In this article, I share my bowel endometriosis story and how I finally got a diagnosis after years of pain. There are many of us with bowel endometriosis stories and as you read, I hope you feel solidarity from someone else who’s been through the struggle, too.
A few years ago, I was waking up from a diagnostic laparoscopy surgery between the starchy sheets of a Michigan hospital bed. Above the overwhelming nausea and the muzzy anaesthesia brain, I was given my results: endometriosis. Specifically, adhesions and bowel endometriosis.
Endometriosis is a chronic illness: There is no cure, and it is progressive. Doctors don’t know exactly what causes it. But what was the feeling that came over me when I heard the verdict? Relief.
“If you desire healing, let yourself fall ill.”
I searched for answers to my symptoms for so long – years really, but in the months leading up to my first endometriosis surgery, I treated my search for a diagnosis like a full time job.
I had needles poked in my back and barium enemas and X-rays and radioactive pills and allergic reactions and ridiculously restrictive diets and at one point, a literal balloon stuck up my bum (this is called a manometry… it wasn’t fun).
I had to drive long distances for medical appointments at specialist facilities like the University of Michigan Taubmann Center – scratch that, I had to have family drive me because I wasn’t in any shape to get myself home after the procedures.
So to get a diagnosis, an answer, even an incurable one? I can work with that.
What is Endometriosis?
Before I go into my personal health journey and bowel endometriosis story, you should know a little bit about the condition. It will be easy to keep this section brief, because not nearly enough research has been done on endometriosis (despite roughly the same number of people having it as have diabetes).
Endometriosis occurs when tissue similar to the tissue that lines the uterus grows outside the uterus. This causes chronic inflammation, internal bleeding, irritation, autoimmunity, estrogen dominance, and more.
Symptoms can include intense pelvic pain, radiating nerve pain, heavy and painful periods, diarrhea, constipation, painful bowel movements, chronic fatigue, migraines, nausea, infertility, and so much more.
The only way to diagnose endo is through surgery, and although there are ways to treat its symptoms, it cannot be cured.
One in 10 people born with a uterus have endometriosis. Yet the utter lack of awareness and research on it could be why it takes on average 7-10 years to get a correct diagnosis. (I have a lot to say about that figure in relation to the patriarchy of the medical system and how women’s bodies have been medicalized historically #ThanksForNothingFreud)
How I got Diagnosed with Bowel Endometriosis
Grab yourself a cup of tea or coffee and sit down for a long story, friends.
‘Are you sure it isn’t in your head?’
‘Just drink more water.’
‘Well nothing showed up on your tests so you must be fine.’
‘It’s just IBS. Everyone has that.’
These are just a few things I heard (and said to myself) before my diagnosis. And I cannot portray how painful each of them is when you are truly suffering, but unable to find an answer to why you are suffering. Are you making it all up?
One thing that helped me cope with this isolation and frustration is sharing my health journey on my blog and on Instagram, which is why I’m writing this today – I hope I can give some solidarity and insight to others going through something similar.
I have struggled with my health since a young age, but after my doctor told me I had celiac disease in 2012, and I went on a strict gluten free diet, many of my symptoms dissipated.
Unfortunately four years later, in 2016, I started developing new digestive symptoms.
My primary symptom was constipation: I experienced constipation for 7-12 days at a time, for months in a row. This caused me so much emotional distress.
It also caused me internal bleeding, bleeding and pain with bowel movements, chronic fatigue, lower abdominal pain, nerve pain shooting into my legs, bloating, distention, acne, anemia, vitamin deficiencies, memory loss, and more.
I didn’t even consider tracking my symptoms alongside my cycle, because that was so irregular (sometimes being on my period for over a month at a time).
I feel that it is very important to mention that this was all very difficult to deal with as someone in her early 20s.
Unfortunately, I went from a girl who loved to travel, take risks, adventure, do yoga and run, and yes to go out partying and dancing with friends. To go from this energetic person to someone who could only eat one bite before bloating up like a 9-month pregnant person, or having one pint of cider on a night out and spending the rest of the night in pain and miserable, suffering the consequences for days afterward… it was horrible.
The Search for a Diagnosis: Irritable Bull…I Mean Bowel Syndrome
Naturally, on my search for a diagnosis, I was focused on my digestive system and so were my doctors. However both my colonoscopy and Sitz Marker Test came back mostly normal, ruling out Crohns, Colitis, and Chronic Intestinal Pseudo Obstruction.
As a result, my gastroenterologist told me I had Irritable Bowel Syndrome (IBS). IBS is the worst kind of diagnosis. It is a diagnosis of exclusion… basically, if your doctor can’t easily figure out what’s wrong with you, they throw you in this ‘waste basket’ diagnosis.
Two people can have IBS but have completely different pathologies and therefore different diseases. It felt like my doctors were giving up on me because my case wasn’t easy for them to solve.
Nevertheless… there are definitely some proven treatments for IBS, so this is what I turned to. First, under a dietitian’s guidance, I did the Low FODMAP diet, a miracle for those with IBS. My constipation and other symptoms only got worse.
Then my gastroenterologist cycled me through three IBS-C medications (Linzess, Trulance, and Amitiza). These are all extremely strong IBS medications yet they had no effect on me even at their highest dosages (apart from Amitiza, which gave me an allergic reaction).
At this point I went back to my gastroenterologist, crying for help. I couldn’t possibly have IBS if nothing for IBS helped me, could I?!
Nothing so far had done anything for my symptoms and they were getting worse. I was so tired I could hardly stand my part time job, and even though I was living with my parents I was exhausted each day.
Everything I ate caused me bloating and constipation. My pain was never my “main” symptom but I started having these intense lower abdominal pains, that is best described as a particularly spiky sea urchin slowly rolling through my organs.
Onto the Gastroenterology Specialists…
Out of her depth, my local gastroenterologist referred me to the specialists at University of Michigan, one of the very best gastro centers in the USA.
It was here that I had my manometry and defecography diagnostic procedures. These (painful, invasive) tests found that I had diminished pelvic muscle tone, and a rectocele (a prolapse of the colon typically due to childbirth or, in my case, chronic constipation).
I went back to my local gastroenterologist with these findings, wondering why do I have a rectocele? Why do I have low muscle tone?
These just seemed like further symptoms of a larger problem, and not a solution in and of themselves. All my gastroenterologist did was refer me to pelvic physical therapy, and warn me that if physical therapy didn’t work, then we would go ahead with the bowel resectioning… AKA chopping off part of my intestines.
This was probably the lowest point of my entire journey. I cannot tell you how many doctors parking lots I sat in my car in, sobbing. Often, I felt like nobody wanted to get to the bottom of my problems, they just wanted to drug me up or chop up my insides.
I began to wonder if I was really sick? Was this all in my head? Based on how sick I felt, shouldn’t my doctors be taking my concerns more seriously? I was hopeless and felt like I was the only one fighting for my health, and I was too exhausted to continue.
A Good Doctor Changes Everything…
It was around this time that a miracle happened. My normal primary care doctor retired and I got a new one in the same practice, Dr. Liz.
Dr. Liz is the best primary care doctor I’ve ever had. She is open minded, she listens, and above all she advocates for me. Really, isn’t this what the role of any doctor should be? Yet I’d never experienced that until I met her.
I should probably mention at this point that through this whole journey, I was completely aware of endometriosis. My mother and grandmother both had severe endo.
Sometimes when I mention this to people now, they ask me “why didn’t you ask about this sooner? Why didn’t you do anything?”. This attitude of shaming and blaming the patient (me, in this case!) is hugely problematic, but so common when it comes to endometriosis.
To explain why it took so long for endometriosis to come up, though, I’ll explain. I was trying to solve digestive problems, not reproductive problems.
Much of the media and gynecologists’ limited education on endometriosis consists of “it’s just a bad period.” This is what I thought endo was. And because (at that point) I didn’t have the horrible periods typical of endometriosis, I didn’t consider it for years.
I figured that I’d deal with endometriosis when and if I ever wanted to have children, because another thing endometriosis is often reduced to is its symptom of infertility.
I did mention endometriosis to my gastroenterologist once and they just said “yeah but we would have found that during the colonoscopy” and brushed it off (which, I’ve learned…. this is SO not true! Endo grows outside organs, not in them. The only endometriosis that would show up in a colonoscopy is deep infiltrating endometriosis at an extremely advanced stage).
When IBS is Actually Endometriosis…
Faced with the prospect of a bowel resectioning, I turned to my friend Google Scholar.
Having stumbled across the article “Endometriosis and irritable bowel syndrome: a dilemma for the gynaecologist and gastroenterologist.” I think my jaw actually dropped. I did another quick search which led me to this speech by Dr. Ken Sinervo at an Endometriosis Foundation conference called “When IBS is Really Endometriosis on the Bowel.”
Bolstered by my findings, I went into Dr. Liz. I presented my theory to her, the fact endometriosis runs in my family, and asked her to help me.
If my gastroenterologist was considering resectioning my bowel, then at the very least I deserved to have one final thing investigated, right?
From here, everything went very fast. Dr. Liz not only agreed my theory was worth investigating, but she personally went to a gynecologist in her practice and argued my case to her. I think this made a huge difference in my journey because, unfortunately, most doctors are more likely to listen to each other than to their patients.
A week later, I walked into my OB/GYN appointment and was told the only way to diagnose endo was via surgery. Forty minutes later, I was scheduled for a diagnostic laparoscopy surgery in five day’s time.
My final diagnosis of bowel endometriosis
The surgery confirmed that I do have endometriosis – but it’s more complicated than that (as I’ve learned, things usually are with endometriosis). In addition to endometriosis implants, my intestines were, in my surgeon’s words, ‘massive and inflamed.’ They also found adhesions.
Adhesions are membranous scar-like tissue that grow due to inflammation, injury, or infection. They are very common for people with endometriosis because the endometriosis itself irritates the surrounding tissue.
My surgery revealed that both my ascending and descending colons were completely wrapped in adhesions, both constricting them and ‘gluing’ them to my inner abdominal wall. The surgeons removed the adhesions, freeing my intestines.
My OB/GYN explained all of this (along with photos, that I will refrain from posting on the internet) at my post-op appointment. She said she had no idea if the endometriosis was causing my digestive symptoms and only time could tell.
At the point of that appointment, nine days post-op, I was still drugged up on painkillers, in pain, and couldn’t tell any difference besides the fact I had two new holes on my belly.
The only thing I knew for sure was I had a diagnosis: endometriosis.
RELATED | My Journey With Endometriosis
How I’m Doing Now: 4 Years Post-Diagnosis
This whole post was very emotional for me to write – to relive the struggle and the frustration and the hopelessness. But perhaps even more emotional is for me is to look back on the months and years since my diagnosis.
In the years since I first wrote this post (just six weeks after my diagnostic surgery), this article has become one of the most popular on Endless Distances. Thousands of endo warriors have discovered it and felt connection through my story, and I am so grateful to provide that.
Through it all, I have kept this article updated as my journey with endometriosis was far from over with my diagnosis. In fact, diagnosis was just the beginning. Below you can read updates from my recovery from diagnostic surgery, all the way to my cross-country journey to the Center for Endometriosis Care for my life changing excision surgery.
Six weeks post diagnosis: Feeling Amazing
At six weeks post op, I felt good.
About two weeks post-op I noticed something: I wasn’t in pain. And I don’t mean operation-related pain.
I realized that I had been living with every day pain for I don’t know how long, and it only took not having it to realize it had been there in the first place. I had grown so resigned to my daily pains that I didn’t even consider them my primary symptom.
As for my primary symptom? My stomach was no longer bloated after everything I ate, things were ‘flowing smoothly’ so to speak. I could go to work and actually have leftover energy to function afterwards.
I wrote this six weeks post-op, when I originally published this blog post:
“Each day that goes by, I am more and more sure that endometriosis was the key in a locked door I have been running at head-on for years on end.
I am honestly tearing up as I write this. It has only been six weeks of this optimal health, but already I am afraid it won’t be forever. I know endometriosis is an incurable, progressive condition.
Although my adhesions and endo implants were removed during surgery, they will likely return. I just hope I can be one of the lucky people to experience years of health before a second surgery is required.
Endometriosis is something I will be dealing with for the rest of my life and I want to learn how to live that life well, and alongside it, instead of against it.”
Six months post op: Everest Base Camp
I became more familiar with my endo symptoms, what a flare felt like, and what triggered a flare. Overall, I felt so much better than I had for years before my diagnosis. I attended a weekly pelvic physical therapy session and was fully committed to it. I slowly got back into exercising because I’d set myself a goal…
Six months after waking up in the hospital bed with my endometriosis diagnosis, I hiked to Everest Base Camp in Nepal!
This was a hugely emotional experience for me, looking back on how far my body had come in such a short time. Before my surgery, getting out of bed was challenging – not to mention high altitude trekking! I began seeing my body, and the pain I’d experienced, in a positive light for the strengths it had given me.
Unfortunately, that’s not the end of the story.
1.5 Years Post Op: The Endo Returned Even Worse
I first updated this blog post in 2020 as it had become very popular, and unfortunately around this time my symptoms returned and my journey with endometriosis took a turn for the worse.
Sadly, as we know, endometriosis is a chronic illness – meaning there is no cure. Just one year after my endometriosis surgery I began experiencing health set backs that I believed were due to recurring endometriosis.
What I learned is that the type of surgery I had, called ablation, was an outdated form where the endometriosis lesions are burned off rather than cut out. The gold standard of endometriosis treatment is excision, a type of surgery where the endo is cut out from the root.
With excision, there is an extremely low recurrence rate and people can usually avoid the stories of multiple painful endo surgeries in their lifetime. Unfortunately, only very specialized gynecologists can perform this surgery.
I learned this information after joining Nancy’s Nook Endometriosis Education, which is a group on Facebook. I would encourage you, too, to join this group and read up on all the materials there.
2 Years Post Op: The Search an Excision Specialist
At this point, I went through the long and difficult process of finding an excision specialist to perform my next endometriosis surgery. I did not want another failed surgery.
As you can probably tell if you read the whole post above, I had a lot of medical trauma from all the invasive procedures and gaslighting I experienced. So the process of finding an excision specialist – which took me to three surgeons, and involved a seven-month surgery waitlist only for my chosen surgeon to retire, beginning the search from scratch, and finally deciding to make the expensive leap for the Center for Endometriosis Care in Atlanta, Georgia – was essentially an experience of re-traumatization.
But I pushed through this trauma because I could not emotionally or mentally handle my life continuing to revolve around endometriosis and the endless painful symptoms that worsened every day.
RELATED | My Journey With Endometriosis
3 Years Post Op: My Second Endometriosis Surgery
Just shy of three years after my diagnostic laparoscopy, I flew with my parents to Atlanta, Georgia for a life-changing excision surgery with Dr. Arrington of the world-renowned Center for Endometriosis Care.
During that surgery I once again had endometriosis found on my bowels: in my sigmoid colon, rectum, rectovaginal space, and appendix. I even had my appendix removed because it was riddled with endo. In addition, endo was found other places including my bladder, uterus, and sidewalls.
I don’t believe this endometriosis grew back since my diagnostic surgery. I (and my surgeon) believe it was there the whole time and was just missed in my first surgery.
I’ve written more about my experience at the CEC in this article about preparing for surgery at the CEC, and this article about what to expect on the day of surgery.
4 Years Post Op: One Year in Endometriosis “Remission”
I’m writing this in November 2022, just over one year after my successful excision surgery for bowel endometriosis, and four years since my diagnostic surgery when I first published this post.
I am SO HAPPY to say that (at least so far) this second surgery was a success. I am completely endo symptom free for the first time in years, and I feel like a different person.
I truly believe that if I hadn’t had this surgery with Dr. Arrington, I would still be suffering with endometriosis to the point that I would be disabled, unemployed, and very physically as well as mentally unwell.
Instead, today I’m fulfilling a lifelong dream of traveling the world full-time with my partner. Before we left for our trip, I drove across the USA twice, and worked as an occupational therapist in two states (a very demanding, physical job that I struggled deeply with due to endometriosis). All in the one year since surgery.
Having bowel endometriosis was the most challenging thing of my life, and it changed so much about me. But one thing I’ve learned is to always fight for myself, trust my gut, and live life to the fullest because our quality of life is not guaranteed.
RELATED | How to Prepare for Endometriosis Surgery
Moving Forward: What’s Next for My Health and Endometriosis Journey?
A diagnosis is just the first step in a long health journey. Although endo cannot be cured, there are ways to treat and manage its symptoms. Surgery and removal of endo is obviously the first step (and preferably, this is excision surgery not ablation surgery like what I had).
Monitoring my endometriosis has become a way of life for me. I’ve tried to balance a more natural approach, free of artificial hormones or awful awful drugs like Lupron, with a medical approach such as trialing (safe) medication.
I found this balanced approach helped me tune in to my symptoms and triggers in the early stages, and has helped me identify recurring symptoms over a year later.
Here are some things I did (and do) to manage endometriosis:
- Educated myself in Nancy’s Nook facebook group
- Switched to using Thinx period underwear. Yep, it’s weird at first, but totally improved my experience on my periods. They really work and help my bleeding anxiety a lot. You can use my link for $10 off your first pair.
- Read Ask Me About My Uterus a memoir by Abby Norman
- Read Endometriosis Health and Diet Program by Dr. Andrew Cook and adopted some of the philosophies
- Practice yin yoga, hiking, barre, swimming, and other lower impact exercise
- Started taking RainbowLight Women’s One multivitamin to prevent recurring vitamin deficiencies
- Started taking this magnesium citrate powder nightly to help with bowel movements
- Bought an infrared heating pad to help reduce pain when on my period (I like this kind because it’s more portable)
- Committed to pelvic physical therapy
- Practice self myofascial release I learned in physical therapy (I spray this magnesium oil first before massaging my adbomen).
- Trialed muscle relaxant drugs for pain relief (this failed as they made me too sleepy to function!)
- Trialed Motegrity, a new constipation medication, which I currently still take at 2mg. I started this because my digestive symptoms returned.
- Rub Doterra Deep Blue natural pain relief over my abdomen and other painful areas which really helps!
- Give myself permission to rest when I need it
- Biweekly therapy to help cope with the mental health effects of living with chronic illness
The Next Big Step in My Endo Journey:
As I mentioned, sadly since I initially wrote this post my endometriosis symptoms have come back. I am happy to say, though, that as of late 2021 I finally had excision surgery with a “Nook-approved doctor” – Dr. Arrington at the Center for Endometriosis Care. I am waiting a little longer to see my response to surgery, and then I will write a blog post update!
If you join the facebook group I mentioned above, you’ll find a list of approved endo specialist surgeons who can perform excision surgery.
Before I close, I want to provide some amazing resources on endometriosis that have really helped me on this wild, horrible journey.
Endometriosis research centers
- Nancy’s Nook facebook group – an education-based facebook group with lists of approved excision surgeons
- The Endometriosis Summit – the largest patient and practitioner endometriosis gathering in North America
- Sallie Sarrel Pelvic Physical Therapist – she is a PPT who has endo herself and is an expert on endo care!
- Endo Black – best support and resource group out there for Black women with endo. They have a great facebook group and ambassador community
- Endometriosis UK
- Endo What?
- Mine is Endless Distances – I share about endometriosis, travel, gluten free food & daily life.
- Endo Girls Blog
- In 16 Years of Endo – she also has an amazing podcast
- Life Above Endo
- Friend with Endo
- Chronically Ill Millenial
- Endo Adeno Warrior
Join in the conversation.
An immense thank you to anyone who has read through this entire post. I tried to shorten it but I also didn’t want to minimize the journey I’ve been on, and that anyone with an undiagnosed chronic illness experiences.
But it’s not just about ME and MY disease though. Having any illness can feel incredibly isolating. Especially if you are traveling which is already a challenge to health. If you have a story to share, please feel welcome to do so in the comments below or on my Instagram.