so uncomfortable and I peeing all the time but it’s not just a little – it’s a “normal” pee. I don’t know how that’s even possible. My surgeon said to see a Urologist again but I really don’t want another procedure done however I’m feeling so desperate.

    • Reply

      Layla

      November 5, 2017

      Hi Julie, really sorry to hear you’re struggling. Unfortunately it’s not uncommon for symptoms to still remain after a cystoscopy – I can’t advice you on medical procedures as I’m not a doctor. The pill can change the pH in the uro-genital area, thus affecting the bacterial balance, plus it can deplete nutrients that are important for fighting off infections, such as Vitamin C. Antibiotics can also kill the ‘good’ bacteria and may worsen things (I have a post on this), plus there’s a theory that bactericidal Antibiotics (macrobid), which kill bacteria by rupturing their cell wall, could potentially damage our own cells in the bladder. If I was in your situation I would see a functional medicine doctor (if possible) or a ND for a second opinion. What anti-inflammatory diet did you do? I’d suggest trying a ‘paleo’ type of diet and look into beneficial bacteria (I have a post on this also) for the uro-genital area to help restore bacterial balance. Nutrients to look into would be vitamin C (has antimicrobial activity and our body needs it in high amounts during infections) and magnesium (magnesium relaxes muscles, so a deficiency can play a role in bladder pressure and back aches). BTW a negative urine culture does not mean there’s no infection, these are outdated. If you can, test with MicroGenDX labs (genetic testing for bacteria).

  • Reply

    Jamie Hamilton

    November 7, 2017

    Layla,

    I followed GAPS years ago for IBS. This year with an IC diagnosis and severe lasting pain I am revisiting GAPS for hopeful healing. Do you have a list of what you eat daily in your current paleo/GAPS diet? After the long intro phase…

    Thank you and happy healing

    • Reply

      Layla

      November 8, 2017

      Hi Jamie, I don’t think long-term GAPS intro is a good idea, use it as a short-term intervention – please see my newest post about my year on the GAPS diet and some problems it created. I am not following GAPS anymore but more of a paleo template: organic fruit and veg, grass-fed meats, fish, eggs, dried fruits, olive oil, coconut oil and butter, nuts, some fermented dairy, some legumes, sometimes rice, some white potatoes – I have trouble getting enough calories and therefore eat some foods that maybe aren’t ‘ideal’. I’d say vegetables are my staple and the rest are add-ons. I’ve gotten a bit lazy with the bone broth and fermented foods but still try to use them now and again. But you’ll have to figure out what works for you, just be aware that these restricted diets can be too low calorie and low-carb (especially for women) over the long term so if you’re feeling too fatigued and getting thyroid/hormonal issues, and/or sleep problems that’s a warning sign.

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