My Endometriosis Journey
The long road to diagnosis and surgery and healing.
"Bad Cramps”
For years, I’ve gone to doctors for my annual check-ups, and for years I would tell them that I had very bad cramps. Over the past 5 years, I would share that the pain kept getting worse. Whereas I used to camp for 1-2 days each month, I found myself over time cramping for 3 days, then 5, days, then 7 days, then 9-10 days. I would ovulate, and then a day or two later, the pain would begin and it wouldn’t let up until my cycle started anew.
Every other month, it didn’t ever completely let up. I had pain on my left side leading up to and during ovulation as well.
I had to have an MRI due to a uterine infection after giving birth to our 4th child five years ago. I was feverish and a bit out of it from having given birth just days before, but I remember the word endometriosis was mentioned after that scan.
At my follow up appointement, I asked about the endo. I was told that my options were to go on hormonal contraception or take another medication that would effectively make it impossible to track my fertility each month. Neither of those options would work for me. I’d been on birth control before, and the side effects were unpleasant. And I track my fertility naturally, so for both faith and practical reasons, I wouldn’t take the other medication.
At that, my provider basically shrugged her shoulders. As if that was the best they could do.
As time went on, doctors would tell me to drink more water because maybe the cramps were from dehydration. I was instructed to take a strict regiment of Motrin starting just before the pain kicked in until my cycle started over. But by this point, whatever was going on inside of me didn’t give two hoots about Motrin. It didn’t cut the pain even a tiny little bit.
What It Felt Like
The pain was often very deep-seated inside me, and unrelenting for those 9-10 days each month. I’ve tried so many ways to describe it- it felt like I was 4 cm dialated constantly, like if I were pregnant and having this pain it would be time to go to the hospital to have a baby.
I’ve described it as a burning, or like someone was scraping out my insides with a knife, or stabbing me, or like the kind of pain you’d feel after doing 100 sit-ups, that stinging in your muscles right at the hundreth one, only the stinging never stopped.
I’ve lived and worked through this pain for years, because I couldn’t just freeze my life until I felt better. I had to keep living. I have 4 kids, I have a job. So I learned to dissociate from the pain best I could when I needed to just do regular life things, but by the time I was a week into my pain each month I would struggle with exhaustion and sadness, counting down the days until hopefully I’d get a little window of relief. The only time my pain receded was if I took a bath as hot as I could stand it, and it would only help as long as I was in the water.
Self-Doubt
Part of the reason, I think, that it took me so long to get help, was because of how hard it was to get a doctor to listen, and so I coped by trying to convince myself that my pain must be normal, that it was just something I needed to learn to live with. Heck, maybe everyone felt this way!
But this year, something began to change. I decided that I didn’t want to just deal with the pain anymore. I deserved to find answers and real, true treatment that took care of the root cause and not just put a bandaid on it.
Still, right up until the moment we left for the hospital for surgery, I continued to question myself. I was so scared that the surgeon wouldn’t find endometriosis and that I would wake up without answers. Was I in enough pain to justify this procedure? Yes!
But when pain creeps up on you gradually over time, and when health professionals shrug it off over and over, it can be really difficult to remember what is actually normal.
Finding Better Care
My journey to finding better care was long and incredibly frustrating. At some point I learned that my best shot at true treatment would be through a NaPro doctor. (Natural Procreative Technology). NaPro doctors use a woman’s natural menstrual and fertility cycles to treat issues. However, finding a NaPro doctor wasn’t easy. I couldn’t find anyone that sees patients in-person in the whole Chicago area. I would need to drive at least an hour away.
I found a NaPro only doctor in the Milwaukee area, and I was incredibly excited to make my appointment and hopefully finally get real help. Unfortunately, through a frustrating turn of events, I waited two months for my appointment with that doctor only to find that their system had glitched and they had lost my appointment and that I’d have to wait another two months to be seen.
Oh the tears I shed that day.
I went from having hope that we were going to get to the bottom of my issues, to staring down another long waiting period-two more months of pain even just to begin the process of finding answers.
Out of desperation, I did one more search. I found a NaPro doctor who does telehealth. She had an appointment available the very next week.
Help at Last
I had my initial consult with the NaPro doctor and I cried. This time, because I was watching someone take me seriously for the first time ever. The first thing she said was it sounds like endometriosis, and so we could be pursuing a path to treat that. I had to get a lot of blood drawn over the course of a month. We learned things, like my estrogen was really high compared to my progesterone, which was really low. We learned I had chronically high cortisol, which can indicate long term inflammation. I had an ultrasound, where we found a possible endometriosis cyst on my left ovary (remember all that pain on my left side?!)
Those things, in addition to the way my pain had greatly increased over the years, was enough to refer me for surgery.
Finally. Finally I was getting help.
Real Treatment
I live in Illinois, near the Wisconsin border, and I drove to Ft. Wayne Indiana for my surgery with Dr. Christopher Stroud.
Why so far?
It is really important to have endo surgery done by a true specialist. Endo can present in many different ways, and it’s easy for a less-skilled surgeon to miss things. In addition, my NaPro doctor here refers to Dr. Stroud’s clinic often because he is so skilled.
I also learned that some doctors cauterize/burn the lesions, and that sometimes that can be ineffective because you can’t know if you cauterized all the way down to the root of the growth. It’s more effective to take the time and care needed to remove the lesions instead.
Another factor in my choice of Dr. Stroud is that he is a NaPro surgeon specialist, and shares my Catholic faith. I wanted to know that the hands that were healing me were not also hands that harmed the unborn. I wanted my doctor to understand that each human life is precious and has inherent dignity. That truly “does no harm” in his practice.
And it was wonderful having Dr. Stroud pray with me and my husband before I went back. What a gift.
Besides not looking forward to the anesthesia, one of my worst fears was that I’d wake up and that they’d tell me that no endometriosis was found, because then I wouldn’t have any answers for my pain.
Thankfully, that worst fear did not come true.
Significant Endo
The surgery was done via the DaVinci robot, and I ended up with 4 small incisions on my abdomen.
When I woke up, I asked my husband if they found any endo. His response?
“They found tons.”
I can’t even describe the relief I felt that after all these years, I was right about my pain. It wasn’t normal. I was sick!
The cyst on my ovary was an endometrioma, basically the liquid form of endometriosis. The ovary had additional endometriosis wrapped around it. There was a significant amount of endo in my pelvis, and smaller endo lesions scattered throughout. Dr. Stroud removed everything he could with excision, and removed the lesions that were too shallow to cut out with a laser that vaporized them. I also have suspected endometritis and will learn more about that in a couple of weeks, but it is treatable. I also have adenomyosis, endo implanted deep in the muscle of my uterus. The only way to treat that is with a hysterectomy, but I may see enough of a change in my pain from all the other stuff being gone that I’ll be just fine for a while.
Post-Surgery Feelings
I feel so validated. I was right. My pain was not normal pain.
I feel angry. I am a woman who, for years, had her pain dismissed. Who was never offered a referral or any options for actual treatment of the root cause of my pain until I hunted it down myself. I had to work incredibly hard to find the right kind of doctor, the kind who would listen to me.
It should not have been this difficult or taken this long to get actual care.
I feel grateful. Grateful that NaPro doctors exist, and that specialists like Dr. Stroud make it possible for patients who need his expertise to find him. All of the nurses that helped me the day of surgery commented on how thorough Dr. Stroud is, and that it’s hard to find anyone as skilled as he is in this area. I’m grateful for good insurance and a supportive family. Grateful for the prayers of so many people, and for the help that showed up in the form of visits and meals over the past week so I can focus on rest.
I feel hopeful. I hope that my kids will remember this process. They’ve heard me say that I have a tummy ache so often over the past several years, that it became normal for me to not be up for certain things, or to need to take a scalding bath and miss out on family time together. I hope that if they ever think that something going on with them isn’t normal, that they will remember how I advocated for myself and that that will help them know to advocate for themselves too.
I’m also hopeful for a change in my pain. I was in a lot of pain in the days leading up to surgery, but now, while I can feel where my incisions are, all that deep pelvic pain that I had for so many days each month… just isn’t there anymore. It’s literally gone. I will happily take a few days of incision discomfort for this. It’s not even close to how badly I’ve hurt for so long. I’m hopeful for more energy and more time with my sweet family. Hopeful that I’ll be able to let go of some of my coping mechanisms for the hurt, which often involved distracting my mind with something else to divert attention away from the pain.
We Deserve Better Care
If you are someone who has bad pain each month, please know that you deserve to feel better. Many women struggle with pain and infertility, and not every doctor knows how to help us.
I suggest finding a NaPro specialist, even if you need to begin with telehealth. I was able to finally find a doctor through www.mycatholicdoctor.com. Follow people like napro_fertility_surgeon on Instagram.
We deserve better care. We deserve more than just a shrug of the shoulders or a bandaid or ridiculous advice that doesn’t work.
We deserve to not have to spend months or years being brushed off by doctors who should know, at the very least, how to point us in the right direction.
To take the words “I am in pain” seriously when a patient says them.
This has been a turning point year for me in term of advocating for myself on multiple fronts, including my health. That self-doubt, that questioning, has been permanently replaced by a firm conviction that I deserve better. And I won’t ever go back.
Over the next couple of months, I’m looking forward to learning what normal looks like for me on the other side of surgery. It took a long time to get here, but here’s hoping for a less painful life on the other side.
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My Children’s Books
I write middle grade novels! My three books are currently published with Penguin Random House. While I’m published in the secular market, all of my stories are deeply informed and inspired by my Catholic faith. They are a good fit for kids 8 and up who can navigate some suspense/spookiness.
Titles:
The Circus of Stolen Dreams
The Edge of In Between (A Catholic & CS Lewis inspired retelling of The Secret Garden)
The Night Train (features a Catholic sidekick/friend)