Endo vibes.

Buckle up. We're going deep.

Hey friends! I couldn’t let the month of March — aka endometriosis awareness month(!) — go by without re-sharing this goodie. I shared it last March, too, so now I guess it’s tradition!? This was originally published in 2022, when I had just a fraction of the readership that I do now. If you’re new since then, I’m so glad you’re here! If you’re a hardcore oldie, you’re a goddamned rock star. Thank you!

Related reading:

• Endo pain after surgery: WTF?! An exploration in what can go wrong after excision surgery.

• How heavy is too heavy? If you’re wondering about whether or not your period is “normal”, this might be a good place to begin.

• A love poem to all the belly scars. On scar tissue, including endo and c section scars.

• The many flavors of painful sex. A dive into how sex can hurt and what it may imply.

If you’ve been reading this newsletter for a minute, you know that I love treating complex pelvic pain conditions. It’s not that I’m a sadist, I just love working with people’s nervous systems, and seeing the healing process is a privilege and really satisfying, if I’m being honest.

One of the most common co-morbid conditions I see is endometriosis. And that’s for good reason — it’s estimated that endometriosis occurs in one out of ten people with a uterus. Read that again. You know ten people with a uterus, right?

source: Duvet Days

Here’s the tl;dr:

• Getting an endo diagnosis can be tricky, and the average time from onset of symptoms to diagnosis can be up to ten years. Advocate for yourself if you’re suspicious.

• It. Is. Not. Normal. To have insane, debilitatingly painful periods. Our culture has normalized period pain and providers are happy to hand out birth control as a band-aid. If you experience these symptoms, don’t settle for dealing with it.

• Pelvic floor therapy for endo is much like many other pain conditions, where we are treating muscle tension that develops as a response to being in so much discomfort. It really helps, but it won’t address root cause: hormonal issues.

The deep dive:

Let’s start by acknowledging the fact that endo is kind of a hotbed of controversy, and obviously I won’t cover everything there is to know here. Instead, I’m going to give you a basic overview of what endo is and then pivot to how pelvic floor therapy can be supportive.

The reality is that people with endo are wildly underserved and under-recognized by the medical system, because, lol, why would we care about pain experienced by people with uteruses, right? Here are some basic facts about endo:

• The hallmark physiological marker of endometriosis is the presence of endometrial tissue — the stuff that should normally line the inside of the uterus — outside of the uterus. That shit can bond to almost anything, anywhere. It’s most common to have endometrial lesions on the organs of the lower abdominal cavity (bowel, rectum, small intestine, outside of uterus, ovaries, etc.), but there have been case studies finding endometrial lesions in the ears, lungs, and the brain. WILD.

• Diagnosing endo is tricky AF. Here’s some controversy: some folks believe that exploratory laparoscopic surgery is necessary to truly diagnose endo, whereas other recent research suggests that this shouldn’t be done as a first line diagnostic because of its invasive nature. Other diagnostics include pelvic ultrasound and genetic testing as well as other biomarkers. A comprehensive patient interview is recommended to coalesce symptoms. I found this symptom graphic really helpful:

graphic credit: Pelvic Sanity

• Clearly, the primary things we often think of (painful periods and heavy periods) aren’t the only things at play. When folks come to me with painful sex/long history of hormonal birth control due to heavy and painful periods/GI constellation, I immediately begin to suspect endo. But alas, I lack a full body scanner in my eyes.

• Our best understanding of what causes endometriosis is the theory that “retrograde menstruation” occurs in those with endo. Essentially, this means that different types of endometrial cells can break away and flow away to different parts of the pelvic and abdominal cavity. We *think* this is ultimately due to an excess of estrogen in the body and/or a significant imbalance in steroid hormones (i.e. estrogen:progesterone:testosterone). When endometrial lesions form, crazy shit happens: they create new blood vessels and nerves, and there is cellular communication between the new nerves (causing pain, obvo) and the immune system, thus making endometriosis a “neuro-inflammatory” condition.

As with anything other condition, there are many approaches to treating endo, and they are in no way mutually exclusive. They include:

• Surgical excision of lesions: While this is the gold-standard of diagnosis and treatment, excision surgery has recently come under debate, as many of the randomized control trials supporting its efficacy are small and lacking follow up. Furthermore, recurrence rates of endometrial lesions are up to 40-50%. Anecdotally, I’ve seen this intervention most when folks are struggling with secondary infertility due to endometriosis and are trying to conceive, but many other folks not trying to conceive also choose excision — and that’s a valid choice!

• Medical management: This approach refers to hormonal medications that manipulate hormonal balance to hopefully address why endo is occurring in the first place. Primarily, this looks like oral contraceptives, but can also be any number of progesterone-modulators. The downside here is that all of these medications can have significant side effects, and being on contraceptives isn’t really helpful if you’re trying to get knocked up. Tricyclic antidepressants and SSRIs have also been shown to be helpful in the treatment of endometriosis, primarily (again, we *think*) because they reduce overall nervous system sensitization.

• Nutrition and anti-inflammatory therapies: The majority of these are still undergoing trials, but there is significant promise for the following interventions: increasing Omega-3 fatty acids, green tea, curcumin, and resveratrol.

• Movement, manual therapy, and stretching: Here’s a cute thing I hate to admit: there’s no good research to support pelvic floor therapy and movement-based strategies — mostly because there isn’t a lot of research on it. There are individual studies that support manual therapy as a means to improve pelvic floor relaxation in those with deep endometriosis lesions, but when you put it on a macro scale, it’s a tough sell.

But here’s why pelvic floor therapy rules!

With that said, I’m going to tell you why I think pelvic floor therapy is the absolute shit for folks with endo. Because of the intense discomfort endo creates in the body, we end up with this gnarly feedback loop of endo pain » muscle holding » amplified endo pain » more muscle holding » pelvic floor dysfunction (incontinence, painful sex, painful peeing and pooping, etc.). Manual therapy breaks that cycle at the “muscle holding” part of the chain. It also directly addresses any pelvic floor dysfunction, like painful sex and painful peeing/pooping, by reducing muscle tension.

Whether it’s internal pelvic floor work or visceral manipulation for associated GI issues, it’s an opportunity to work with the nervous system and disrupt that neuro-inflammatory process I mentioned earlier. I’ve also seen it work wonders post-surgical excision to continue to address painful sex and any potential scar tissue that could form in the abdomino-pelvic wall as a result of the surgery itself.

Furthermore, breath work and movement can bring much needed blood flow to the pelvic floor and pelvic cavity and help release the pelvic floor, in addition to giving folks a mechanism of self-efficacy around a condition that can feel life-consuming. It’s also another well known and effective way to communicate with the nervous system, and therefore another opportunity to disrupt the neuro-inflammatory pathways of endo. Quite simply, when life feels wild and out of control, and everything that helps is external, it can feel really fucking good to be able to do something for yourself.

The take-home:

Phew. So that was a lot.

There’s no right or wrong way to manage endo. What’s important is that you have a care team that listens and supports you fully. Here are some resources I really like:

Dietary and medical:

• Basically all of Dr. Aviva Romm’s work is magical, and everyone with a uterus should read her stuff, IMO. Her book Hormone Intelligence is a bible of mine, and I also recommend this podcast episode addressing endo specifically.

• Outsmart Endometriosis is a fantastic book written by a PT addressing nutrition and lifestyle connections to endo.

• Despite the cis-normative title, Woman Code can be a great resource to help better understand parts of the menstrual cycle and how that can interplay with all kinds of hormonal dysfunctions.

Instagram accounts that give you life:

• Lara Parker (@laraeparker) is an outspoken endo advocate and a great resource if you’re looking into cannabis use for endo care. Also her book Vagina Problems is delightful.

• Tight Lipped (@tightlippedorg) is an organization that is doing absolutely rad advocacy around pelvic pain conditions. Their podcast is also fantastic for folks going through it!

• The Endo Space (@the_endo_space) is a nice combo of general support and medical information about different pathways of treatment.

Movement:

• I couldn’t find a movement platform or space dedicated to folks with chronic pelvic pain, so I decided to create one. My baby, aka Ritual Movement, is available, and you can use the code HELLO for a free month.

Regardless of where you’re at in your journey, know that there are folks out there who want to support you. If I can ever be of personal support to you, don’t hesitate to get in touch. I’m at cait@ritualpelvichealth.com.