How Endometriosis and Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) Are More Connected Than You Think
As an Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) and endometriosis warrior, I understand how difficult it is to live with these conditions. If you’re reading this, chances are you’re also navigating the challenges of one or both. Today, we’ll dive into the connection between these two chronic pelvic conditions… often referred to as the “evil twins of pelvic pain” (Very fitting topic as we head into October 🎃 ) and how understanding their relationship can lead to more effective care.
Over 80% of patients with Chronic Pelvic Pain were found to have both Endometriosis and Interstitial Cystitis/Bladder Pain Syndrome.
What is Endometriosis?
Endometriosis is a full-body inflammatory disease, not just a “bad period” or a “women’s issue.” It affects about 1 in 10 people assigned female at birth, and likely more. The disease occurs when tissue similar to the lining of the uterus grows outside the uterus, leading to chronic pain and inflammation. But it’s more than just the “uterine lining in the wrong place”—endometriosis is complex, often persistent even after menopause and can appear on various organs, including the bladder and even the lungs.
More Than Just Pelvic Pain
Endometriosis doesn’t just cause pelvic pain. It can affect almost any part of the body, making diagnosis and management difficult. Some patients have even reported lung collapse or coughing up blood when endometriosis lesions infiltrate their lungs. This broad spectrum of symptoms often makes it tricky to determine whether someone is suffering from endometriosis, IC/BPS, or both.
What is Interstitial Cystitis/Bladder Pain Syndrome?
Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) is a complex, chronic condition characterized by persistent pain, pressure, or discomfort that is perceived to be associated with the urinary bladder. Unlike typical bladder infections, IC/BPS symptoms last for more than six weeks and occur without the presence of any identifiable infection or other underlying causes. The pain can range from mild discomfort to severe, debilitating pain and may be experienced in the bladder, lower abdomen, or pelvic area. Alongside the pain, individuals with IC/BPS often experience lower urinary tract symptoms, such as increased urinary frequency, urgency and the need to urinate multiple times throughout the day and night. This condition significantly impacts the quality of life, making it challenging for those affected to engage in daily activities, work and social interactions.
The Evil Twin Connection: Endo + IC/BPS
Endometriosis and IC/BPS are notorious for hanging out together. In fact, studies reveal that over 80% of people with chronic pelvic pain (CPP) have both conditions. Endometriosis lesions on the urinary tract, bladder, and surrounding areas can mimic IC/BPS symptoms. Endo can involve the detrusor muscle, ureter, kidney and bladder epithelium, as well as nerve innervation of the uterosacral hypogastric plexus, sacrum s2, s3, s4, and also even thoracic spine at t10 t11, as all of these points have everything to do with bladder function. This makes diagnosis challenging, but the good news is that patients often see improvement in their bladder symptoms following expert endometriosis excision surgery.
The problem is that these conditions share so many symptoms—bladder irritation, pelvic pain and even bowel issues—that it’s often difficult to separate one from the other. This is particularly true when endometriosis tissue affects the bladder lining or the nerves that control the bladder, causing pain that mirrors IC/BPS symptoms.
The Role of Mast Cells and Nerve Sensitization
Both endometriosis and IC/BPS involve something called mast cell activation and neuroinflammation. Mast cells, which are involved in allergic reactions and immune responses, can go haywire, leading to heightened pain sensitivity. This process, called “central sensitization,” means your body becomes hyper-reactive to pain stimuli, making even minor triggers feel excruciating.
With both conditions, nerve inflammation and dysfunction also play a role in worsening the pain. This is why endometriosis can make IC/BPS flare-ups worse and vice versa. They feed off each other, creating a cycle of ongoing discomfort.
Diagnosing and Treating Endometriosis and IC/BPS
When it comes to diagnosing endometriosis, excision surgery (performed by a specialist trained in recognizing and removing endometrial tissue) is the gold standard. This involves cutting out the endometriosis tissue, rather than just burning it off (which is known as ablation and leaves deep-rooted lesions intact) . For people with both endometriosis and IC/BPS, excision surgery can significantly reduce bladder-related symptoms, especially if the bladder is involved.
However, surgery alone may not be enough to address IC/BPS. A multidisciplinary treatment plan that includes bladder-specific therapies (such as instillations, medications, and physical therapy) is often necessary to fully manage both conditions. Other factors like pelvic floor dysfunction, fibroids and adenomyosis can complicate symptoms and need to be addressed as well.
Wrapping It Up: A Holistic Approach to Treatment
Endometriosis and IC/BPS are complex conditions with many overlapping symptoms and causes. They both involve immune and nerve dysfunction, which is why addressing only one condition won’t bring full relief. A combination of excision surgery for endometriosis and targeted treatments for IC/BPS is often the best path forward .
If you’re dealing with endometriosis and/or IC/BPS, know that you’re not alone. These conditions are difficult but with the right care, you can improve your quality of life.
Below are the references and resources for the information I provided in this blog post, in case you’d like to explore this topic further:
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Anaf V, Chapron C, El Nakadi I, De Moor V, Simonart T, Noël JC. Pain, mast cells, and nerves in peritoneal, ovarian, and deep infiltrating endometriosis. Fertil Steril. 2006 Nov;86(5):1336-43. doi: 10.1016/j.fertnstert.2006.03.057. Epub 2006 Sep 27. PMID: 17007852.
Andres, M. P., Arcoverde, F. V. L., Souza, C. C. C., Fernandes, L. F. C., Abrao, M. S., & Kho, R. M. (2020). Extrapelvic Endometriosis: A Systematic Review. J Minim Invasive Gynecol, 27(2), 373-389.
Australian Institute of Health and Welfare. Endometriosis, 2023. https://www.aihw.gov.au/reports/chronic-disease/endometriosis-in-australia/contents/about
Clemens, J., Erickson, D., Varela, N., & Lai, H. (2022). Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome. Journal Of Urology, 208(1), 34-42. Doi: 10.1097/ju.0000000000002756
Delbandi AA, Mahmoudi M, Shervin A, Akbari E, Jeddi-Tehrani M, Sankian M, Kazemnejad S, Zarnani AH. Eutopic and ectopic stromal cells from patients with endometriosis exhibit differential invasive, adhesive, and proliferative behavior. Fertil Steril. 2013 Sep;100(3):761-9.
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Grassetto A, Vicenti R, Garolla A, et al. Mast cells as key players in endometriosis. Am J Reprod Immunol. 2018;80(5):e12998.
International Working Group of AAGL, ESGE, ESHRE and WES; Tomassetti C, Johnson NP, Petrozza J, Abrao MS, Einarsson JI, Horne AW, Lee TTM, Missmer S, Vermeulen N, Zondervan KT, Grimbizis G, De Wilde RL. An international terminology for endometriosis, 2021. Hum Reprod Open. 2021 Oct 22;2021(4):hoab029. doi: 10.1093/hropen/hoab029. PMID: 34693033; PMCID: PMC8530702.
Malena, M., Fitzgerald, J., & Park, A. (2024, February 2). Interstitial cystitis & endometriosis: two sides of the same coin? BackTable. https://www.backtable.com/shows/obgyn/articles/interstitial-cystitis-endometriosis-two-sides-same-coin
McNamara HC, Frawley HC, Donoghue JF, Readman E, Healey M, Ellett L, Reddington C, Hicks LJ, Harlow K, Rogers PAW, Cheng C. Peripheral, Central, and Cross Sensitization in Endometriosis-Associated Pain and Comorbid Pain Syndromes. Front Reprod Health. 2021 Sep 1;3:729642. doi: 10.3389/frph.2021.729642. PMID: 36303969; PMCID: PMC9580702.
Mick I, Freger SM, van Keizerswaard J, Gholiof M, Leonardi M. Comprehensive endometriosis care: a modern multimodal approach for the treatment of pelvic pain and endometriosis. Therapeutic Advances in Reproductive Health. 2024;18. doi:10.1177/26334941241277759
Possover, M. Neuropelveology: An Emerging Discipline for the Management of Chronic Pelvic Pain Int Neurourol J. 2017;21 (4): 243-246. Publication Date (Web): 2017 December 31 (Review Article) doi:https://doi.org/10.5213/inj.1735036.518
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Self-Reported Pain and Quality of Life Following Laparoscopic Excision of Endometriosis as Measured Using the Endometriosis Health Profile-30: A 5 Year Follow-Up Study. Donnellan, N.M. et al. Journal of Minimally Invasive Gynecology, Volume 25, Issue 7, S54
Soares M, Luyckx M, Maillard C, Laurent P, Gerday A, Jadoul P, Squifflet J. Outcomes after Laparoscopic Excision of Bladder Endometriosis Using a CO2 Laser: A Review of 207 Cases in a Single Center. J Minim Invasive Gynecol. 2023 Jan;30(1):52-60. doi: 10.1016/j.jmig.2022.10.005. Epub 2022 Oct 21. PMID: 36280201.
The Endometriosis Summit. (2021, February 15). How the bladder generates more pain in people with endometriosis than you’d expect [Video]. YouTube. https://www.youtube.com/watch?v=lJNcMZJoS-k
Yeung P Jr . The laparoscopic management of endometriosis in patients with pelvic pain. Obstet Gynecol Clin North Am. 2014 Sep;41(3):371-83.
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