My Journey with Endometriosis

If you’re reading this, my journey with endometriosis might sound familiar to you. Either because you also have endometriosis, or because you’ve followed my struggles with this disease over the past few years.

Today I’m sharing my complete journey (so far) with endometriosis, because a lot has changed since I originally shared how I received my endometriosis diagnosis. I’ve kept that post updated, and it is still the best place to look if you have questions about the process to diagnosis. But… little did I know when I woke up from my diagnostic laparoscopy… diagnosis is just the beginning.

The last few years have been difficult, when at times it felt like endometriosis was taking over my life. But I have learned SO much and really found my voice as a patient advocate, because nobody deserves to go through their endometriosis journey alone. In this post, I’m sharing a timeline of my journey with endometriosis, plus tons of practical information and resources for anyone else dealing with endometriosis.

My endometriosis journey is far from over. I’m currently waiting to schedule my excision surgery at the Center for Endometriosis Care (more on that further down!). I will keep this post updated after my next surgery!

my journey with endometriosis, sarah sitting in front of mirror in endo shirt in black and white

Seeking a Diagnosis

Research shows it can take 7-10 years to receive an endometriosis diagnosis. This is due to a lot of factors, but medical misinformation, under awareness of endometriosis’ wide range of symptoms, and an epidemic of doctors not believing women’s pain all have a lot to do with it.

It is hard to pinpoint when my own endometriosis symptoms began, because I have other health issues and endometriosis symptoms can arise slowly and mirror other conditions. Personally, it was 2016/17 during grad school when my symptoms got so bad that I could no longer live my day-to-day life. I had chronic constipation and bowel impaction, lasting 12 days or longer (for which a doctor once advised me to “drink more water”). Fatigue, bloating, and pelvic pain were also symptoms.

I spent 2017 searching for a diagnosis like a full-time job, and even moved back from the UK to the USA to access faster medical care. Mostly I saw gastroenterologists, due to my symptoms. I trialed many medications. I had every diagnostic test under the sun…all with no definitive answers.

At this point, my local gastroenterologist recommended a bowel resection (where part of my colon would be cut out). I was shocked, and vividly remember sobbing in my car for an hour after this appointment. I STILL had no diagnosis, yet they were going to cut out my colon? It was at this moment that I took things into my own hands.

If you want the full story behind how I got my endometriosis diagnosis, read this post.

IMPORTANT | Endometriosis occurs when tissue similar to the tissue that lines the uterus grows outside the uterus. It is not the same tissue, and this is a very important distinction when seeking effective care for your disease.

Diagnostic Laparoscopy for Endometriosis

After that wakeup call, I decided my health was my responsibility, and I needed to do research myself if medical professionals were failing me. This is a philosophy I carry with me to this day.

On a whim, I googled endometriosis and bowel symptoms. I was aware of endometriosis because my mom has it, but I’d only ever associated it with “bad periods” or infertility. I had NO idea at that time that endometriosis is a full body disease that has been found on every organ including the brain, lungs, heart, and spleen!

I found the article “Endometriosis and irritable bowel syndrome: a dilemma for the gynaecologist and gastroenterologist” by Dr. Ken Sinervo at the Center for Endometriosis Care, and finally made the connection that endometriosis could be what was causing my constipation, pain, and other symptoms.

So… I had my first surgery for endometriosis because I literally walked into my doctor’s office in 2018 and asked for it. Looking back, I am so sad for 2018 Sarah, who received such little support from medical professionals that she had to do this herself.

Because endometriosis can ONLY be diagnosed via surgery, I had my first surgery for endometriosis just a few days later. During that surgery, many endometriosis lesions and adhesions were found.

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Symptoms Recurrence

I did not receive a lot of support after my first surgery for endometriosis. After getting my diagnosis, I was told that my symptoms would likely recur and I would need another surgery in a couple years. Luckily I wasn’t told to have a hysterectomy, have a baby, go on OCPs, or any number of insensitive and false advice that is too often given to patients with endometriosis. Still, I couldn’t believe that I was expected to live with this cycle for the rest of my life.

But I couldn’t deny – I felt amazing after my surgery! It was like my symptoms had come on so gradually over the years, that I’d forgotten what it was like to not be in pain. During the first six months after my surgery, I got back in the gym, took my board exams, and even climbed to freaking Everest Base Camp.

Not for long.

About eight months after my surgery, my symptoms came back with a vengeance. Except, in addition to chronic constipation, I now found myself with absolutely debilitating pelvic pain. Chances are, you might be familiar with this.

Pain that pushed me to fetal position on the ground, multiple times a day. Pain that made me pass out. Pain that made me pull over on the freeway due to fear for my life, and eventually limit my driving. Pain that made me sob, have to walk with a cane certain days of the month, and prevented me from working full time. This pain was worst during my period, but happened all month long.

I knew that something was really wrong. I knew that my endometriosis had come back.

Endometriosis Education: Why Learning Endo Facts is SO Important

Clearly, my surgery with my local gynecologist had not been very successful if my symptoms returned after just eight months. I needed to find out if there was a better solution.

I joined the Nancy’s Nook Endometriosis Education facebook group, which I highly recommend to anyone who has endometriosis. The admins of this group have collected evidence-based information about endometriosis. Many top endometriosis surgeons in the world are also in this group, so I quickly began learning. (Keep in mind if you join that this is not a support group, but an education group).

Through this group, I learned that the vast majority of general OBGYN doctors are NOT equipped to treat endometriosis. Endometriosis education is sorely lacking in medical school, and a doctor who is also delivering babies and acting as a primary care doctor does not have the expertise to treat a disease that requires a surgery as complex as cancer surgery.

I also learned that during my diagnostic laparoscopy, my surgeon had used an outdated form of treatment called ablation. During ablation, a surgeon burns endometriosis lesions. However, this only treats the surface portion of the endometriosis, which often infiltrates deeper into organs and continues to cause inflammation and pain.

A more advanced surgical technique, excision, is the gold standard of care. During excision, a skilled surgeon cuts endometriosis out by the root, so it is completely gone. Think of this like weeds in your garden – obviously, you want to pull weeds up by the root instead of just burning the flower.

Research backs up the effectiveness of excision over ablation in reducing symptoms longterm, and reducing number of additional surgeries ever needed. This is a really good resource to read more about excision vs. ablation and the complexities of this issue.

my journey with endometriosis excision v ablation
Photo credit: NW Endometriosis

Seeking an Endometriosis Excision Specialist

I knew that my next surgery would need to be excision, if I truly wanted to get my life back and end this cycle of pain and surgery. The huge problem is that very few doctors are qualified to perform excision surgery to treat endometriosis. And seeing an expert is essential, because endometriosis has many different appearances, and a non-expert may not recognize all lesions (meaning pain would continue).

Nancy’s Nook has a file of vetted surgeons that perform excision, have good patient outcomes, and have answered questions demonstrating their deep knowledge of endometriosis.

I Care Better is another resource for finding qualified excision surgeons. This is a third-party vetting system where surgeons pass an exam, and submit videos of their surgery technique that are then judged by other expert surgeons from around the world.

Due to the impartial judging, I Care Better is the best existing system for finding the most skilled excision surgeons in the world. The issue is that it is still new, so there are fewer I Care Better approved surgeons than “Nook” surgeons.

Luckily (or so I thought) for me, there was one surgeon in Michigan, where I live, who was BOTH I Care Better and Nook approved. He had many positive patient reviews, was regarded as an expert in treating endometriosis, and was only an hour from my house!

excision surgeons for endometriosis venn diagram
Photo credit: NW Endometriosis

The Struggle to get Endometriosis Excision Surgery In State

This part of my endometriosis journey was arguably the toughest for me (so far… I hope I haven’t just jinxed myself). I felt so close to the finish line, in that I knew I needed to have excision surgery to treat my endometriosis. But things just KEPT GOING WRONG! Maybe if you have a chronic illness, you can also relate.

After five months on his wait list, and almost two full years after my diagnosis, in July 2020 I met with Dr. H, our endometriosis specialist in Michigan. I was so nervous for this appointment, after being gaslit by so many doctors over the years, but I had nothing to worry about. Dr. H had incredible bedside manner, radiated knowledge in a very humble way, and I trusted that I was finally in the care of an expert.

Dr. H recommended excision surgery, and put me on his wait list. Sadly, a few weeks later I received a phone call that Dr. H had to go on medical leave. (Well, relatable, much?) I hope absolutely nothing but the best for this doctor who has helped so many. But of course, I was left with a decision. I decided to remain on Dr. H’s waitlist until he returned from medical leave, because he was the only expert surgeon in my state, and my insurance would not cover surgery out of state.

Well, delay after delay occurred, and after waiting seven months on his wait list (during which my symptoms worsened), in late February 2021 I learned that Dr. H made the decision to retire. His office has been nothing but supportive in helping me transition and get referrals, but I will also say that this was truly devastating to me. I think both facts can exist at the same time.

Seeking an Endometriosis Excision Specialist…Again

In March 2021, I felt like I was back at the drawing board, but I had way less options this time. All of the expert surgeons that Dr. H recommended were out of state. If you are also from the USA, you know this opens a massive can of worms regarding insurance coverage.

After dedicating an entire day to research my insurance coverage, I decided that this time, I needed to cover my bases. I would reach out to surgeons both out of state and in-state.

I found a surgeon in Michigan who had positive patient reviews for performing excision, but was not on the Nook list or I Care Better approved. I decided to give him a shot, because he accepted my insurance. I used this resource on “what to ask when choosing a doctor for your endo care” to create a list of questions. I did see this doctor, twice, and he recommended excision surgery with him. However, he gave me MANY red flags that indicated he was not, in fact, an expert.

Simultaneously, I started looking for expert surgeons out of state. This quickly became overwhelming. I decided to send my records to The Center for Endometriosis Care in Atlanta, Georgia because they have two of the top excision surgeons in the world and they have a free records review. If I was going to go through the struggle of getting surgery out of state, I might as well go with the best, right? I knew that I would be in good hands at the CEC, if they accepted my case.

Records Review at the Center for Endometriosis Care

After waiting six weeks, in late April 2021 I received a phone call from Dr. A from the CEC to review the records I had sent. I was extremely impressed by Dr. A, who spoke to me on the phone for 45 minutes and let me ask every single question under the sun. He meticulously went through my photos from my previous surgery, identifying endometriosis lesions that had been missed, and anatomical variations that could indicate more endometriosis that wasn’t found due to an incomplete evaluation at my first surgery.

My case was officially accepted at the CEC for excision surgery this summer. I thought long and hard about what to do next. Should I go with the far-away expert that would cost thousands but also gave me the best chance of getting my life back and never having surgery again? Or should I go with the in state surgeon who says he performs excision and is 100% covered by insurance, but gave many obvious red flags, and might lead to an inevitable delay to more surgeries down the line?

Obviously, by my language, you can tell that I’ve chosen to go to the CEC. It will be extremely expensive, but as I’ve been counseled by my loved ones, what is the price of my quality of life? I am blessed to be able to afford the surgery, although it will be a struggle. But ultimately money in my bank account is not worth continuing to live with this pain. There is a huge amount of privilege in that statement, and this whole unfair experience has shown me how inequitable care for endometriosis is. I am only able to get this surgery due to the privileges I have, and honestly that is not humane. Our medical system is f*cked 🙂

Next Steps on My Journey with Endometriosis

What are the next steps on my journey with endometriosis? Well, I’m currently waiting for the call to schedule my excision surgery at the CEC.

In the meantime, I’m using all my coping tools that I learned during pelvic physical therapy, catching up on other health issues that I let fall by the wayside, and doing gentle exercise when I can to try and get “in shape” for my surgery so that the recovery is easier. I’m just taking it one day at a time!

Tools That Help me Cope with Endometriosis

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Educational Resources For Your Own Endometriosis Journey

I will keep this blog post updated after my surgery, and as my endometriosis journey progresses. This is a lifelong disease but right now I’m feeling very hopeful for what’s ahead.

Have questions about living with endometriosis and seeking treatment? Feel free to leave them below!

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my journey with endometriosis

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