I‘ll always remember the day I began my interval. I used to be simply 10 years outdated, and I used to be so scared I would carried out one thing incorrect that I hid my stained underwear in my closet. At that age, I did not know something about menstruation. When my mother came upon, she was shocked it occurred so early.

It was additionally the start of one other journey for me, though I did not comprehend it on the time: a decades-long battle with endometriosis and its debilitating signs.

Since that very first interval, I’ve handled a heavy circulate and agonizing cramps. Once I reached my early teenagers, issues bought worse. I would spend days doubled over in ache, fleeing to a heat bathtub once I might for reduction. By my early 20s, I started getting what I assumed had been recurring UTIs, and I’d maintain onto the bathroom as I peed, clenching in ache.

After which there have been the bowel actions: Every one felt like somebody was tearing one thing out of my left aspect. I would break right into a sweat and should lie down within the bathe afterward to calm myself down. Nausea would hit due to the ache, and different days, my abdomen would bloat to the purpose that I regarded pregnant.

Even after telling my docs that my mother had endometriosis (I would watched her undergo the identical actual signs), it took a complete of seven docs over the span of 14 years for me to get an official dual-diagnosis: endometriosis and interstitial cystitis (also referred to as bladder ache syndrome). Up till that time, all I would ever heard from docs was “nothing’s incorrect with you,” and “that is only a regular a part of being a lady.”

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And it wasn’t till after my first surgical procedure for endometriosis that I noticed my situation and my raging intestine signs had been very carefully intertwined.

How endometriosis impacts the intestine

Most of what you see about endometriosis in mainstream media has nothing to do along with your intestine. However the fact is, dwelling with endometriosis can take over each facet of your life and well being—intestine well being included.

Actually, the fourth basic symptom of endometriosis (after irregular durations, painful durations, and painful intercourse) is irregular bowel actions and gastrointestinal misery, based on The Endometriosis Basis of America. This will embrace extraordinarily painful pooping in addition to constipation, diarrhea, and bloating, normally throughout menstruation.

These signs are normally an indication that endometrial tissue (which normally traces the uterus and sheds throughout menstruation) has grown on the intestines or bowel.

Frustratingly, intestine points from endometriosis could seem like signs of intestine circumstances like irritable bowel syndrome (IBS), Crohn’s illness, or appendicitis. However for those who’re an individual with a uterus, endometriosis ought to be thought-about as a possible trigger. (Although it usually is not—no surprise, then, that it takes seven years on common to get a correct prognosis, with 6 in 10 circumstances of endometriosis going undiagnosed, per a Might 2023 evaluation in Cureus.)

“Endometriosis may very well be the main reason behind your GI points, or perhaps a contributor to your signs and ache,” says Amanda Chu, MD, a board-certified minimally invasive gynecologic surgeon at Seckin Endometriosis Heart (and one of many surgeons who operated on me throughout my second surgical procedure).

She notes that seeing a gastroenterologist about GI points is a good suggestion, particularly in the event that they’re your main concern, however: “If their testing is inconclusive, do not allow them to simply diagnose you with IBS,” she says. “I would be extra more likely to suspect endometriosis as, in lots of circumstances, it would not seem in routine testing.”

For me, bowel points had been a prime concern. After my first surgical procedure in 2018 (an ablation, the place endometrial tissue is burned off on the floor of sure organs, however not totally eliminated), I used to be left with horrible GI points like irregular bowel actions, continual constipation, and stomach ache. Fortunately, my second surgical procedure with Tamer Seckin, MD, a board-certified OB/GYN, endometriosis specialist, and founding father of The Endometriosis Basis of America, and Dr. Chu, introduced some intestine reduction.

In the end, for those who’ve been identified with endometriosis (or are nonetheless ready for a prognosis) and your intestine points are taking on your life, let your care workforce know. Advocating for your self and listening to what’s actually occurring in your physique is the one manner get applicable therapy for endometriosis-related intestine points (and for the situation normally).

Had I not sought out specialists like Dr. Seckin and Dr. Chu, I do not know the place I would be right this moment besides (almost definitely) bedridden and nonetheless trying to find solutions.

Advocating for your self and listening to what’s actually occurring in your physique is the one approach to get applicable therapy for endometriosis-related intestine points.

5 intestine points which will truly be indicators of endometriosis

Bloating (aka, “endo stomach”)

Whereas not a medical time period, “endo stomach,” or stomach swelling, is a typical symptom of endometriosis. It might final for hours, days, or weeks, trigger discomfort and ache, and may even make you look pregnant or severely swollen. Medical doctors do not actually know the particular reason behind this symptom, however they consider it has to do with irritation and hormone adjustments, per the Cleveland Clinic.

“Endometriotic lesions (i.e., endometrial tissue) rising near the bowel or on the bowel itself could cause GI points like bloating,” says Tiffany Pham, MD, OB/GYN and medical advisor at Flo Well being.

Increased-than-usual ranges of the hormone-like substance prostaglandins (which is typical for folks with endo) can even have an effect on the bowels and their functioning, provides Dr. Pham.

Not everybody with endometriosis will get “endo stomach,” however for those who do, it might have bodily and psychological well being results, like low shallowness and physique picture points, based on a September 2022 article within the Worldwide Journal of Behavioral Drugs.

Belly ache (and painful bowel actions)

That is yet one more hallmark symptom of endometriosis, which might really feel like stabbing or cramping ache in your decrease stomach. For me, ache comes and goes relying on what I eat, whether or not I am on my interval, and different elements like stress.

Folks with endometriosis could have fixed stomach ache or pelvic ache, which frequently worsens throughout menstruation, per UCLA Well being. This implies endometriosis might trigger stomach ache that’s not all the time essentially related along with your menstrual cycles.

One other time this stomach ache could spark up? While you’re attempting to have a bowel motion. (Extra on this beneath.)

Constipation

Many individuals with endometriosis have continual constipation, per The Endometriosis Basis of America, particularly in case your lesions are near your cul-de-sac (space between the uterus and rectum) or rectum. I nonetheless take care of constipation post-surgery, however I principally consider it is as a consequence of my interstitial cystitis meds.

“The factor with girls’s anatomy is that every one components are situated in the identical zip code, so to talk,” says Morgan Allyn Sendzischew Shane, MD, gastroenterologist and director at UHealth Girls’s Well being Alliance. So when you’ve got decrease stomach points or pelvic ache, it could possibly be intestine, urinary, or reproductive-related—all types of issues, she provides.

Dr. Shane says hormones like estrogen and progesterone can impact intestine motility, i.e., how usually you “go.” Because of this, folks with endometriosis could have extreme constipation or diarrhea alongside ache, bloating, and nausea, she provides.

Diarrhea

Endometriosis can even have the reverse impact on intestine motility, leading to diarrhea. Earlier than my second surgical procedure, anytime I ate a very inflammatory meal (like one with crimson meat or dairy), or was going by a period-related flare, I’d get extraordinarily painful diarrhea.

As soon as once more, that is doubtless as a consequence of prostaglandins. Whereas anybody who will get a interval could discover themselves pooping extra usually round their time of month (aka, the interval poops), the probabilities are even larger in these with endometriosis, as they usually produce larger ranges of prostaglandins, says Dr. Pham.

Mainly, the uterine contractions felt throughout your interval (because of prostaglandins) can have an effect on your close by intestine, particularly if in case you have endometrial tissue rising in your intestines.

Nausea and vomiting

Some folks could really feel barely nauseous round their interval, however for these with endometriosis, the insufferable ache might trigger them to full-on throw up. For those who’re throwing up (or consistently really feel such as you’re on the verge of it) round your interval due to the ache, this can be an endometriosis crimson flag. I would usually throw up once I had different excessive bowel points occurring, like diarrhea.

Whereas nausea can occur as a typical PMS symptom for these with out endometriosis (as a consequence of hormone adjustments, per Nemours TeensHealth), nausea and vomiting with endometriosis are normally as a consequence of ache, per the Endometriosis Basis of America.

How you can inform the distinction between endometriosis and non-related intestine points

“Endometriosis generally impacts the intestine, inflicting gasoline, bloating, diarrhea, constipation, and painful and even bloody bowel actions,” says Dr. Chu. “Sadly, these signs are additionally nonspecific to endometriosis.”

One approach to inform the distinction? Take note of the timing of your signs. In the event that they correlate along with your menstrual cycle, they’re doubtless linked to endo.

Dr. Chu says you must also verify whether or not you’ve got hallmark endometriosis signs not associated to the intestine, together with:

• Heavy menstrual bleeding
• Dysmenorrhea (painful durations not totally relieved by meds)
• Painful intercourse
• Unexplained infertility

“These would assist level a affected person within the course of a main gynecologic challenge,” she provides.

How you can handle gut-related endometriosis signs

Not everybody with endometriosis could have intestine points. Actually, 20 to 25 p.c of individuals with endometriosis are asymptomatic—also referred to as silent endometriosis, based on a 2010 evaluation within the Journal of Assisted Copy and Genetics.

That stated, for those who do have gut-related signs, there are some things you are able to do to assist handle them—whether or not or not you have had surgical procedure on your endometriosis. This is what the specialists suggest:

Preserve a meals diary

This may increasingly really feel tedious whenever you’re coping with excessive ache, however belief me, understanding which meals trigger your intestine signs to flare up may be extraordinarily helpful.

“Sadly, there isn’t any particular weight-reduction plan to suggest to endometriosis sufferers; we have now to understand that everybody’s intestine microbiome, genetics, and surroundings is exclusive,” says Dr. Chu. “I’d urge folks to begin a meals diary to know their private signs.”

Dr. Chu additionally recommends attempting to chop again on meals generally recognized to trigger abdomen upset, like caffeine, alcohol, processed meals, and meals excessive in refined sugar, to see if that helps.

Rule out any underlying GI issues

Seems, it is doable to have endometriosis and a separate GI dysfunction on the identical time. Actually, folks with endometriosis are at a 3 times larger danger of growing concurrent GI circumstances like IBS, says Dr. Pham.

That can assist you distinguish between a GI challenge and endometriosis, it could be useful to see a gastroenterologist—particularly in case your intestine points occur recurrently and intervene along with your day by day life. They will run checks (like stool samples, blood checks, colonoscopies, or CT scans) to slender down the trigger and deal with it correctly.

Assemble a workforce of health-care professionals

Top-of-the-line issues you are able to do for your self is to assemble a workforce of docs who can present complete care and assist. My workforce consists of a urologist and two endometriosis specialists who work collectively to assist me handle my signs and supply me the absolute best care. Your workforce could look completely different, although, and will embrace primary-care docs, OB/GYNs, gastros, and even registered dietitians.

“It is necessary to get a workforce on board who’s there to deal with your issues,” says Dr. Shane. “That usually begins with specialists with whom you’re feeling snug speaking all of your signs, and who’re conversant in endometriosis.”

From there, your workforce will help deal with your signs one after the other, whether or not they be bodily, psychological, and even emotional.

When to see a health care provider

If you have already got endometriosis and your intestine points are getting extra intense, let your physician know. They will refer you to a gastroenterologist, or suggest surgical procedure to ease endometriosis signs. For those who’ve already had ablation surgical procedure (like I did), ask your physician about excision surgical procedure, the place they take away as a lot endometrial tissue rising exterior the uterus as doable.

In case your physician is not listening to your issues, do not be afraid to get a second opinion. That is what I did, and fortunately, my new workforce took me critically and carried out the excision surgical procedure. I nonetheless take care of the occasional constipation, however total, my intestine well being has considerably improved since that surgical procedure.

And at last, if you have not been formally identified with endometriosis however assume you’ve got it, speak to your physician. If they do not hear or take you critically, write down all of your signs, together with intestine points, then schedule an appointment with a health care provider who focuses on endometriosis to debate your issues.

The underside line

Endometriosis can undoubtedly trigger GI points, and people could usually be the primary warning signal (other than painful durations) that one thing could also be off. As a result of endometriosis continues to be a largely misunderstood (and underdiagnosed) situation, it is necessary you encompass your self with the proper sort of assist—together with a workforce of medical professionals that may tackle all completely different features of the illness.

In different phrases, do not simply go to an OB/GYN; they’re usually not skilled within the complexities of this situation. Discover an endometriosis specialist, for those who can.

And bear in mind: For many individuals, myself included, it takes a number of years to get an official prognosis. Do not be afraid to face up for your self alongside the best way, and to proceed to advocate on your care.

If you wish to discover a specialist however aren’t positive the place to begin, listed below are some free on-line sources that may assist: