Endo belly is a term and phenomenon that (unfortunately) almost all of us with endometriosis are familiar with — that uncomfortable bloating sensation and distention of our abdomens that leave us looking 6 months pregnant.

It’s important to note upfront: the word “bloating” is often used to describe that big, swollen, pregnant-looking belly we experience, but that’s not technically correct. Bloating is a sensation of fullness or pressure in the abdomen, without a visual change in how the abdomen actually looks. Distention is what describes the visual increase in the abdomen’s size, a.k.a. what most of us are calling endo belly. You can be bloated without distention, or distended without feeling bloated.

Some people experience endo belly more cyclically, while for others it’s a daily struggle. But while we all know what endo belly looks and feels like, we have yet to fully understand… what is the actual cause of it? Just knowing we have endometriosis isn’t a sufficient explanation for why our abdominal distention is occurring, and doesn’t really arm us with anything useful for addressing it.

This lack of clarity behind what’s really driving our endo belly is likely because it can be multi-factorial. Potential causes of endo belly can be:

• Abdominophrenic dyssynergia (which will be the focus of the rest of this article)

• Inflammation (which the majority of us endo patients certainly have)

• Hormonal changes that cause digestion to shift and slow

• Gut issues such as IBS or SIBO (a recent study found that 91.9% endometriosis patients tested positive for SIBO, and SIBO can cause pretty extreme abdominal bloating and distention via fermentation that produces high gas levels)

Living With Endometriosis

SIBO Series #1: SIBO & Endometriosis - An Emerging Connection

Those of us with endometriosis (& adenomyosis) know all too well — or are really starting to realize — how many other conditions like to tag along for the ride…

Read more

a month ago · 4 likes · The Endo Navigators

• Visceral hypersensitivity — when this happens, our gut is basically overly sensitive to bodily signals, so what might feel like mild bloating to a “normal” person presents in a much more extreme manner for endo patients

• Scar tissue and adhesions — whether from endometriosis itself or from the abdominal surgeries we undergo to address the endo, these fibrous bands can affect the position of the intestines, which in turn affects digestion and/or the movement of stool and gas

• Central sensitization (which has recently gained attention for endometriosis patients) is essentially when the volume knob on our pain signals gets turned up higher than normal by our nervous symptoms. Digestive symptoms or situations that wouldn’t normally cause issues now have the ability to trigger intense pain, discomfort, and/or swelling.

• MCAS or histamine intolerance — both of these conditions can have gastrointestinal manifestations

Living With Endometriosis

If You Have Endometriosis, You Should Know About Mast Cells

For as long as I can remember, I’ve dealt with all sorts of uncomfortable symptoms—eczema, hives, skin rashes, acid reflux, constipation, bloating, IBS, painful and heavy periods, low back pain, chronic UTIs, and more. Like many of you, I spent years feeling dismissed, told to just take birth control or switch brands, or to use more ibuprofen. None of i…

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25 days ago · 5 likes · The Endo Navigators

• Pelvic floor dysfunction (another occurrence that many of us with endo know all too well) — the dysfunction/tightness/pain that results from pelvic floor dysfunction can affect the way the gut is moving stool and gas along, potentially leading to bloating and distention.

What is APD (Abdominophrenic Dyssynergia).

Somehow, this condition has not crossed my radar until recently, and it feels like I’ve had a huge revelation about why I’m still struggling with endo belly even after having expert excision surgery.

To explain it briefly:

APD stems from an issue with our gut-brain communication. This miscommunication basically causes the muscles of our abdominal wall and our diaphragm to stop coordinating properly, resulting in abdominal distention (that big swelling of our bellies).

Simply put (and as illustrated above), normally, when you eat, your diaphragm should relax and move upward, creating more space in your abdominal cavity for whatever you’re consuming, while your abdominal wall muscles contract and hug in to prevent distention.

This is known as abdominal accommodation. Your diaphragm and abdominal wall are working together to make space for your food and drinks while also hugging the belly area up and in.

With APD — the brain and body have gotten their signals crossed, and in their confusion, the opposite is happening.

With APD, when you consume something, the diaphragm contracts instead of relaxing and therefore moves downward, applying pressure to the contents of the abdomen. At the same time, the abdominal wall muscles RELAX (instead of tightening and hugging in), which allows your abdomen to distend outwards and have that “endo belly” appearance.

This is a somatically conditioned response, meaning it is something the body has learned to do over time. At some point, for some reason, the body got confused and started doing the opposite of what it’s supposed to do.

My personal experience

I have struggled with extreme endo belly for 3+ years now. I’ve also tested positive for SIBO during this time, which does cause bloating and distention, so I always chalked my pregnant-looking abdomen up to that.

Living With Endometriosis

SIBO Series #2: So You Have Endo & Wonder if You Have SIBO — Now What?

In post #1 of this series, we reviewed how ridiculously prevalent SIBO appears to be in women with endometriosis (this study showed 91.9% of women with endo tested positive for SIBO…

Read more

21 days ago · 3 likes · The Endo Navigators

But recently, I started paying closer attention. I noticed that my abdomen would get distended IMMEDIATELY after finishing a meal, which didn’t really make sense from a SIBO perspective.

SIBO involves bacteria in your small intestine fermenting what you eat and producing gasses. This means that what you’ve eaten needs to make it to your small intestine before that gas can start being produced and causing distention — and after eating, it typically takes your food 40-120 minutes to get to the small intestine.

I decided to test the theory. If my distention was due purely to SIBO, drinking a glass of water shouldn’t set it off (in theory), as water does not get fermented by SIBO bacteria.

So, one morning when I woke up with a fairly flat stomach, I chugged two glasses of water — and what happened next blew my mind. Almost immediately, my stomach distended out SO far and I looked 6-months pregnant. While I haven’t been “formally” diagnosed with APD, this pretty much confirmed it for me in my own mind.

The Science

While APD is not very commonly diagnosed or even discussed, there has been some fascinating research on it that has come out recently.

If you’re interested in a general scholarly overview of the condition, you can read about it here.

If you’re curious about a recent clinical trial that showed promising results for treating APD with specific breathing and physical therapy techniques, you can find that here.

Stick around or join us over at @theendonavigators. I’ll be breaking down these studies and what’s been shown to be effective for treating APD, and I’ll be trialing these treatments myself and documenting how they go.

Overall, I just wanted to bring this condition to your attention as a possible contributing factor to endo belly — while stressing the fact that because it stems from a learned bodily response due to a gut-brain miscommunication, it is possible to address it and retrain the body to respond correctly!

Disclaimer: This content is for general informational and educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult your healthcare provider.

The experiences and opinions shared below belong solely to the individual commenters. We do not endorse, verify, or affirm any medical claims or advice shared in the comment section.

Unfortunately, healthcare is often divided by body system. You might see a dermatologist for your skin, a gastroenterologist for your digestive symptoms, and a cardiologist for heart racing or lightheadedness. Each specialist may be helpful, but it can still be difficult to find someone who steps back and asks how everything may be connected.

When my doctors aren’t willing to “be on my team” or learn about treatments outside the conventional options for endometriosis and MCAS, I look for one who will.

In my experience, doctors who spend more time with patients or offer concierge medicine are often open to exploring holistic options, looking for root causes, and creating a treatment plan just for you. Integrative and Functional medicine doctors, in particular, specialize in this holistic approach.

What Is an IFM-Certified Doctor?

IFM stands for the Institute for Functional Medicine. An IFM-certified doctor is a physician who has completed additional education in the functional medicine model.

They are still a medical doctor. They diagnose medical conditions, order and interpret laboratory tests, prescribe medications, and provide medical treatment using the same foundational medical training as other physicians. Their functional medicine education adds another framework for understanding complicated health concerns.

Functional medicine doctors are trained to look at the whole person rather than examining each symptom or body system separately. They consider how the immune system, gastrointestinal system, nervous system, hormones, environment, nutrition, lifestyle, and medical history may interact.

This whole-person approach can be particularly useful for MCAS because mast cells are found throughout the body and can produce symptoms involving multiple systems.

How Does a Functional Medicine Doctor Approach MCAS?

A functional medicine doctor will diagnose and treat MCAS like any other medical condition. The difference is that they often spend more time going over your history and ask bigger-picture questions when planning your treatment.

In addition to evaluating your current symptoms, the doctor may investigate:

• When your symptoms first began

• What was happening with your health before they started

• Whether your symptoms worsened after an infection, illness, surgery, medication, or environmental exposure

• Which foods, medications, hormonal changes, environments, or stressors appear to trigger reactions

• Whether your symptoms affect multiple body systems

• Whether gastrointestinal conditions may be affecting your immune health

• Which treatments you have already tried

• How your symptoms and triggers have changed over time

• How mast cell activation may interact with other conditions in your body, including endometriosis or adenomyosis

Functional medicine often refers to this as a “root cause” approach. A root cause approach means the doctor looks for factors that may have contributed to the condition, continue to trigger mast cell activation, or make your symptoms more difficult to control.

A “traditional” doctor may instead only ask, “How can we reduce this symptom?” and then ignore the root cause. They might not even know how to test for MCAS, or they might do it only following Consensus 1 criteria instead of Consensus 2 criteria . The test would likely come back falsley negative, and you’d be back to square one. To learn more about Consensus 1 vs. 2 criteria and testing, check out my last articles.

How Might Treatment Be Different?

A functional medicine doctor will use many of the same medications and diagnostic tests used by other “traditional” doctors who treat MCAS. In addition, they will also address your nutrition, gastrointestinal health, inflammation, environmental triggers, stress, sleep, hormones, and other contributing factors.

Depending on your individual symptoms and needs, a functional medicine approach may include:

• Medications to reduce mast cell activation or block the effects of mast cell mediators

• Identifying and reducing avoidable triggers

• Evaluating reactions to foods, medications, and environmental exposures

• Trying a low-histamine diet when appropriate

• Addressing gastrointestinal symptoms and related conditions

• Supporting the gut microbiome and intestinal barrier

• Correcting nutritional deficiencies

• Building an anti-inflammatory eating pattern around foods you tolerate

• Incorporating selected foods or nutrients with anti-inflammatory or mast cell–stabilizing properties

• Addressing sleep, stress, movement, and other lifestyle factors

• Monitoring your symptoms and adjusting the plan over time

The plan should be personalized because people with MCAS can have different symptoms, triggers, causes, and food tolerances.

One person may find that foods containing higher amounts of histamine worsen their symptoms. Another may be more affected by medications, temperature changes, fragrances, infections, hormonal changes, or environmental exposures.

A functional medicine doctor looks at your whole health picture before deciding which treatments might help and will keep working with you until they find what works.

An integrative medicine doctor can also be a good choice if you want a whole-person approach to MCAS.

Integrative medicine combines conventional medical care with evidence-informed approaches involving nutrition, lifestyle, mind-body health, and complementary therapies. Like functional medicine, it considers the whole person and how different areas of health may interact.

Credentials to Look For

Some certifications, credentials, and training programs to look for when researching doctors who will take a root cause or full-body approach to diagnosing and treating mast cell activation syndrome include:

• IFMCP, FMCP, or FMCP-M: Functional medicine certifications associated with the Institute for Functional Medicine. You can search for providers through the IFM practitioner directory.

• ABAARM: Certification through the American Board of Anti-Aging and Regenerative Medicine. You can search through the A4M provider directory. Under “Select Product or Service,” you can also check “Mast Cell Activation”

• ABOIM: Board certification through the American Board of Integrative Medicine. Try searching online for “ABOIM doctor near me” or including “ABOIM” with your city and state.

• Integrative Medicine Fellowship or AIHM Fellowship: Additional fellowship training in integrative and whole-person medicine.

When you search a directory, check the provider’s credentials. Those who can manage your medical care, diagnose, and prescribe medications include MDs, DOs, PAs, DNPs, and others.

Schedule a Consultation Before Committing

Many functional and integrative medicine doctors offer a free 15-minute phone call or an introductory consultation. If you can, I highly recommend taking advantage of this before booking and paying for a full appointment.

This gives you an opportunity to “vet” the doctor and determine whether their approach aligns with what you need.

Consider asking:

• Do you regularly diagnose and treat MCAS?

• Which diagnostic criteria do you use?

• Do you use or consider the Consensus-2 criteria?

• Do you order and interpret mast cell mediator testing?

• Is the office familiar with the special collection and handling requirements for these specimens?

• Do you also investigate potential triggers and factors that may perpetuate mast cell activation?

• Are you familiar with the relationship between MCAS and endometriosis?

• Will you collaborate with my primary care provider and other specialists?

You can also review the doctor’s website for any mentions of “mast cell activation syndrome” or “root cause medicine”.

What Should You Expect at Your First Appointment?

Your first functional medicine appointment will probably be longer and more detailed than a regular medical visit (mine usually last 60-90 minutes). The provider should ask you to fill out a full health history or timeline before you come in, including:

• Current and previous symptoms

• Childhood and adult health history

• Allergies and reactions

• Gastrointestinal symptoms

• Infections and major illnesses

• Surgeries and procedures

• Medications and supplements

• Food patterns and possible dietary triggers

• Environmental or occupational exposures

• Hormonal and menstrual patterns

• Sleep, stress, and physical activity

• Family medical history

• Treatments you have tried and how you responded

The provider will look for patterns in your history instead of looking at each symptom by itself. This is especially helpful if you have symptoms in different body systems that were treated as separate issues before, like with endometriosis.

What to Bring With You

To help your doctor understand your full health picture and to be prepared, bring:

• A timeline showing when your symptoms began or worsened

• A list of symptoms organized by body system

• A list of known or suspected triggers

• Previous laboratory results

• Relevant imaging and procedure reports

• A current medication and supplement list

• A record of treatments you have tried and how you responded

• Photographs of visible reactions, such as hives, flushing, rashes, or swelling

• A list of questions you want answered

By the end of your visit, you should know the initial plan, which tests are being ordered, how to collect those tests, which treatments are being considered, and when your next follow-up will be.

If you continue to feel that your concerns are being dismissed rather than evaluated, seeking a second opinion is ALWAYS an option. Be tenacious. Do not stop until you find someone who can help you!

You deserve a doctor who is willing to be on your team, look at the full picture, explain their reasoning, and explore appropriate options with you.

Disclaimer: This content is for general informational and educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment.
Always consult your healthcare provider. The experiences and opinions shared below belong solely to the individual commenters. We do not endorse, verify, or affirm any medical claims or advice shared in the comment section.

At the time, Mallory — who is now my other half here at The Endo Navigators — was a friend who had already been through surgery for endometriosis. Because she didn’t know then what we know now, she ended up with a surgeon who didn’t have the skillset or the team needed to properly excise her stage 4 disease, and was left with an incomplete surgery. She didn’t want that to happen to me, so she coached me on exactly what to look for in an endo surgeon.

That experience is what pushed us to help empower other women the same way. Together, we put together a thorough guide called “Tips for Vetting an Endometriosis Surgeon”, designed to help other women find surgeons who are truly well-versed in treating this disease properly and responsibly. It includes a printable list of questions you can bring to your consultations, along with what to look for in each surgeon’s answers — and why.

That guide is what I used to find my own surgeon, and I couldn’t be happier with the care she gave me, even though it meant traveling out of state to see her. I want to be upfront that I recognize traveling out of state isn’t financially or logistically possible for everyone (honestly, it was a stretch for me, but I just wasn’t willing to accept the lesser standard of care being offered by the surgeons in my state). I really just want to show women what compassionate, thorough care in the endometriosis space can actually look like — because it does exist, and it’s what you deserve and can strive for by advocating for yourself.

Prior to Surgery

She offered a free phone consultation to kick-off the process.

At this point, I still only had a suspicion that I had endometriosis. Traveling out of state to consult with a surgeon in person, without being able to talk things through first and see if I liked her bedside manner, didn’t feel feasible. That’s why this call was so helpful. The surgeon asked me about my symptoms and history, and was able to tell me with confidence that it was “90% likely” I had endometriosis — and potentially adenomyosis, too.

I actually had another free phone consultation with a different expert endo surgeon while exploring my options, and she told me the exact same thing. Getting that validation from two experts in the field gave me the motivation to start pursuing treatment seriously.

I also loved that my surgeon never once “pushed” surgery on me. She simply heard me out, gave me her honest opinion, and let me know her team was there if and when I wanted to move forward. She also confirmed that she performed excision surgery, not ablation.

At my in-person consultation, she performed a transvaginal ultrasound herself (with a live read) and a comprehensive physical exam.

There is a lot of confusion surrounding whether or not imaging can identify endometriosis. We review this in depth in our guide, but it boils down to this: it is very, very common for imaging (ultrasounds and MRI’s) to come back “normal”, even when someone does have endometriosis. For example, both Mallory and I had imaging done that showed “no signs of endometriosis” — but our surgeries revealed stage 4 and stage 2 endo, respectively.

THAT BEING SAID - true experts in the endometriosis space have completed training to be able to evaluate patients using transvaginal ultrasounds and actually identify endometriosis and adenomyosis. This is NOT the same as having a transvaginal ultrasound done at your local healthcare system.

For instance, the transvaginal ultrasound I had done at my local hospital showed “no signs of endometriosis”, as the radiologist who read the images likely did not have specialized training for identifying endo.

When my surgeon performed the transvaginal ultrasound herself at my initial consultation, she did a “live read”, meaning she assessed what she was seeing in real time and talked me through it as she went. Using this technique, she was able to identify endometriosis in several areas of my pelvis along with a high probability of adenomyosis.

This imaging prior to surgery is incredibly important, because it allows you and your team to go into surgery with a plan. For example, if endo is identified on the bowels, it often becomes essential to have a colorectal surgeon on your care team alongside your excision surgeon.

She then performed a thorough physical exam, both vaginal and rectal, to assess my pain and organ mobility (as endo can cause organs to adhere to each other or to the peritoneum).

She spent 90 minutes with me afterwards, answering my many questions with kindness and educating me along the way.

I came with a notebook FULL of questions. She was patient and kind, answering each one of them. She did not make me feel like I was burdening her, and was not resistant to answering anything I asked.

Your surgeon will be operating on YOUR body and affecting your quality of life moving forward. If this person made me feel like I couldn’t ask all the questions I needed to, I wouldn’t feel comfortable letting them operate on me.

She never once pressured me into having a hysterectomy, and understood my strong desire to keep my ovaries.

Green flag. These choices are deeply personal, and your surgeon should educate you on the pros and cons of options without pressuring you into anything you don't want.

Having a hysterectomy and/or removing your ovaries is not a cure for endometriosis (though a hysterectomy can be very effective for adenomyosis). Each of these actions affects hormone production (removal of the ovaries is most severe, putting women into menopause, which can have a massive impact on quality of life).

Proper education and a clear explanation of why a given route is being recommended is essential, so each patient can make an informed choice about what's best for them.

She prompted me to start pelvic floor physical therapy while waiting for my surgery date.

Looking back, this is one of the best things I did to set myself up for a successful surgical outcome.

Pelvic floor physical therapy often has a waitlist, so if you wait to set it up until closer to or after your surgery, you may not actually have access to it until much later than you want.

Being able to start before surgery was amazing, because I started to learn so much about my pelvic floor and how to breathe properly with my diaphragm — two tools that were essential to my recovery after surgery.

It also allowed me to build a good rapport with my PT and make sure I liked her bedside manner, so when I had pain/tightness/new sensations after surgery, I knew I could trust her to help me address it.

Before I even had my surgery, her team booked two post-op appointments for me (directly with the surgeon).

I keep seeing a lot of women being left hanging after their endo surgeries, and it honestly fires me up. We experience so many new sensations and changes after a surgery like this that inevitably leave us with questions like… “is this normal at 4 weeks out?”. Not having access to your surgeon and their team to ask these questions is not compassionate care.

Before I even had my surgery, the team made sure I was booked for two post-op appointments with my surgeon herself. One was 4 days post-op (in-person), and the other was 6 weeks post-op (virtually) after things had had time settle.

In between, I had direct access to her surgery assistant’s email so that I could ask any questions that popped up.

Day of Surgery

Prior to surgery, my surgeon came to see me in pre-op and introduced herself to my family. She let them know exactly what to expect from the day (timeline, communication, etc.).

When my surgery wrapped up and I was in the PACU, she found my family in the waiting room, told them exactly what she found (adenomyosis and endometriosis, including where the lesions were), and encouraged them to film her explaining all of this so they could show me the video later when I came out of my anesthesia fog.

She also checked in on me once I did wake up, and told me the same information she’d told my family.

After Surgery

Day 4 post-op, I had my first follow-up with my surgeon. I was able to ask questions about the sensations I was feeling (gas pain, super tight diaphragm, and painful bowel movements) and obtained reassurance that these things were normal at this stage.

She then provided me with a printout that detailed out a 90-day healing plan, including guidance on supplements (super helpful), diet, and exercise. She was also more than willing to discuss and even prescribe micronized Progesterone for me.

She and her team remain available and responsive via email. The safety I feel from building a care team that truly cares and does not leave me hanging can’t be overstated.

Lessons Learned

Looking back on the entire process, from that first free consult to the follow-up emails months later, what stands out most isn’t just her surgical skill — it’s that I never once felt like a burden or an afterthought. She and her team showed up for me before, during, and long after surgery, and that continuity of care is what compassionate treatment should look like.

That’s exactly why we built our surgeon-vetting guide — to help you ask the right questions of the surgeons who are actually accessible to you, and find someone who fulfills enough of what matters most to you to feel confident moving forward. You deserve a surgeon who listens, educates you honestly, and doesn’t leave you to navigate this alone.

FAQ’S

• What did the travel process look like?

  • I spent 8 days out of state for this surgery. I got there two days prior to set up my healing space, and I had to complete a bowel prep the night before surgery. I then stayed for 5 days after my surgery so I could attend my in-person post-appointment before going home.

• How long after the free consultation did you have to wait for the surgery?

  • I had my free consultation in February, and my surgery took place in May.

• Was insurance accepted?

  • Partially! The surgeon fee itself was not covered by insurance, but everything else (hospital, anesthesia, pathology fees, etc.) was actually in-network for me, even though it was out of state. You can always ask these surgeon offices to check your insurance for you and let you know what would and wouldn’t be in-network. While I was exploring surgeon options, I was honestly surprised by how many hospitals my insurance was in-network with throughout multiple states.

• How long before surgery did you start pelvic floor PT? When did you resume after surgery?

  • I started PT probably 3 weeks prior to surgery. In my ideal situation, I would’ve started sooner if they had availability! I resumed this PT about 3 weeks after surgery. I think a lot of people wait longer as your PT can’t perform any internal work at this time, but mine simply performed very gentle fascial work on my abdomen and taught me how to gently work on my scars once they were healed enough.

• Who was your surgeon?

  • For several reasons, I won’t be listing her name here publicly. Feel free to DM us on Instagram, though, if you’d like the name of her practice!

Disclaimer: This content is for general informational and educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult your healthcare provider.

The experiences and opinions shared below belong solely to the individual commenters. We do not endorse, verify, or affirm any medical claims or advice shared in the comment section.

I also want to highlight how important mental health is. If progestins work well for you, that’s great. If progesterone helps you, that’s wonderful too. But if you’re struggling with your mental health, whether you take these medications or not, remember that you have options. Don’t lose hope; keep looking for a doctor who listens and helps you find a treatment that makes you feel your best.

What is the difference between progesterone and progestins?

All hormonal birth control contraceptives use progestins, which are synthetic compounds designed to act on progesterone receptors. Progestin is not the same thing as progesterone, and progesterone is not the same thing as progestin.1

Much of the confusion comes from using the terms progesterone and progestin interchangeably, even though they are different hormones with different chemical structures and effects in the body. When discussing hormones, I think providers should clearly distinguish between the two rather than grouping them together. 2

Progestin is a synthetic hormone made in a lab. Unlike natural or bioidentical progesterone, it has a different chemical structure and lacks many of the natural hormone’s properties, like being anti-inflammatory and a mast cell stabilizer. 34 Progestin is a synthetic hormone, so it can have different systemic or androgenic effects than progesterone.5 It is found in birth control pills and IUDs, and is used to manage menstrual cycles, prevent overgrowth of the uterine lining and bleeding, and treat menopause symptoms. Some examples of synthetic progestins are medroxyprogesterone (MDA) (Depo-Provera), levonorgestrel (Mirena IUD), norethindrone acetate, drospirenone(Slynd), and norgestrel. Birth control contains progestins.

Unfortunately, 25-33% of endometriosis patients who take progestins do not achieve pain relief, either due to side effects or contraindications to the treatment.6 78

Most medications used for endometriosis patients who do not respond to standard treatments are not for FDA-approved reasons, though most of the evidence supports the safety and efficacy of those treatments in women with pelvic pain syndromes.9 Because of this, with bioidentical progesterone's safety and efficacy profile, my provider did not find it unreasonable at all to try it with me after multiple attempts at taking progestins with no luck. She now prescribes it for almost all of her endometriosis patients with great relief!

How can micronized progesterone be taken?

People usually take micronized progesterone in one of two ways: either every day or only during the luteal phase. You can take it orally or vaginally, depending on

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Because of this, a negative test does not always tell the whole story. Timing, the type of test ordered, and how the specimen was handled can all affect the result.

Many clinicians do not routinely evaluate mast cell activation syndrome. It can be helpful to come to your appointment prepared with questions, the names of available tests, and a plan for how testing will be collected when you are symptomatic.

This is easier said than done, so I’ve included scripts at the bottom of this article that you can literally bring to your appointment. I cover some of the most common scenarios: what to say if your doctor only wants to order tryptase, won’t order additional testing, your labs were negative, or you’re struggling to get your concerns taken seriously. I also include exactly which tests you can ask about, including options that may be less likely to miss mast cell mediator release.

Let’s Talk About Tryptase: It Is Only Part of the Picture

Because many clinicians were traditionally taught to begin the MCAS evaluation with tryptase, serum tryptase (a blood level of tryptase) is one of the most commonly ordered tests for suspected mast cell activation.

However, tryptase alone has some important limitations.

Dr. Joseph Butterfield at Mayo Clinic has published research examining urinary breakdown products of mast cell mediators, including leukotriene and prostaglandin metabolites, along with N-methylhistamine. In his patient cohorts, these urinary mediator metabolites appeared to identify mast cell activation more often than tryptase alone.1

Baseline tryptase levels can also be high for reasons other than MCAS.

Approximately 5% of the population carries extra copies of alpha-tryptase, resulting in a genetic condition called hereditary alpha-tryptasemia (HαT). People with HαT can have higher baseline tryptase, making test results harder to interpret.2

Mastocytosis can also cause a persistently elevated baseline tryptase. Mastocytosis is a different mast cell disorder and requires its own evaluation and management.

Timing Matters With Tryptase

If your doctor orders tryptase to check for mast cell activation, ideally you should have two blood draws:

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Honestly, I feel like SIBO is the endometriosis of the gut world (the endo girlies will get this). Even though there is a plethora of evidence-backed information out there about it, and fascinating research developments taking place every year... some providers simply either don’t believe it’s a “real” issue or they truly just lack knowledge about it.

You may really need to advocate for yourself if this is happening (and please comment on this article if you need help with that!) or find a different provider if possible. Utilizing Reddit or Facebook groups to connect with others who have SIBO in your area and asking if they have found a knowledgeable provider can sometimes be a good place to start.

Online coaches who specialize in SIBO are also an option. Personally, I went this route. I find specialized coaches to be so well-versed in the issue they treat, and incredibly up-to-date on the latest research and developments.

The other not-so-great situation I see happening is providers being open to treating their patients for SIBO, but not actually knowing how to do so properly. This leads us to #2.

2. Being started on any treatment without completing a proper breath test prior is not efficient, evidence-based care

I see it all too often where a provider suspects SIBO (or is willing to go along with your suspicion), but they just prescribe a round of Rifaximin (an antibiotic used in SIBO treatment, also known as Xifaxin) without having the patient do a proper breath test prior.

And this really frustrates me.

Treating SIBO has many nuances. Your treatment needs to be tailored to whether you have SIBO (Small Intestinal Bacterial Overgrowth), IMO (Intestinal Methanogen Overgrowth), ISO (Intestinal Sulfide Overproduction) or a combination of the three. They all used to be referred to as SIBO, but this distinction has recently been made into the three types (for ease, I - and many providers - will simply use the term SIBO when speaking about these conditions, but know that it refers to all three in that case). The second article in this SIBO series reviews these in more detail.

The Endo Navigators's Substack

SIBO Series #2: So You Have Endo & Wonder if You Have SIBO — Now What?

In post #1 of this series, we reviewed how ridiculously prevalent SIBO appears to be in women with endometriosis (this study showed 91.9% of women with endo tested positive for SIBO…

Read more

22 days ago · 1 like · The Endo Navigators

The basic concept is that SIBO, IMO, and ISO each reflect a different type of gas being overproduced by the bacteria/archaea in your gut.

The most accessible way to know which type you have is by doing a breath test, and this is essential because each type of gas overproduction requires a different, tailored treatment.

For example, the common situation we spoke of where providers will treat solely with Rifaximin may work quite well for people who have purely SIBO, but it would NOT be sufficient if you also have IMO or ISO. Those conditions require additional antibiotics and/or other medications (or antimicrobials) for treatment.

People often wonder why just popping some Rifaximin failed, and it’s because they have not been educated on this.

3. Breath testing can be (and is often) done at home - but which type you use matters

For my SIBO breath test, my coach ordered the SIBO with Lactulose breath test from Nordic Laboratories and it got mailed straight to my home. Because she ordered it, my results got sent to her so she could interpret and review them with me.

There was a reason she ordered this one specifically: doing a 3-hour breath test using Lactulose (vs. a 2-hour test, or a test that uses Glucose instead) is often provider preference among those well-versed in the SIBO space. Due to how these substrates are absorbed, there is concern that using Glucose for the test could result in some SIBO diagnoses being missed.

Now, TrioSmart is one of the most popular and most studied breath tests for SIBO and you can order it for yourself online, without needing a provider! It is also the only breath test available that tests for all three gasses (hydrogen - SIBO, methane - IMO, and hydrogen sulfide - ISO). Until recently, most tests only assessed for hydrogen and methane. Note: as far as I’m aware, it is currently only available in the USA, but they are working on expanding internationally.

It appears that True Health Labs also offers the 3-hour SIBO test with Lactulose, and that they ship to the USA, Canada, and Europe.

So, these are some viable options for SIBO diagnosis if you can’t find a provider who is willing to order a breath test for you.

4. Treatment is often not a “one-and-done” approach

Once you know whether you have SIBO, IMO, ISO, or a combination of the three, you can start to consider treatment options with your provider or coach.

Broadly speaking, there are 4 treatment routes you can choose to go down:

• Antibiotics - this leads to Dr. Allison Siebecker’s website. She is recognized as a leading expert in the SIBO field.

• Antimicrobials

• Elemental diet - the one I used was mBiota (article on my experience coming soon)

• Probiotics (this is a developing approach that is accruing more and more research)

There are pros and cons to all of the options, as with anything. Whichever option you choose is very dependent on you as a person and what other health issues and preferences you may have.

For example, not everyone likes antibiotics (and Rifaximin can be costly). Some people prefer a more natural approach with the antimicrobials, though people with MCAS may react a little more strongly to these. Both of these approaches often entail multiple rounds being needed, and re-testing in between or afterwards to see what your gas levels are doing (another thing I see providers skipping). This can take months - SIBO is a beast that takes time to tackle!

The Elemental Diet likely has the least side effects and can lower gas levels faster, but is very mentally taxing and generally not fit for anyone with a history of an eating disorder or a diagnosis of diabetes.

The probiotic approach may appeal to those who like to be very gentle on their gut, but it is still hotly debated in the SIBO space as an appropriate approach (I find the existing research to be quite compelling, though, so I think it is definitely worth considering).

Following the links above is a phenomenal place to start for educating yourself about all SIBO treatment options!

5. There is said to be a “high recurrence rate” for SIBO - but I wonder if a lot of that is really just SIBO not being properly treated the first time

That being said, once you ARE properly treated, then comes an equally important part of managing SIBO: maintenance, to prevent remission!

While clearing the bacteria and archaea in your small intestine and achieving a negative breath test is amazing, it isn’t the whole picture.

You’ll also need to be consider why your SIBO occurred in the first place. There are so many factors that might affect this:

• Previous food poisoning (a surprisingly common cause)

Food poisoning can cause our bodies to develop antibodies that essentially attack and impair our Migrating Motor Complex, leading to slow gut motility and enabling bacteria to build up and overgrow.

If you are interested in this, check out The IBS-Smart - it could help you identify if these antibodies are an issue for you.

• Slow gut motility (narcotic use, hypermobility, stress, etc.)

• Adhesions (endometriosis, previous abdominal surgeries, etc.)

• Abnormal anatomy

… the list goes on.

Without addressing your root cause, SIBO can be more likely to return, so digging into this and finding a maintenance strategy is very important.

This is done in many ways, depending on what your root cause is. This book dives deeply into this topic, as well as how diet can be used/approached to help reduce symptoms in people with SIBO, and I found it very helpful.

For example, if you have slow gut motility, a prokinetic is often used once your SIBO bacteria are cleared. This is a medication (or there are also natural options) that get the gut moving, with the idea that it will help prevent the bacteria from building up again.

I feel like each section above could be a whole article in itself, so please let me know which topic you’d like more information on and I can do further deep dives!

Hopefully, the resources provided in here will be a good jumping off point for you to begin educating yourself on SIBO and pursuing the proper treatment.

- Kat

Disclaimer: The information contained in this document is provided for general educational and informational purposes only. It does not constitute medical advice, diagnosis, or treatment, and does not create a provider-patient relationship. Your use of or reliance on any information provided in this document is solely at your own risk. For personal medical concerns, please always consult a licensed healthcare professional in your jurisdiction.

The experiences and opinions shared below belong solely to the individual commenters. We do not endorse, verify, or affirm any medical claims or advice shared in the comment section.

Links to Other Sites/Information: Our Site or Products may contain links to other websites, which are not affiliate links. These links are only provided for the user’s convenience. We do not endorse or verify the accuracy of the information contained on third-party websites accessed through these links. We in no way guarantee the quality of the third-party product or service and bear no liability with respect to such product, service or experience. Any questions or concerns regarding a third-party website or resources should be directed to the third-party. We bear no responsibility for any action or non-action you take associated with the third-party.

Then I had excision surgery.

Something my surgeon told me after the surgery really stuck with me. She said:

“One of the ways your endometriosis presented was as thick, plaque-like fibrotic adhesions all throughout your pelvis.”

She also mentioned that she usually saw this level of disease in women who were 45 to 50 years old. I was 29.

That finding, along with years of strange inflammatory symptoms, was one of the clues that led my doctor to consider mast cell activation syndrome.

My Symptoms

My skin was probably the biggest clue.

I would have:

• full-body itching

• hives

• eczema-like patches

• rosacea-like patches across my cheeks

I also had urinary symptoms. It often felt like I had a UTI.

My stomach was another issue. After eating, my abdomen would become hot, swollen, itchy, and inflamed. At the time, I thought all of these were separate problems.

One important thing I learned about MCAS is that it affects more than one body system.

To meet the Consensus 2 diagnostic criteria for MCAS, there needs to be abnormal mast cell activation in at least two organ systems. Symptoms can be chronic, triggered by certain things, come and go, or show up in different ways. I had both inflammatory and allergic-type symptoms in several parts of my body.

Why MCAS Can Look So Different From Person to Person

Mast cells are found all over the body.

They also release many different chemical mediators.

Since these chemicals can affect many tissues and organs, mast cell activation symptoms can look very different from one person to another.

Presentations may include allergic-type symptoms, flushing, gastrointestinal complaints, urinary symptoms, dysmenorrhea, menorrhagia, pain, autonomic symptoms, anxiety, cognitive symptoms, and abnormalities in tissue growth and development.

Symptoms can also come and go, move to different areas, or change over time. This variety is one reason why the diagnosis can be hard to recognize.

Endometriosis and MCAS

The Consensus-2 framework considers inflammatory, allergic, and dystrophic patterns.

Dystrophic patterns refer to problems with tissue growth and development, such as fibrosis.

My Stage 4 endometriosis showed up as thick, plaque-like fibrotic adhesions throughout my pelvis.

Again, my surgeon said she usually only saw this level of disease in much older patients. This added another clue to the overall clinical pattern.

As I mentioned in part 1, mast cells have been found in endometriosis lesions. The Consensus 2 diagnostic criteria even list endometriosis as a possible genitourinary sign of mast cell activation disease and talk about mast cells in relation to inflammation, pain, and neuroimmune signaling.

How I Was Tested

My doctor ordered both blood tests and urine tests.

She ordered:

• Mannose-binding lectin

• 2,3-DINOR-11β-Prostaglandin F2 Alpha

• Leukotriene E4

• Tryptase

• Histamine

Before the tests, I stopped taking my anti-inflammatory supplements and low-dose naltrexone for 72 hours. My doctor wanted to make sure these treatments would not affect the results.

I plan to write a separate article just about testing, since there’s a lot to cover about blood versus urine tests, timing, specimen handling, and the chance of false negatives.

My testing came back with a very high leukotriene E4 level.

Consensus-2 recognizes a range of potential mast cell mediators. The mediators listed include:

• tryptase

• chromogranin A

• heparin

• prostaglandin D2

• histamine

• N-methylhistamine

• 11-β-PGF2α

• leukotriene E4

Elevations of these mediators above their normal ranges can provide laboratory evidence of MCAS when they occur in the appropriate clinical context of otherwise unexplained chronic multisystem inflammatory, allergic, and/or dystrophic symptoms.

My Pattern Through the Consensus-2 Lens

Here is how I met the Consensus 2 diagnostic criteria and received my diagnosis. I had multisystem symptoms affecting my skin, gastrointestinal system, genitourinary system, and pelvis.

• I had allergic-type features: itching, hives, eczema-like patches, and facial inflammatory skin changes.

• I had significant inflammatory symptoms, particularly involving my skin, abdomen, urinary tract symptoms, and pelvic disease.

• I had dystrophic or tissue-growth features. My excision surgeon described extensive thick, plaque-like fibrotic adhesions throughout my pelvis.

My testing showed a markedly elevated leukotriene E4 level.

If You Think Mast Cells Might Be Part of Your Story

One of the most helpful things you can do is look for patterns across different parts of your body. Pay attention to what happens during a flare.

• Does your skin react at the same time your stomach does?

• Do urinary symptoms appear with other inflammatory symptoms?

• Do symptoms wax and wane?

• Do certain triggers seem to affect several systems at once?

• Do you have a long history of seeing different specialists for problems that have always seemed unrelated?

Keeping a journal of your symptoms can help you and your doctor see the bigger picture and aid in diagnosis.

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Disclaimer: This content is for general informational and educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment.
Always consult your healthcare provider. The experiences and opinions shared below belong solely to the individual commenters. We do not endorse, verify, or affirm any medical claims or advice shared in the comment section.

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SIBO Series #1: SIBO & Endometriosis - An Emerging Connection

Those of us with endometriosis (& adenomyosis) know all too well — or are really starting to realize — how many other conditions like to tag along for the ride…

Read more

a month ago · The Endo Navigators

With that in mind, if you have endo (or suspect you might), it’s not at all unreasonable to wonder if you have SIBO too. This matters because SIBO symptoms overlap heavily with endo symptoms — and treating it could be a real key to finally feeling better.

Before we get into when it makes sense to consider testing and how to go about getting a diagnosis, let’s cover what SIBO actually is.

What SIBO (and IMO and ISO) Actually Are

SIBO stands for Small Intestinal Bacterial Overgrowth. Essentially, it’s what happens when bacteria — or, in some cases, archaea — that don’t belong in your small intestine start overgrowing there.

These organisms “eat” and ferment much of what you consume, and that fermentation process produces gas. Depending on the type of bacteria involved, that gas can be hydrogen, methane, or hydrogen sulfide — and knowing which one you’re dealing with matters, since each aligns with different symptoms. Hydrogen and hydrogen sulfide tend to present as diarrhea, while methane more often shows up as constipation.

Recently, these overgrowth types have actually been renamed. Instead of lumping everything under “SIBO,” there are now three distinct names depending on which gas shows up on your breath test (more on that later):

• Hydrogen gas = SIBO

• Methane gas = IMO (intestinal methanogen overgrowth)

• Hydrogen sulfide gas = ISO (intestinal sulfide overproduction)

That said, you’ll still often hear practitioners refer to all three simply as “SIBO,” since the updated terminology is fairly new (also, many practitioners don’t know much about SIBO at ALL… hence why it’s important to educate and advocate for ourselves).

A really phenomenal book I just read by two of the top SIBO experts (Dr. Mark Pimentel and Dr. Ali Rezaie) breaks all of this down really well: The Microbiome Connection.

Why it’s Important to Consider SIBO if You Have Endo (and MCAS!)

So many of us with endo are just trying to feel like ourselves again. We try it all — surgery, supplements, pelvic floor physical therapy, EMDR, acupuncture — and while every one of these can genuinely move the needle, there’s a catch: if SIBO is quietly running in the background, we can do everything right and still not feel that much better. Not until that piece gets addressed too.

To review, the symptoms of SIBO can include bloating, abdominal pain, diarrhea, constipation, food intolerances, fatigue, brain fog, reflux, and even asthmatic-type symptoms. SIBO and MCAS can absolutely play off of each other as well, which I think may fascinate many of you, as a lot of us with endometriosis are also trying to get our MCAS under control.

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If You Have Endometriosis, You Should Know About Mast Cells

For as long as I can remember, I’ve dealt with all sorts of uncomfortable symptoms—eczema, hives, skin rashes, acid reflux, constipation, bloating, IBS, painful and heavy periods, low back pain, chronic UTIs, and more. Like many of you, I spent years feeling dismissed, told to just take birth control or switch brands, or to use more ibuprofen. None of i…

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a month ago · 3 likes · The Endo Navigators

According to this study, “Antibiotic therapy targeting bacterial overgrowth [SIBO] resulted in marked or partial improvements in most patients, highlighting SIBO as a potentially modifiable factor in the management of GI symptoms in MCAS”.

What Made Me Consider SIBO Testing

Even though I had laparoscopic excision surgery for endometriosis and a hysterectomy for adenomyosis three months ago, I hadn’t been seeing any changes in my endo belly. I was still experiencing really severe bloating every single day. My stomach would usually be mostly flat in the morning, and then throughout the day (after eating) it would increase to a level that was simply not normal.

It was incredibly uncomfortable. In addition to the bloating, I had been experiencing chronic constipation for a long time, and had recently started experiencing acid reflux symptoms. My intuition told me something was going on in my gut that wasn’t explained by endo. I’d heard about SIBO in the past, and decided to test for it.

What the Diagnosis Process Looked Like

The more I started reading and digging into SIBO, the more I realized that it’s complex, and I knew I wanted guidance when testing/interpreting results and then deciding on a treatment plan (as there are multiple ways to go).

I ended up hiring The Endo Belly Coach, who I believe is an incredible women’s health coach that specializes in both endometriosis and SIBO (and who knows a lot about MCAS, too!). She has been guiding me through the diagnosis and treatment process.

The gold standard for SIBO diagnosis is a breath test. Pro: they can be done at home! Con: they are also kind of expensive (I think mine was around $200 - my coach ordered it for me and had it shipped to my home).

You really just follow the instructions included. Basically, the day before, you eat a specific prep diet (mostly eggs and meat products) as SIBO bacteria do not really break those foods down. You then do a 12 hour overnight fast, and start testing in the morning.

You drink a solution (there are several types, but both my coach and Dr. Mark Pimentel (SIBO expert) prefer Lactulose. This is a sugar substance that SIBO bacteria love to eat up and ferment.

Then, every 20 minutes for the next 3 hours, you blow into little tubes. Once you complete that, you mail the tubes off and get your results back in a week or two. Here’s what mine showed:

If you have a coach, they can help you interpret the results. If you don’t, this website is an incredible resource put together by another top SIBO expert, Dr. Allison Siebecker. She has countless podcasts as well that break down both testing and diagnosis.

Basically: my results show I am positive for both Hydrogen (SIBO) and Methane (IMO) and therefore need to treat for both of those!

The Impact My SIBO Diagnosis Has Had on My Health Journey

Getting a positive SIBO diagnosis was incredibly validating. Instead of just wondering why the heck my endo belly wasn’t changing, I now have another explanation for my bloating, fatigue, constipation, and brain fog.

I am mid-treatment, and can’t wait to share that process and the results with you in another post (coming soon)!

Please comment with any questions you may have, and I’ll answer to the best of my ability or connect you with informative resources!

You can also follow my SIBO Series over on Instagram @theendonavigators where I’ll be sharing more visuals of the testing and treatment.

- Kat

Disclaimer: The information contained in this document is provided for general educational and informational purposes only. It does not constitute medical advice, diagnosis, or treatment, and does not create a provider-patient relationship. Your use of or reliance on any information provided in this document is solely at your own risk. For personal medical concerns, please always consult a licensed healthcare professional in your jurisdiction.

The experiences and opinions shared below belong solely to the individual commenters. We do not endorse, verify, or affirm any medical claims or advice shared in the comment section.

Links to Other Sites/Information: Our Site or Products may contain links to other websites, which are not affiliate links. These links are only provided for the user’s convenience. We do not endorse or verify the accuracy of the information contained on third-party websites accessed through these links. We in no way guarantee the quality of the third-party product or service and bear no liability with respect to such product, service or experience. Any questions or concerns regarding a third-party website or resources should be directed to the third-party. We bear no responsibility for any action or non-action you take associated with the third-party.

As a nurse, I started researching everything I could, and what I found actually gave me hope. Getting diagnosed with endometriosis brings up so many questions: What if I never feel better? Will surgery help my pain? Will I need more surgeries? Will I ever eat what I want without a flare? Can I enjoy vacations or dinners with friends without regret? The uncertainty can feel overwhelming.

But learning about mast cells and how they form a feedback loop with endometriosis was a relief. It helped put into more context the plethora of symptoms I experience, and it gave me a missing link to explore besides just birth control or surgery.

So, what are mast cells, and what is mast cell activation syndrome?

Mast cells are immune cells that live in your tissues instead of your blood. You can find them in your skin, gut, lungs, bladder, uterus, vulva—almost every organ. They’re the ones that cause swelling and itching during allergic reactions, but that’s just one of their many roles. Mast cells are packed with granules full of histamine, tryptase, prostaglandins, cytokines, growth factors, and many other substances. They release these in response to a wide range of triggers. When mast cells are activated, they can create ongoing inflammation by releasing histamine, cytokines, and other pro-inflammatory chemicals.1

Mast cells aren’t always harmful—they actually play important roles in the body. They help with normal growth and development, bone remodeling, embryo implantation, wound healing, and more when they’re working properly.

Mast cell activation syndrome (MCAS) happens when these cells are triggered too often and for no real reason, releasing their chemicals again and again over the years. 2 Dr. Lawrence Afrin, an expert in this area, describes MCAS as having three main features: ongoing inflammation in many body systems, sometimes with allergy-like symptoms, and sometimes with unusual growth or development in different tissues. Does that sound familiar to anyone else with endometriosis?

Mast cells have estrogen (estradiol) receptors on their surface. They also have receptors for progesterone, testosterone, and insulin, among others. So mast cells are immune cells that listen and respond to your endocrine system.3

So how does this relate to endometriosis?

• We know that estrogen is one of the drivers of the growth of endometriosis lesions/tissue 4

• Studies show that mast cells are highly prevalent in endometriotic lesions (endometriosis tissue) 5

• Estrogen directly activates mast cells via estrogen (estradiol) receptors on the surface of the mast cells.6

• Estrogen also directly activates mast cells inside those lesions. 7

• When mast cells are activated, they release histamine and fibroblast growth factor 2 (FGF2), among other things. Histamine makes nerve endings more sensitive, which causes pain. FGF2 helps cells grow, divide, and survive, and it also helps form new blood vessels in tissue. This means that if mast cells are always active in endometriosis lesions, it leads to ongoing inflammation, fibrosis, adhesions, and scarring. 8

• When nerve endings become more sensitive, it can lead to central sensitization. This means the neurons in your spinal cord become more responsive and release more neurotransmitters. As a result, your nervous system becomes more efficient at producing pain.

• And as mentioned earlier, endometriosis tissue is estrogen-sensitive. Which brings us back to my first point…

This creates a positive feedback loop: estrogen activates mast cells, which increase pain and inflammation. The inflammation and growth factors help the tissue survive and grow, and the tissue continues to respond to estrogen.

The symptoms that were never “just endo”

Endometriosis and MCAS have such similar symptoms that it can be hard to know where one stops and the other starts. 9 Below are common symptoms of MCAS:

• Flushing, hives, unexplained itching, eczema

• Nausea, reflux, bloating, abdominal pain, unpredictable bowel changes (diarrhea)

• Fatigue, brain fog

• Depression, “body anxiety” (a wired-and-anxious feeling that comes on physically rather than emotionally)

• Lightheadedness, racing heart, blood pressure changes

• Sensitivities to foods, alcohol, fragrance, medications, supplements

• Painful periods, painful urination, heavy periods

So what did I do with this information?

Knowing there’s another important factor involved in my health gives me hope. It’s more than just facing more surgeries or having doctors push contraceptives and synthetic hormones. Learning how to stabilize my mast cells has made a big difference in my pain and symptoms. In my next MCAS series posts, I’ll share more about my journey with endometriosis and mast cells—how I was tested and diagnosed, the medications and supplements I use, lifestyle changes that help, how MCAS overlaps with other common conditions, and how to find a doctor who can help with MCAS.

And come say hi on Instagram @theendonavigators — where we share loads more about how to navigate endometriosis, and its co-conditions!

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Disclaimer: This content is for general informational and educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment.
Always consult your healthcare provider. The experiences and opinions shared below belong solely to the individual commenters. We do not endorse, verify, or affirm any medical claims or advice shared in the comment section.

POTS, MCAS, hypermobility, pelvic congestion syndrome, low ferritin, ADHD — the list goes on. We're planning dedicated series to dig into each of these here on the Substack!

But I'm starting with the one I'm knee-deep in myself right now, freshly diagnosed and mid-treatment, because I don't think it's on nearly enough people's radars: SIBO.

SIBO stands for Small Bacterial Intestinal Overgrowth (you may also see it referred to as IMO - Intestinal Methanogen Overgrowth). It is, essentially, when bacteria that are not meant to be in the small intestine end up there and take over, causing symptoms. It can be the culprit behind bloating (!!!), fatigue, brain fog, stomach pain constipation, diarrhea, and nutrient deficiencies.

Sound familiar, endo girlies?

I, myself, experience all of the above - and was unsure if the symptoms were coming from my endo, my SIBO, or both (I’ll dig into how I decided what to tackle first and how I got diagnosed with SIBO later in this series!).

That being said, the worst of my SIBO symptoms is, by far, the bloating.

I will include pictures of my poor belly for you all, so you can see if you relate. I never thought these would make it out of my camera roll (lol) but I will do anything in the name of helping others with endometriosis!!

Here’s what my stomach often looks like when I wake up (hi laparoscopy scars):

And by the end of the day, I end up here (honestly, wtf):

I feel like the vast majority of us with endo are aware of and struggle with endo belly/boating, which can have many different causes. But fascinating, recent data suggests that this bloating may be (at least partially) due to SIBO in a huge percentage of us:

High prevalence of small intestinal bacterial overgrowth and intestinal methanogen overgrowth in endometriosis patients: A case-control study

This study showed 91.9% of women with endometriosis tested positive for SIBO!!

91.9% is crazy, guys. And what’s even crazier is that SIBO hasn’t even been MENTIONED to a lot of us.

So - enter: this SIBO series.

Because of the large amount of information there is to go over, I wanted to address each piece methodically for anyone struggling with SIBO and/or endo belly. I plan to go over:

• What SIBO (and IMO) are

• The overlap with endo

• How to approach getting diagnosed - especially if dealing with practitioners who aren’t well-informed about SIBO and endo

• Options for treatment

• My personal story and how I decided which treatment to use

• My treatment progress (I am currently in the middle of it - fingers crossed for success!)

This is just chapter one. I'll be back with more on my SIBO journey, both the good and the messy parts, and how I’m navigating it all 3 months after laparoscopic excision surgery for endometriosis and adenomyosis.

If this hit home for you at all, come along for the rest of the series. You deserve answers, not just more questions.

And come say hi on Instagram @theendonavigators — where we share heaps more about how to navigate endometriosis and it’s co-conditions!

- Kat

Disclaimer: This content is for general informational and educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment.
Always consult your healthcare provider.

The experiences and opinions shared below belong solely to the individual commenters. We do not endorse, verify, or affirm any medical claims or advice shared in the comment section.