My Endometriosis Story

I was diagnosed with stage 2 endometriosis after years of suffering. In this post, I share how I went about getting a diagnosis as well as what I am doing to manage my symptoms.

---

Endometriosis is a systemic inflammatory condition where tissue similar to the lining of the uterus (endometrium) grows on other parts of the body. It is thought to affect up to 1 in 10 women, and it can take an average of 9-10 years to be formally diagnosed. The condition is usually graded as stage 1 through stage 4, with stage 1 representing few lesions that are superficial, and stage 4 representing many deep infiltrating lesions/cysts that may distort the pelvic anatomy. It's important to note that the stage of your endo does not equal the severity of your symptoms. Someone with stage 1 endo could experience severe debilitating pain, and someone with stage 4 may have few to no symptoms.

The symptoms of endometriosis (or "endo" for short) vary from person to person, and each case is unique. The most common symptoms revolve around pain: pain during your period (often severe), pain with sex, and pain between periods (e.g. during ovulation). Other symptoms of endo include: chronic pelvic pain, nausea/vomiting, pelvic floor dysfunction, severe painful bloating (called "endo belly"), fatigue, pain with urination or bowel movements, heavy periods or clotting, constipation or diarrhea, nerve pain, back pain, muscle spasms in the pelvic floor, rectal pain (especially during period), and infertility.

Let's Get Into It

I always thought my endometriosis story began in March 2021, shortly after I had stopped hormonal birth control. My periods had returned and were regular now, but they were becoming increasingly painful. March 2021 was the first time I remember being debilitated by my period pain. Thinking back, I actually experienced symptoms that could have been related years before that time, but I just never knew it was endo.

I remember it very well. I was in college, and I had an exam that afternoon. I had woken up early to study with a friend over the phone; I also noticed that I had started my period. I tried to stay focused and study as planned, but eventually, I couldn't. The pain was becoming too much, and I started to get nauseous. I remember crying to my friend about how worried I was that I wouldn't be able to make it through the exam like this. I could barely sit up straight, let alone sit through and focus on a two-hour exam.

From then on, the pain only got worse.

Each month seemed to bring more pain and symptoms than the last, and I was starting to get concerned. By June 2021, my periods were consistently miserable, and I decided to mention it to my primary care provider at my annual visit. "It's normal," she said. "Some women just have painful periods, and we don't really know why."

I left that appointment in tears, told the only option to manage my symptoms was hormonal birth control. Of course, I knew better...

---

Over the next few months, I graduated college, moved across the state, and began working. All the while, I continued to do my best to manage my increasing pain and symptoms on my own with lifestyle changes. Unfortunately, my symptoms did not respond very well.

The stress and nature of my job seemed to worsen my symptoms significantly. I worked long hours and had to be on my feet for much of the shift. Eventually, I started to notice a new symptom: pelvic pain outside of my period. It started out as every once in a while, but it slowly turned into a daily occurence.

I new this was definitely NOT normal, so I decided to take matters into my own hands. In October 2021, I began seeing a pelvic floor physical therapist, and after a quick assessment, she told me that I had a hypertonic pelvic floor (a.k.a. my muscles were too tight/tense at rest). We decided to work together 1-2 times each week to relax and strengthen my muscles and hopefully correct my issue.

Meanwhile, my period symptoms were still severe, and with pain now affecting me daily, I was concerned (and rightfully so). Logically, my symptoms should have responded to the lifestyle changes I had been doing, but they weren't. At this point, I knew something deeper was going on, and I strongly suspected endometriosis was to blame.

It was time for a second opinion.

The next month (Nov. 2021), I found a women's health practice run by midwives, and I hoped they would be more open to what I had to say.

During my appointment, I explained all the symptoms I was experiencing, but I didn't tell her that I suspected endo. I wanted to her opinion to be unbiased, and I felt that this was the best way. I told her about the severe period pain, the cramps, the back pain, the pelvic floor issues, and the times where the pain would make me feel faint or throw up. I'll never forget what she told me when I was finished.

"You sound like you could be on a commercial for endometriosis."

Cue the tears :)

It was the first time my symptoms were validated by a healthcare provider, and I was so relieved she didn't brush me off as "normal". I told her that I was not interested in taking hormonal birth control, and I knew the gold standard for diagnosing endo was a laparoscopy. Initially, she did try to dissuade me from surgery and suggested birth control instead. Had I not done my research prior to the appointment, I might have been persuaded, but I knew what I wanted for my body, and birth control was not it. I asked her to write me a referral to an endometriosis specialist, and she agreed.

Working w/ an Endo Specialist

A few months later (Feb. 2022) and it was time for me to meet my endo specialist for the first time. I was full of nerves, scared that he would say I did have endo, but also scared he would say I didn't (going back to square one seemed terrifying). I went to the appointment, notes in hand, and did exactly as I had done with the midwife. I explained my symptoms, when they started, what part of my cycle they affected, and how severe they were.

I remember sitting in the office, feeling my heart beat so hard inside my chest. I wanted answers so badly, and I didn't want to be dismissed. At the end of the appointment, he gave me the news: from his perspective, it was highly likely that I had endometriosis.

I felt relieved, and also afraid...

He recommended we do an internal ultrasound to look for any obvious lesions, but warned me that endo often does not show up on scans. If the ultrasound came back clear, that did not mean that endo was ruled out. The only way to know for sure was through surgery.

I went ahead with the ultrasound (which did end up coming back clear), but I decided to hold off on surgery for the time being. I wanted to give my body a chance to manage the symptoms through lifestyle changes. We agreed to follow-up every three months and make a decision later on.

For eight months, I did my absolute best to improve my symptoms through lifestyle changes. I ate a primarily whole foods diet, cooked most of my meals at home, and focused on incorporating anti-inflammatory foods whenever I could. I practiced gentle exercise like yoga and walking whenever I could tolerate it. I went to pelvic floor physical therapy religiously. I cycle-synced herbal teas to support my cycle phases. I used heating pads and tens units. I continued going to talk therapy and journaling to help process my emotions.

I did everything I could...and I was still in pain.

I felt defeated. Why wasn't I seeing results despite all the work I was putting in? I felt like I was living in a never-ending cycle of pain and frustration. Each month, my period would cause a massive flare-up of my pain symptoms, and it would throw my body and pelvic muscles into a lot of tension. The tension lead to more pain. Once ovulation came around, I would have another flare. More tension, more pain, more frustration. The luteal phase seemed to offer a respite from the pain, but it didn't last long. Eventually, it would be time for my period again, and the cycle would just repeat...

It was seriously affecting my quality of life: physically, mentally, and emotionally.

I wanted answers, and definitive ones. I wanted to know if endo was the cause of all this pain or not, and I wanted my pain and experiences to be validated. So, at my September 2022 follow-up appointment, I told my specialist I wanted to go through with surgery.

Surgery, Results & Recovery

The day of my surgery was quite possibly the most validating day of my entire life.

On November 14th, 2022, we confirmed that I had stage 2 endometriosis and potential adenomyosis (a condition similar to endo, but where lesions grow into the uterine muscle itself). My endo lesions were found exactly where I had suspected them to be based on my pain and symptoms. The news felt like a simultaneous mix of relief and sadness.

I was thrilled to have an answer for all my pain and suffering, but I knew that simply having that answer didn't mean the journey was over. Endometriosis is life-long and incurable; it's a chronic illness. The surgery was only a temporary fix. I knew that the road ahead would be long and difficult, and that felt heavy.

Thinking back over my symptoms, it seems obvious that endo was to blame. I was a textbook case really. It's honestly astounding to me that women (like myself) will present with such clear signs and still be dismissed and told there's nothing wrong. Below, I've compiled a list of all the symptoms I experienced prior to my surgery:

• Severe cramping during period

• Severe back pain during period

• Severe pelvic pressure during period

• Nausea & vomiting from pain

• Feeling faint from pain

• Rectal pain during period

• Pelvic floor muscle spasms

• Heavy periods & clotting

• Chronic pelvic pain

• Pain during bowel movements

• Pelvic floor dysfunction

• Ovulation pain

• Severe bloating ("endo belly")

• Anxiety related to each period/pain

• Severe fatigue throughout the cycle

Does any of that seem "normal" to you? Yeah, I didn't think so...

To my surprise, my post-op pain was extremely tolerable compared to my period, and I only had to take ibuprofen 2-3 times total.

Let that sink in...

The pain I experienced after having a literal surgery was less painful than my periods were. That's insane!!

The biggest things I noticed were soreness in my abdominal muscles, tenderness at my incision sites, and pain from the gas they filled my abdomen with. Overall, my recovery was pretty uncomplicated. My incisions healed well, I returned to work after three weeks, and started physical therapy again at four weeks post-op. I detailed my full recovery plan and process on my instagram if you're interested!

Lessons Learned & Moving Forward

At my post-op follow up, we discussed my prognosis as far as symptoms and pain. Remember how I mentioned they also thought I might have adenomyosis? Well, according to my specialist, if my period pain does not improve, it's likely that I also have adeno in addition to endo. Truthfully, that was difficult to hear, as adenomyosis has no cure (besides a hysterectomy) and the lesions cannot be removed like endo can. And as I mentioned before, surgery is only a temporary fix for endo, as there is a high chance that the lesions will grow back within a few years.

Fast forward to now (Feb. 2023), and I'm about three months post-excision surgery. I've had three periods since my procedure, and unfortunately, I haven't seen much improvement in terms of my pain. My period symptoms are still severe, and I'm still unable to function properly on the first 1-2 days. I still have ovulation pain, and I still get "endo belly" flare ups. The only thing that I've noticed significant improvement in is my chronic daily pelvic pain and pelvic floor dysfunction. My muscles are still tense, but they are better than they were before surgery. Additionally, I my daily pain is more mild, and sometimes, I have days where there is no pain at all!

So where does that leave me moving forward? Only time will tell if my period pain improves. Maybe I also have adeno, or maybe I don't. I just don't know yet.

My journey with endo has been one of the most difficult things I've ever had to experience, but it's also been one of my greatest teachers (cliche, I know). It's taught me to trust my body and my intuition more, because no one knows my body better than I do! Doctors know a lot, but they don't know everything, and they're not always right. I've learned that if a provider is brushing my concerns aside, I need to find someone else who is willing to listen. I could go on and on about the lessons having endo has taught me, but I think I'll make that a separate post for another time...

As far as wondering why my endo pain was not responsive to lifestyle changes, I still don't fully know why. Some might argue that there's no point in continuing if you're not seeing results, but I'd have to disagree. I fully believe that I would have been much worse off had I not been implementing lifestyle changes.

I know there has to be a missing piece of the puzzle that I just haven't found yet. I'm determined to keep trying, and am confident I will find a solution to my pain eventually.

---

What's Next?

I'll be sharing more of my personal thoughts regarding living with endometriosis, emotions & trauma, and holistic healing on the blog. Make sure to check out my instagram as well, for daily stories and weekly posts about all things hormones, menstruation, and holistic health!