My Bowel Endometriosis Story: How I Finally Got a Diagnosis

on November 14, 2018

Just over a month ago, I was waking up from 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 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.”

-Rumi

I have been searching for answers to my symptoms for so long – years really, but these past eleven months I have been treating my search for a diagnosis like a full time job. I’ve 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’ve had to drive long distances for medical appointments at specialist facilities like the University of Michigan Taubmann Center – scratch that, I’ve had to have family drive me because I would be in no shape to get myself home after the procedures.

So to get a diagnosis, an answer, even an incurable one? I can work with that.

Many doctors aren't aware that IBS can actually be bowel endometriosis. This is my bowel endometriosis story, and the long journey to a diagnosis. #endometriosis #chronicillness #bowelendometriosis #ibs #health #wellness

Smiling before surgery, like a maniac.

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 much is actually known about endometriosis.

Endometriosis occurs when tissue similar to the tissue that lines the womb grows on other organs. This causes chronic abdominal inflammation, internal bleeding, irritation, autoimmunity, estrogen dominance, and more.

Symptoms can include intense pain, heavy and painful periods, diarrhea, constipation, 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 women have endometriosis. Yet the utter lack of awareness and research on it could be why it takes women on average 8-10 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’ve heard (and said to myself) this year. And I cannot portray how painful each of them are 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 online 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.

A few months ago I shared an update on my health journey, which you can read if you want more specifics. If you read that post you know that my primary symptom was constipation: I experienced constipation for 7-12 days at a time, for 3.5 years. This caused me so much emotional distress. It also caused me internal bleeding, bleeding with my bowel movements, chronic fatigue, lower abdominal pain, 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).

(Just a note at this point to say… this was all very difficult to deal with as someone in her early 20s. 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 woman, or having one pint of cider on a night out and spending the rest of the night in pain and miserable, suffering the consequences the next week… it was horrible.)

Many doctors aren't aware that IBS can actually be bowel endometriosis. This is my bowel endometriosis story, and the long journey to a diagnosis. #endometriosis #chronicillness #bowelendometriosis #ibs #health #wellness

Okay in this photo you can see the fear in my eyes a bit better 😛

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 at home 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 gastro 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, extreme chronic constipation).

I went back to my local gastroenterologist with these findings, wondering why do I have a rectocele? Why do I have poor 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, and it was only a couple months ago. I cannot tell you how many doctors parking lots I sat in my car in, sobbing. 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?  I was hopeless and felt like I was the only one fighting for my health, and I was too exhausted to continue.

Many doctors aren't aware that IBS can actually be bowel endometriosis. This is my bowel endometriosis story, and the long journey to a diagnosis. #endometriosis #chronicillness #bowelendometriosis #ibs #health #wellness

Waiting to be brought in for surgery. I braided my hair because I wouldn’t be able to shower/reach up to brush my own hair for days post operation.

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 an angel and the best 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. However, I was trying to solve digestive problems, not reproductive problems. And I didn’t have the typical debilitating pain or horrible periods. I figured that I’d deal with endometriosis when and if I ever wanted to have children, when I faced that big shadow of infertility. I did mention endometriosis to a gastroenterologist once and they just said “yeah but we would have found that during the colonoscopy” and brushed it off (which, I’ve learned…. not true! Endo grows outside organs, not in them)

When IBS is actually endometriosis…

Faced with the prospect of a bowel resectioning, I turned to my friend Google Scholar. I 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.

Many doctors aren't aware that IBS can actually be bowel endometriosis. This is my bowel endometriosis story, and the long journey to a diagnosis. #endometriosis #chronicillness #bowelendometriosis #ibs #health #wellness

wish I knew who to credit for this photo but…. relatable, much?

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.’ But the most important finding was adhesions. Adhesions are membranous scar-like tissue that grow due to inflammation, injury, or infection. They are very common for people with endometriosis. 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.

Many doctors aren't aware that IBS can actually be bowel endometriosis. This is my bowel endometriosis story, and the long journey to a diagnosis. #endometriosis #chronicillness #bowelendometriosis #ibs #health #wellness

It is difficult to tell from the shadows in this photo, but I was very swollen/bloated post operation. In fact I gained 10lbs from the surgery gas and more, which quickly went away after a week or so.

How I’m doing now: Six weeks post-op

This whole post has been very emotional for me to write – to relive the struggle and the frustration and the hopelessness. But perhaps even more emotional is for me to say:

Right now, I feel 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? Well, I’m happy to report things are ‘flowing smoothly’ so to speak, which feels like a supernatural phenomenon after every unsuccessful laxative, enema, diet, medication, and more I’ve had these past few years.

My stomach is no longer bloated after everything I eat. I can go to work and actually have leftover energy to function afterwards. People have seen me and say I’m ‘glowing.’

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 four 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.

Many doctors aren't aware that IBS can actually be bowel endometriosis. This is my bowel endometriosis story, and the long journey to a diagnosis. #endometriosis #chronicillness #bowelendometriosis #ibs #health #wellness

A few days post operation, my stomach was not quite as swollen but it was still very painful to walk, reach, and lean forward or back.

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. There are also bio-identical hormones, drugs that induce temporary menopause, and analgesia. For now I’ve decided to try a more natural approach, as my body heals from surgery and I become more familiar with what it needs.

This is my current plan:

  • Pelvic Physical Therapy: I start in December.
  • High quality supplements: I am seeing a clinical nutritionist who has recommended specific, personally targeted supplements based on my blood test results. Funnily enough, these supplements line up with those recommended to people with endo.
    • Probiotic – Endo inflammation destroyed my gut, but I’m rebalancing my flora with high quality dairy-free probiotics targeted to reduce constipation.
    • Magnesium Citrate – This is my hero in helping reduce constipation. It’s my #1 supplement. It’s also super important to have a high quality brand because I’ve remained magnesium deficient on other brands.
    • AdvaClear – An iron-free daily multivitamin that is high in B vitamins (very important for endo and reducing fatigue), and great for healing the liver
    • Non-constipating Iron – Most endo patients are anemic, including me. I take iron in liquid form to reduce its constipating effects.
    • Liquid Vitamin D – Liquid form makes Vitamin D easier to absorb for those with compromised gut lining. Also this tiny bottle lasts forever.
  • Candida Diet: With my clinical nutritionist I am working to heal a candida yeast overgrowth (found via blood test). I think probably a lot of people have candida due to our Western diets, and there isn’t a ton of research on it, but eating a sugar free, low inflammation diet and taking anti-fungals for a month can only help.
  • Heal food intolerances: My blood tests showed food intolerances to random things like bananas, garlic, melon, peanuts, eggs, dairy, avocado, brewer’s yeast, and more. I cut these foods out for nine weeks to ‘drain the antibodies’ as my clinical nutritionist says, and will slowly start reintroducing them!
  • Reduce sugar intake: If endo is the devil then sugar is the flames of hell, yo. After the candida diet I will reintroduce sugar but eat much less of it.
  • Gluten free: It bears mentioning here that I will obviously continue to eat gluten free, as I have for the last eight years. I will never know for sure if I have celiac because eight years ago my previous doctor had me do an elimination diet rather than testing me outright, and now I cannot reintroduce gluten without becoming incredibly ill (you need gluten in your system to be tested for celiac). Endo is linked to autoimmune conditions like celiac so this is just another puzzle piece pointing toward celiac. I treat my body and lifestyle like I have celiac but very sadly I will never know for sure.
  • Squatty Potty: Everyone needs one of these in their life. Optimal pooping position ftw.
  • Reduce my toxic load: Studies show endo is worsened by presence of toxins and pesticides in the liver. I am trying to eat more organic veg and grass-fed meat, and switch to clean beauty brands such as my fave Cloverdale Organics.
  • Go to therapy, damnit: I will be starting therapy in December to work through the emotional stress of this whole journey.
  • Lavender epsom salt baths: I find these so relaxing and they reduce my muscle and joint pain.
Many doctors aren't aware that IBS can actually be bowel endometriosis. This is my bowel endometriosis story, and the long journey to a diagnosis. #endometriosis #chronicillness #bowelendometriosis #ibs #health #wellness

Casual pool reading this past week. You can see one of my incision scars in the left corner… healing up so well!

Endometriosis resources

Before I close, I want to provide some amazing resources on endometriosis that have really helped me this past month.

Endometriosis books

Endometriosis research centers

Endometriosis blogs/Instagrams

Join in the conversation with #wellandwidely

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.

As for the blog, looking into the next year I will be sharing more health content alongside travel. 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.

That’s why I am starting the hashtag #wellandwidely to start a community and conversation around living, and traveling, well and widely. Here, we can share our experiences, our tips, and most importantly solidarity. I will be sharing tagged posts weekly on my Instagram stories.

THANK YOU FOR READING!! <3

Sarah xx

Shop this post…

Pin it for later…

Many doctors aren't aware that IBS can actually be bowel endometriosis. This is my bowel endometriosis story, and the long journey to a diagnosis. #endometriosis #chronicillness #bowelendometriosis #ibs #health #wellness

*This post contains some affiliate links. If you click on these links I may make a small commission, at no extra cost to you. I have only linked to products I actually use and recommend. Thank you for supporting Endless Distances.

You may also like