My Story: Endometriosis and Infertility

In this post I share my story and talk about my journey with endometriosis and infertility. I share about my journey with autoimmune diagnosis, how healing diets have helped, I talk about my four operations and I share some recovery tips. It’s personal and it’s my story. 

 

yellow ribbon for endometriosis

 

 

 

 

I realized recently that I haven’t shared about my AIP health journey much recently. Many of you know that I underwent surgery a few months back, but you may not know what or why and what’s going on now.

So, this post will be a little different than usual. No recipe here… just part of my adventure with an autoimmune diagnosis.

From reading my “about me” page, you may be aware that I have been diagnosed with 3 Autoimmune Conditions – spondylarthritis, uveitis & endometriosis. For the rest of my life I’ll be using AIP (with some reintroductions) to keep my spondylarthritis and uveitis at bay. But, my battle with endometriosis is now effectively over.

What is Endometriosis? (and is it Auto Immune?)

In the most simple terms, endometriosis is when the endometrial cells that line the inside of a woman’s uterus also abnormally appear outside of the uterus and cause extreme pelvic pain (among other symptoms) especially during a period. These endometrial cells often are found on other pelvic organs – the outside of the uterus, the ovaries, the fallopian tubes, the bladder, the bowel and the pelvic wall. Very rarely it can occur outside of the pelvic region, but endometrial lesions have been found in the liver, lungs and even brain.

When a woman has a period and the endometrial cells inside the uterus are shed (normal monthly behavior), those outside of the uterus also are shed forming more lesions and therefore more pain. The scarring caused by the buildup of these endometrial lesions worsens over time as they are added to month after month.

Typical symptoms are: painful cramps during periods, painful intercourse, painful bowel movements, lower abdominal and lower back pain, diarrhea and. or constipation, fatigue and heavy bleeding during periods.

Does endometriosis cause infertility? The simple answer is no, although women who suffer with infertility have a higher occurrence of endometriosis.

What is the cause & is it an auto immune condition? The cause is unknown. But, there are some theories that problems with the immune system contribute to the development of endometriosis, when the immune system does not properly detect and destroy endometrial tissue outside of the uterus. So, maybe it’s auto immune condition…. maybe not. But, statistics do show that women with endometriosis have a higher risk of developing auto immune conditions… so it’s related somehow.

Endometriosis effects about 1 in 8 women during their reproductive years, so chances are you know someone who is suffering with it is. Many people, with mild cases, are never diagnosed and just suffer in silence.

 

cartoon of a uterus that's fighting

My Endometriosis and Infertility Story

The back story is that I had suffered with pain since puberty and just thought it was normal. Girls have cramps, right?

About 10 years ago in a normal check-up a doctor discovered what she thought was a uterine fibroid as well as a big ovarian cyst. More tests were run and surgery was scheduled. It turned out that I had 1 large and multiple small cysts, but no fibroid.

What the tests had shown as a fibroid was adhesions from endometriosis all over my abdominal cavity. The surgery that should have taken 45 minutes took 3 hours as the doctor painstakingly scraped every adhesion off in an attempt to preserve my fertility. It turns out that endometriosis was my first AI condition. That was surgery #1.

After this first surgery I wanted to find a natural way to deal with the endometriosis and that was my first glimpse into healing diets. I went on what I would now see as a “pescatarian paleo diet” although the site I found it on called it an ‘anti-inflammatory diet for endometriosis.’ It was grain free, dairy free, sugar free, soy free, egg free, free of red meat and poultry (unless 100% organic, grass fed, pastured, wild) and free of all processed foods. It encouraged seafood 2-3 times a week and otherwise was vegan paleo. I stayed on this diet for about 2 years, all the while joking that it was to help me get pregnant some day and if I didn’t get married and have a baby in 5 years I was going to give in and eat a big, juicy cheeseburger.

 

Surgeries 2 and 3

Surgery #2 was a few years later. In this time between surgeries I stuck to the diet, although I did slowly start allowing some red meat along with some processed ‘paleo treats.’

Leading up to the surgery, I had started having pain again, and once again, a cyst was discovered. This surgery was fairly straight forward as they removed a couple of cysts and cleaned up the little bit of endometriosis that had formed since the first surgery. At this point, the doctor said my endometriosis was almost non-existent and fertility shouldn’t be a problem. The surgeon even said I should be pregnant in 6 months, to which my dad replied…. only if she gets married first.

Not long after surgery #2 is when I was diagnosed with spondylarthritis and uveitis and found the AIP paleo diet. It was an easy transition for me, as really all I had to cut out were nuts and nightshades.

Fast forward to January 2016. The night before a friend’s wedding I ended up at the ER in excruciating pain. The next day between the ceremony and reception I had an ultra sound done and sure enough, a large cyst and this time another large fibroid.

In my mind I felt like surgery #3 would be my last chance, but I wasn’t ready. The timing didn’t feel right. I held off on the surgery and the next 10 months suffered worse than I had before with pain and other symptoms.

Finally, by October 2016, with a wedding a few months in the future, the timing seemed right, so I scheduled an appointment. I found a great surgeon and we started making plans for the surgery. I told her about the first surgery and what they thought was a fibroid, so she did some testing and determined it most likely was adenomyosis. The surgery was scheduled not long after our engagement, so that I would be recovered in time for the wedding.

This 3rd surgery lasted over 6 hours as my doctor carefully removed as much of the adenomyosis tissue as she could. Post surgery she told me pregnancy would be a challenge, but not to lose hope.

Infertility and Surgery #4

Joseph and I got married April 2017 and immediately started trying for a baby. The first few months we weren’t concerned… these things do take time.

After 6-7 months, we made an appointment with my doctor to start testing me for fertility concerns. Within a week, the tests came back showing that the chances of me conceiving were almost non-existent. And, the doctor informed us that even if we were open for IVF that I wouldn’t be considered as a good candidate. She gave me some supplements to try and boost my chances of ovulation for a couple of months and we went on our way.

Then, one morning I woke up in some of the worst pain I’ve ever had to we rushed to the hospital. The on call doctor did an ultra sound and said she saw a large ovarian cyst and a large mass on my uterus. Her bedside manner was horrible and she basically looked at me and told me the only option was hysterectomy.

We left devastated.

The next day, we went back to my doctor and she started talking about options to operate and preserve my uterus. She was still willing to be hopeful, even though the odd were very slim. 

A few days later I saw her again and asked straight out…. “is there any chance for me to have a baby?” Her answer was an honest ‘no.’ At that point we moved forward with the plans for surgery and she told me my best option was hysterectomy.

We sought counsel from friends and family and pastors and the surgery was scheduled. It was like this was the answer we needed.

No more waiting. We knew that our hope for having a family would be found in the grief of another woman not being able to raise her child. Now we are on the path to growing our family through adoption.

Hysterectomy

The surgery itself was an interesting experience. To help with recovery the anesthesiologist suggested an epidural and a light sedative. I like the idea of quicker recovery, so sure. He told me I’d be mostly out of it, but I didn’t think about the fact that I’d be somewhat aware of my surroundings. Let me just say that 3 hours of being somewhat aware that doctors hands are inside you is…. well it was weird to say the least.

Recovery had me in the hospital for 5 days. And then home recovering for 6 weeks before I started feeling close to my pre-surgery self.

Recovery Tips:

  1. Prep lots of food before going to the hospital to eat well while at the hospital.
  2. Take your own food to the hospital – I cleared my diet with my surgeon and had broth, smoothies, puréed vegetable soups and then some semi-solid soups with chunks of veggies and salmon.
  3. Let people help – my hubby and my parents were here to help and although it was weird to ask for help, I know I needed it.
  4. Get sunshine – as I was able my mom and I would get outside and stand or sit in the sun.
  5. Movement – as soon as I was able to get out of bed we would walk laps in the hospital hall, and then at home I walked inside my apartment building and then downstairs and outside as I was able.

 

 

yellow ribbon for endometriosis

 

 

 

 

 

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