Common Co-Conditions
Endometriosis can occur with other common co-conditions or pain generators. Apart from the ones I talk about more in depth on this page, these could be conditions like vulvodynia , myofascial pelvic pain, pudendal neuralgia, occult hernia, fibroids, pelvic congestion syndrome, fibromyalgia, inflammatory bowel disease, or others. See Related Conditions on Nancy’s Nook for links/info to some of those, or the CEC article Pain Relief after Excision of All Endometriosis
Scroll down or click each category for resources for:
- Adenomyosis
- Pelvic Floor Dysfunction
- Interstitial Cystitis/Painful Bladder Syndrome
- Sibo and Problems with Gut Health
Related Podcast Episodes
Adenomyosis
Adenomyosis is a common co-condition of endometriosis and can be a huge source of pelvic pain. Adenomyosis is not the same disease as endo (some people say it’s endometriosis of the uterus but it’s not). Adenomyosis is defined as “the presence of endometrial glands and stroma found within the myometrium.” (Definition source: CEC website.) Basically, it’s when the endometrium (inner lining of the uterus) invades the muscular portion of the uterine wall.
Adenomyosis can have overlapping symptoms with endometriosis, and for some people is a source of continued pelvic pain post-excision.
- Adenomyosis – from Nancy’s Nook. At the bottom after the references, there are several links to more info.
- Adenomyosis – from the CEC.
- Adenomyosis Live: Learn All About Adeno – Video from the Endometriosis Summit. Two excision surgeons discuss adenomyosis.
Pelvic Floor Dysfunction
The muscles, ligaments, nerves, and fascia can all drive pain, which is why many people with endometriosis find pelvic floor therapy to be helpful or do it as a next step after having excision. PFT may help with vulvodynia, painful sex, constipation/diarrhea, Interstitial Cystitis/Painful Bladder Syndrome, pelvic pain, leg pain, and more. PFT may include: manual therapy, biofeedback, trigger point release, breathing exercises, connective and scar tissue mobilization, posture correction, and more. It may involve internal as well as external work, but the therapist will get your consent before doing any internal work. There are also wands and other tools, as well as stretches and techniques that they can show you how to use at home to work on your pelvic floor. Patients often have 1-2 sessions per week for 8-12 weeks.
Just like we need to see a specialist in endometriosis and not just any gynecologist for our endometriosis treatment, we need to see a pelvic floor therapist who is familiar with treating patients with endometriosis. Pelvic floor therapy is not one size fits all, and some pelvic floor therapists may not have the knowledge to treat the pelvic floor of someone with endometriosis.
For more info
- Pelvic Physical Therapy – Overview and PFT myths on Nancy’s Nook
- Physical Therapy Resources – Resources from Nancy’s Nook
- Pelvic Pain and Endometriosis: What is What! – Video from the Endometriosis Summit
- Vulvodynia and Endometriosis: How PT Can Help Both Disorders and More – Video from the Endometriosis Summit with Dr Amy Stein
- Endometriosis, Your Pelvic Floor, and You – Video from the Endometriosis Summit
- The A-Z of Physiotherapy Treatments in Endometriosis – Written by Ruth Schubert: physiotherapist. This specific article is helpful to understand PFT, but I don’t endorse the rest of the endometriosis educational posts on their website.
- Beyond Basics Blog – Beyond Basics is a PFT practice in NY founded by Dr Amy Stein, who co-wrote Beating Endo and Heal Pelvic Pain
Related Podcast Episodes
Interstitial Cystitis/ Painful Bladder Syndrome
Interstitial cystitis and endometriosis have been called the Evil Twins Syndrome* in patients with chronic pelvic pain (*coined in a 2002 study by Dr. Maurice K. Chung.) Endometriosis and IC can have similar symptoms, and one reliable study showed that about 40% of people with endometriosis also had IC.
Interstitial cystitis/bladder pain syndrome (IC/BPS) officially defined as “An unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than six weeks duration, in the absence of infection or other identifiable causes.” (Source: IC Network)
The bladder can be a huge driver of pelvic pain. On the other hand, IC isn’t solely a bladder condition, and the bladder has been called an “innocent bystander” in IC by Dr Kenneth Peters, who is the head of Urology at Beaumont University. Bladder and urinary symptoms often have a component from the pelvic floor and autonomic nervous system that need addressing as well. Studies have shown that about 90% of people with IC have pelvic floor dysfunction. So PFD could be causing or exacerbating your urinary symptoms. In fact, the only treatment for IC/PBS that is given an Evidence Strength Grade A by the American Urological Association is manual physical therapy. See pelvic floor therapy above for resources.
Unfortunately, like with endometriosis, IC/PBS is a condition that is full of misinformation, stigma, and doctors who are not often up to date on the latest treatments. The following resources are a wealth of information to learn more on the condition. This can help you be more informed when working with your doctor on treatment options, or even to realize that your doctor isn’t up to date and you’d like to seek a second opinion.
I have struggled with IC since I was 19. What helped me most was: down regulating my autonomic nervous system and getting out of constant fight or flight, diet change (there is no IC diet – it’s individual to each of us), excision surgery, and treating SIBO (info is emerging that SIBO may play a role in the IC of some patients). These changes happened over a decade and not all at once, but after each of these changes, I saw a significant reduction in my symptoms. My score on the PUF questionnaire was a 29 when my IC first began, and now it’s a 10!
For more info
- IC Network
- Interstitial Cystitis Association (ICA)
- Interstitial Cystitis Solution: A Holistic Plan for Healing Painful Symptoms, Resolving Bladder and Pelvic Floor Dysfunction, and Taking Back Your Life by Nicole Cozean. I highly recommend this book. It’s easy to read, has well-researched info, and gave me a good understanding of the condition and multifactorial ways to address it. Nicole is a pelvic floor therapist, and on her instagram IGTV she busts 8 common myths about IC. It’s a great series to check out!
- The Pelvic Pain and Urgency/Frequency Patient Symptom Scale – downloadable PDF from the ICA. Is helpful for monitoring your symptoms before and after treatments.
- American Urological Association Guidelines for IC/BPS
- Overview of the AUA Guidelines for IC/BPS – downloadable PDF with expanded info from the ICA on the Guidelines above.
- How the bladder generates more pain in people with endometriosis than you’d expect – Video by the Endometriosis Summit
Related Podcast Episodes
- Endo’s Evil Twin: Interstitial Cystitis/Painful Bladder Syndrome (coming soon)
- Interstitial Cystitis/Painful Bladder Syndrome. Part 2 (coming soon)
- Living with Interstitial Cystitis/Painful Bladder Syndrome. Part 1 (coming soon)
- Living with Interstitial Cystitis/Painful Bladder Syndrome. Part 2 (coming soon)
SIBO and Problems with Gut Health
Many of us with endometriosis have digestive problems. According to the CEC’s website, they have their patients fill out a pre-operative questionnaire, and here are some statistics: “intestinal cramping and painful bowel movements occur in approximately 25% of patients; constipation occurs in 35% of patients and diarrhea occurs in more than 60% of patients.”
However, we don’t need to have endometriosis on our bowel to have digestive problems (bowel endometriosis is generally found in about 10-15% of people with endo.) There are a variety of reasons we can have digestive problems, from food intolerances, to endo inflammation, to needing digestive enzymes, to co-conditions like Crohns, colitis, gastritis, gut dysbiosis or SIBO. One small study of 50 people with endometriosis found that 40 of them had SIBO. That’s 80%!
For more info
- Constipation, SIBO & Other GI Issues Can Be A Red Flag For This Condition – This article has an except from the book Beating Endo, by Iris Orbuch and Amy Stein. However, prior to the excerpt, the definition of endometriosis is wrong, so keep that in mind.
- Endo Belly – Vital Health Endometriosis Center blog post.
- Endometriosis and Gastrointestinal symptoms – Article by Dr. Iris Orbuch, co-author of Beating Endo.
- SIBO Info – “The place for all things SIBO”, an educational website by Dr. Allison Siebecker, ND, MSOM, LAc, a leader in the field of SIBO.
- Gut Health – Detailed, free downloadable e-book by Dr. Chris Kresser.
- Low FODMAP diet – This diet has been beneficial to many people with IBS or SIBO and may be worth researching if you have digestive problems, although it’s not recommended to follow this diet more than a few months. Monash University is one of the leaders in this diet and their app is extremely helpful!
- Moore JS, Gibson PR, Perry RE, Burgell RE. Endometriosis in patients with irritable bowel syndrome: Specific symptomatic and demographic profile, and response to the low FODMAP diet. Aust N Z J Obstet Gynaecol. 2017 Apr;57(2):201-205. doi: 10.1111/ajo.12594. Epub 2017 Mar 17. PMID: 28303579.