EP.399/ How SIBO and IBS Could Be the Root Cause of Your Interstitial Cystitis
Today I want to talk briefly about the possible connection between endo, SIBO, IBS and UTIs. Now this could be a deep dive episode but I am giving you some of the top lines and the most recent research, and I’ve put a few links to more detailed episodes in the show notes.
People with endo have a 16x higher odds of also having interstitial cystitis and 6x higher odds of also have an overactive bladder.(1)
We also have research suggesting up to 90% of those with endo may also have SIBO(2) - and SIBO is linked with IC, with one study showing 81% of IC patients who also had IBS symptoms, tested positive for SIBO.(3)
To further confirm this connection, having IBS has also been shown to significantly increase the risk of IC development,(4) and the latest research suggests that the majority of IBS (about 60-70%) is caused by SIBO.(5)
So, what could be behind this connection?
Well, two most common UTI causing bacteria are e.coli and klebsiella,(6) which also happen to be the leading hydrogen producers in SIBO (7) and two of the bacteria shown to be high in people with endo.(8)
Now, whilst an IC diagnosis excludes the presence of acute infections, some theories suggest that one cause is chronic embedded UTIs, hiding in biofilms.(9) Biofilms are like mucosal barriers that hide and protect bacterial colonies, and help them evade detection and treatment.
Additionally, research has also shown IC patients have microbiome dysbiosis both in the bladder but also in the gut.(10)
One of the main ways that UTIs form in women is spreading after bowel movements into the urethra,(11) so it’s possible that higher levels of hydrogen SIBO, and as a result, E.coli and/or Klebsiella may be contributing to UTI risk through bowel movements, we just don’t yet have the research to confirm this.
Finally, SIBO researchers believe that SIBO could contribute to IC by increasing immune activation through LPS(12). Now, if you haven’t heard my episode on LPS, LPS are toxins that break off gram negative bacteria like e.coli and klebsiella, and trigger an inflammatory immune reaction in the body.(13) SIBO increases levels of LPS, and also increases their chances of escaping through the gut barrier into the rest of the body,(14) and people with endo have higher levels of LPS in the pelvic cavity, which contribute to disease development.(15) So, what’s this got to do with IC? IC have higher levels of mast cells in the bladder, and mast cells are activated by LPS, and stimulate nerve sensitivity creating pain.(16) So if bacteria are getting to the bladder via infections, these will release LPS, which will start to up-regulate pain through mast cells.
Now, these are not the only causes of interstitial cystitis, there are many factors involved, especially ones that are linked back to endo, like pelvic floor dysfunction, but I think the connection between SIBO, IBS, endo and IC is worth considering and exploring for those of us with all or most of these conditions, because it’s possible that by addressing both your SIBO and hidden bladder infections, you could improve your IC pain.
Now, if you’d like help with your endo belly, I am looking for 5-10 people who would like help with their endo belly and suspect SIBO (there are about four spaces left).
After the success of using probiotics for SIBO in endo clients these past nine months, and the recent practitioner training I ran on endo and SIBO, where I presented the latest research and my experience with endo+SIBO clients over the past several years, I would LOVE to now take this further to a larger group of endo peeps to begin gathering more data on the impact of SIBO on endo, and how addressing it affects IBS symptoms, endo symptoms and endo belly.
I am particularly keen to work with anyone interested in trying the probiotic protocols I’ve been testing, as this is where we have the least data and yet are seeing good success rates, BUT I’m also happy to work with anyone who would like to explore other avenues i.e. elemental diet, herbs, etc.
To keep this affordable and also to help manage my caseload, the programme will consist of three one to one sessions, delivered over six months (nine months if needed, some cases require longer), with email support in between (in contrast to my usual coaching, which is 12 sessions). SIBO is tough to treat, so there will of course be room for extension if required.
Prior to starting, we’ll order you a SIBO test and go over your symptom history to help me identify any SIBO co-conditions or root causes we need to address.
Then we will meet for two initial sessions to get started, covering:
Test results
Protocol options and creating a plan (including retesting)
Dietary options
Die off preparation and management
Symptom management
You’ll then be able to move forward with the protocol, with email check ins and support from me.
The third session will cover prevention of relapse and microbiome rebuilding, or chronic SIBO management if you have a root cause that causes continual relapse i.e. hEDS. It’ll be booked in based on when you’re near completion of the protocol.
In return for the discounted price (which I’ll share in just a moment), I’d love to use your experience to gather information on which protocols were most helpful, which management strategies you responded best to, SIBO success rates, impact on endo, etc. I won’t be sharing any personal information like names, etc. It’ll simply be quantitative data (maybe some qualitative if there’s any quotes that you’re happy to share).
My hope is that I can use this info to learn more about the endo + SIBO connection, develop better and more effective protocols and eventually present all of this in an accessible course or book, that’s budget friendly for everyone.
Because this is a condensed version of my usual work, we won’t be directly targeting/discussing endo, but I will take into account your endo history and symptoms, and this will all be considered in the SIBO protocols, and they will be tailored to support your endo symptoms i.e. certain prokinetics for SIBO can also treat endo pain, certain SIBO dietary changes have also been shown to help endo symptoms, etc. If you’d like one or more targeted endo sessions, they can be booked in, in addition.
Whilst I would love this to be free, I can’t work with that many people on two such tough conditions for no fee - it would simply take up so much time, I wouldn’t have enough spare time to earn a living! But the programme is significantly cheaper than my typical year long 1:1 coaching programme, at £600, with the option of 3-6 month payment plans if needed in £100 or £200 instalments.
If you’d like to learn more, email me on hello@thisendolife.com
References
1) https://pubmed.ncbi.nlm.nih.gov/39990556/
2) Relation of endometriosis and neuromuscular disease of the gastrointestinal tract: new insights - PubMed, https://pubmed.ncbi.nlm.nih.gov/39959963/
3) https://pubmed.ncbi.nlm.nih.gov/17932763/
4) https://pubmed.ncbi.nlm.nih.gov/33620539/
5) The relationship between small intestinal bacterial overgrowth and irritable bowel syndrome - PubMed, Normalization of lactulose breath testing correlates with symptom improvement in irritable bowel syndrome. a double-blind, randomized, placebo-controlled study - PubMed, The prevalence of overgrowth by aerobic bacteria in the small intestine by small bowel culture: relationship with irritable bowel syndrome - PubMed, Irritable bowel syndrome and small intestinal bacterial overgrowth: meaningful association or unnecessary hype - PubMed
6) Urinary Tract Infections Caused by Klebsiella pneumoniae and Prolonged Treatment with Trimethoprim/Sulfamethoxazole - PMC, Community-Acquired Urinary Tract Infection Among Sexually Active Women: Risk Factors, Bacterial Profile and Their Antimicrobial Susceptibility Patterns, Arba Minch, Southern Ethiopia - PMC
8) https://pmc.ncbi.nlm.nih.gov/articles/PMC12942269/, https://pmc.ncbi.nlm.nih.gov/articles/PMC8688745/
9) https://uqora.com/blogs/urinary-tract-infections/biofilms-recurrent-utis, https://uqora.com/blogs/urinary-tract-infections/recurrent-utis-as-a-possible-explanation-for-interstitial-cystitis?srsltid=AfmBOopcOWqZmW0gfhWvr8CdjxoyRLGpypeSfZ3GWlbbqi84mcqXHxys, https://liveutifree.com/interstitial-cystitis-treatment/, https://pubmed.ncbi.nlm.nih.gov/18538691/, https://www.nhs.uk/conditions/urinary-tract-infections-utis/
10) https://www.frontiersin.org/journals/cellular-and-infection-microbiology/articles/10.3389/fcimb.2021.711746/full, https://www.sciencedirect.com/science/article/pii/S2405456925000082#b0030
11) https://www.nhs.uk/conditions/urinary-tract-infections-utis/
12) https://pubmed.ncbi.nlm.nih.gov/17932763/
13) https://www.theendobellycoach.com/podcast/lipopolysaccharides-endo-pain-growth
14) https://pmc.ncbi.nlm.nih.gov/articles/PMC12030604/, https://www.frontiersin.org/journals/microbiology/articles/10.3389/fmicb.2024.1501596/full, https://pmc.ncbi.nlm.nih.gov/articles
15) https://www.frontiersin.org/journals/microbiology/articles/10.3389/fmicb.2024.1363455/full, Bacterial contamination hypothesis: a new concept in endometriosis - PMC, Evaluation of microecological therapy in endometriosis through modulation of the gut microbiota | European Journal of Medical Research
16) https://pubmed.ncbi.nlm.nih.gov/8284844/, https://link.springer.com/article/10.1007/s00192-025-06213-y
Podcasts
https://www.theendobellycoach.com/podcast/utis-endo
https://www.theendobellycoach.com/podcast/root-causes-of-bladder-pain-with-endometriosis
https://www.theendobellycoach.com/podcast/new-ic-subtypes
https://www.theendobellycoach.com/podcast/nutrition-bladder-pain-brianne-thornton
https://www.theendobellycoach.com/podcast/ic-sibo-endo-connection
Need more help or want to learn how to work with me?
Ways to work with me:
One to one coaching info and application - £500 off this July.
Endo Sessions: Single and mini-package one to one endo coaching
SIBO Sessions: Single and mini-package one to one SIBO coaching
Live and Thrive with Endo 2.0 DIY online course
Masterclasses in endo nutrition, surgery prep and recovery and pain relief
This EndoLife, It Starts with Breakfast digital cookbook
Affiliate Partnerships
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