10 Root Causes of Bladder Pain with Endometriosis

1.    Endometriosis on the bladder - If you have endo lesions on the bladder or infiltrating the bladder, these will be causing scar tissue, inflammation and irritation to the surrounding area, especially during menstruation when this tissue begins to shed. This inflammation causes pain as the body attempts to alert us of a threat (endo), but as our immune system is unable to ‘clean up’ the endo, the body continues to inflame the area and continues to send pain signals.

2.    Chronic inflammation - Inflammation can spread from one area in the pelvis to another over time, especially if the immune system is unable to clean up whatever is causing the threat. If endo is causing inflammation elsewhere in the pelvis and has done for some time, the inflammation and pain can spread as the nerves and surrounding tissue begin to get involved in the ‘alarm’ process.

Inflammation can also come from an inflammatory diet such as a diet rich in trans fats, sugar, processed foods and meat, and alcohol. It can also come from chronic low-lying infections, like an undiagnosed or treatment resistant UTI. Additionally, it can stem from blood sugar dysregulation.

Finally, it can also come from your gut. 70%-80% of your immune system lives in and around the gut and if you have a problem like undetected allergies, SIBO, etc., these can lead to leaky gut. Leaky gut occurs when the tight junctions in between the cells of your gut wall begin to open up and allow small food particles and bacteria to pass through. Your immune system and blood stream are sitting just on the other side of your gut wall, and so the immune system attacks these new ‘invaders’ creating an inflammatory reaction, which spreads throughout the body via the blood stream. The toxins release from SIBO and bad bacteria in the gut, can also leak through the leaky gut wall and into the pelvic cavity, creating localised inflammation.

3.    Small intestine bacterial overgrowth - Interstitial cystitis or at least IC symptoms have long been associated with SIBO, especially hydrogen sulphide type SIBO. This will most likely be in part due to the inflammation caused by SIBO, the toxins previously mentioned entering the pelvic cavity and histamine intolerance, which is often caused as a result of SIBO. 

However, research has also recently found that some of the key bacteria behind hydrogen sulphide type SIBO are also the same bacteria responsible for chronic UTIS, including Citrobacter, klebsiella, proteus and e-coli. This means that certain UTI treatments may also be effective for H2S SIBO and is currently being explored!

4.    Pelvic Floor Dysfunction - Your pelvic floor is like a complex bowl of nerves and muscles, which holds the bladder, vagina/uterus and colon. These nerves and muscles help to control bladder function and sensitivity.

Chronic pain, straining, tensing and pushing can cause the muscles to tighten and lock and the nerves to become hypersensitive This can cause sensitivity, pain and bladder dysfunction over time. 

5.    Histamines and oxalate sensitivity - Oxalates are a natural compound found in food. If we’re consuming too many oxalates or our body has trouble breaking them down, we may end up with crystal like particles in our bladder, which can of course cause irritation. 

Histamines can also be a problem. Research has shown that some patients with IC have higher levels of mast cells (the cells that release histamines) and histamines in the bladder, and we also know that endometriosis lesions contain higher levels of mast cells too. Additionally, we may have trouble breaking down and clearing histamines if our gut is compromised. We may also be making more histamines if we have excess oestrogen as oestrogen triggers the production of histamines, and a condition called Mast Cell Activation Syndrome also causes mast cells to be over-sensitive and produce too much histamine as well. 

Having too much histamine in our body can result in bladder pain, as well as symptoms like nausea, dizziness, rushing heart, racing heart, vomiting and bloating to name a few.

6.    Upregulated nervous system - Your brain’s primary function is to keep you safe and alive - it’s constantly looking for threats, which are communicated to us via our nerves. The body has a scale that measures the threat level and whether it’s worth sending a signal to the brain and if that threshold is met, a distress signal is sent out and the body responds with pain and inflammation to alert us to a problem and to heal the area. 

If the wound heals, the brain can calm down, but if it doesn't, as is the case with endo, the nervous system begins a feedback loop of distress, pain and inflammation, which tells the brain things are unsafe, worsening the brains reaction. This can occur if there is endo on or near the bladder.

Over time, the brain will actually decrease the body’s natural pain-relieving hormones because it wants us to stay alert as it feels so at threat, and so we begin to become even more sensitive to pain

Additionally, anything that puts the brain in flight or fight mode such as stress, fear, anxiety or rushing, will reinforce to the brain that you’re unsafe, and will further heighten the reactions.

In fact, research has shown that people with interstitial cystitis tend to have an upregulated nervous system. 

7.    Hunner’s lesions - Hunner's lesions are blisters or ulcers inside the bladder that occur in about 10% of people with interstitial cystitis and are of course aggravated by food, drink and other substances. They can be diagnosed with a cystoscopy and can be removed, but often return within a year and though relief is reportedly high, it’s temporary and worth considering whether scarring could occur afterwards.

8.    Biofilms - Biofilms are when a colony of bacteria, viruses and other pathogens get together to form a network, and then hide themselves under a mucosal type lining that protects them from the immune system and antibiotics. They tend to cling to bladder walls and will resist treatment and not show up in standard UTI testing. Specialist testing and the use of anti-biofilms can be effective in treating and eradicating them.

9.    Adhesions - Adhesions are web like scar tissue structures, made up of collagen, which do not show up in scans. Adhesions occur in response to surgery, trauma or wounds and are the body’s natural attempt to ‘knit’ an area back together. 

However, adhesions often don’t stop with the wound, and begin to knit towards other scars, organs and surfaces, locking organs together and creating a ‘frozen’ pelvis. In endo, adhesions can grow as a result of surgery and of the lesions themselves. They can pull on the bladder and prevent it from functioning properly, from filling to full capacity and can heighten pain and sensitivity. Adhesions are VERY strong. 

10. Chronic UTIs - Due to antibiotic resistance or perhaps the use of the incorrect antibiotics, some UTIs can evade treatment and can burrow into the lining of the bladder to protect themselves, which prevents them from being destroyed by any further treatment. As the bladder wall sheds, bacteria can then move to the surface of the bladder wall again and cause irritation once more - this may be why your UTI symptoms come and go. 

Standard tests only identify a small number of UTI bacteria and can also be inaccurate. You can ask for more extensive tests or go private for specialist testing that can help identify chronic UTIs. 

Have a listen of the full episode to hear more and to learn the methods of identifying these root causes and scroll down for references.

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This episode is sponsored by my free guide ‘A Natural Pain Relief Tool Kit for Endometriosis’. This four page guide includes evidence based and effective remedies which you can use at home to reduce your pain with endo. Download your copy here.

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If you feel like you need more support with managing endometriosis, you can join Your EndoLife Coaching Programme. A 1-to-1 three month health and life coaching programme to help you thrive with endometriosis. To find out more about the programme and to discuss whether it could be right for you, email me at [email protected] or visit my website.

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Show Notes

Endo on the bladder

Six Tips for Reducing Endometriosis Pain in The Week Before Your Period

Inflammation

Outsmart Endometriosis: The Elimination 'Undiet' for Endometriosis with Dr Jessica Drummond

Antioxidants for Endometriosis

Anti-inflammatory Living for Endometriosis

SIBO

Understanding The Endometriosis Belly, Part 3: SIBO Symptoms

The SIBO, Endometriosis and Interstitial Cystitis Connection wth Dr. Allison Siebecker

How To Treat SIBO with Dr Allison Siebecker

How to Test for SIBO

Pelvic Floor Dysfunction

Equal Treatment for Black Endometriosis Patients and Pelvic Floor Physiotherapy for Painful Sex, Interstitial Cystitis and Endometriosis with Dr. Juan Michelle Martin

Your Brain on Pain - How Your Nervous System Affects Interstitial Cystitis and Endo Pain with Dr. Nicole Cozean

Pelvic Floor Therapy for Endometriosis with Heba Shaheed of The Pelvic Expert

Histamines and oxalates

Nutrition for Bladder Pain and Endometriosis with Brianne Thornton, MS, RD of IC Wellness

Endometriosis, SIBO, Interstitial Cystitis and Allergies: The Histamine Connection

The Association Between Endometriosis and Allergies

Diet and Natural Treatment Options for Interstitial Cystitis and Bladder Pain with Elisabeth Yaotani of IC Wellness

Interstitial Cystitis and the Histamine Connection

Upregulated Nervous System

Your Brain on Pain - How Your Nervous System Affects Interstitial Cystitis and Endo Pain with Dr. Nicole Cozean

Taking An Integrative Approach to Endometriosis with Jessica Drummond of The IWHI

Anti-inflammatory Living for Endometriosis

Hunner’s Lesions

Hunner's Ulcers - Interstitial Cystitis Association

Biofilms

Are Biofilms the Root Cause of Your Interstitial Cystitis? With Dr. Deanna Berman, ND, LM

Biofilms: Another Potential Contributor to Interstitial Cystitis

Biofilm Disruptors - do not take without consulting a practitioner first!

Adhesions

The Healthy Gut Podcast Ep.25: Adhesions And SIBO With Larry And Belinda Wurn

The Healthy Gut Podcast Ep.33: Visceral Mobilisation With Alyssa Tait

The Period Party Podcast: Mercier Therapy for Pelvic Related Conditions with Dr. Jennifer Mercier

The Best Surgery for Endometriosis with Dr. Andrew Cook

Chronic UTIs

Interstitial Cystitis Treatment With Ruth Kriz

Treating Chronic UTI's with Rochelle Stern