Oh, where can I start with today’s post? First of all, let’s talk about the author, my friend Ashley Tramm. This girl has been such a blessing to my life! Not only does she live just a town over, but she has blessed our family with so much over the course of our friendship. Meals to the door, coffee dates, baby shower celebrations … she’s SUCH a gift to me. And I am so thankful for her opening up today on our What’s It’s Like series to share her experience with an endometriosis diagnosis. I know many of those reading can relate and I know her story will encourage you, and also, if you can’t relate, help you understand this disease a little better. Ashley, thank you for sharing!
And now, sit back and read What It’s Like to Suffer With Endometriosis.
“Tubes are clear, I don’t think you have endometriosis. Why don’t we try clomid?” said Dr. Let’s Try Throwing Something At Wall and See if it Sticks. Frustration welled in my throat and the tears began to stream. “It’s OK, just go to Target and look at all the misbehaving kids and just enjoy walking the aisles of Target alone.” Yes, those were the exact words from my OBGYN. Her bedside manner was truly impeccable.
Finally, as a thirty-two year old, we are a family of three. We tried for nearly four years before we had our miracle girl, Madeline Elizabeth in our arms. Our journey has been laden with trials, suffering, longing, hoping and praying, and by God’s good grace we now have our precious daughter.
I will share a sliver of our journey, but I will primarily focus on what it is like to live with endometriosis (endo). It’s a disease that is not frequently talked about, yet 1 in 10 women in the United States are living with this fire inside of them. And not a energetic, go get-em fire. Worldwide, 176 million women are dealing with this disease that affects daily life. Those are staggering numbers, and in 2018, there is still no cure.
According to the Endometriosis Foundation symptoms of endo include:
- “Killer cramps”
- Long periods
- Heavy menstrual flow
- Bowel and urinary disorders
- Nausea and/or vomiting
- Pain during sexual activities
- Chronic fatigue
But really, the Endo Foundation didn’t need to tell me this. Most of the above are part of my daily life, especially around that time of the month. In our story, my endometriosis included years of infertility.
Just for reference, the clomid that Dr. Impeccable Bedside Manner prescribed didn’t work. I found a new doctor. I explained our journey, years of trying and no baby, my HSG came back and my tubes were clear, so I can’t have endometriosis, can I? She advised to undergo a laparoscopy. That really is the only tried and true way to determine and diagnose endo.
So five belly scars later, I slowly woke from my anesthesia. She determined that I did indeed have a horrible case of endometriosis that had spidered all over my reproductive organs and bowels. She advised another removal surgery in six months, and recommended Lupron, a monthly shot that would put me into pseudo-menopause. Which basically means that the option to continue trying for a baby was off the table.
I was hopeful, but heavy-hearted. I was thankful for a diagnosis that seemed to take one to many years. It felt freeing in one sense to finally know the underlying cause of my infertility, as well as a reason for the pain that I had been dealing with since middle school.
So what exactly is endometriosis?
Basically in broken-down terms, the tissue from inside your uterus grows outside the uterus, and when the hormones are released upon your menstrual cycle, the tissue sheds, but it has nowhere to go. Thus creating a web of scar tissue and essentially one big fat mess. There has been evidence of uterine tissue in the lungs and brains of some women. It can grow outside the fallopian tubes causing blockage (that is why the first doc thought I didn’t have endo due to my tubes being clear). It can also grow around the ovaries causing damage to the eggs. It is the disease of nightmares for women desiring to grow a family, and we haven’t even touched on the knife-daggering pain that it causes.
Back in the doctor’s office for my post-op appointment, I waited on the first shot of Lupron. I called my husband frantically, and said “I can’t do it. Can we get a second opinion?” The nurse came in with the “menopause on a tray”, and I kindly declined the shot and said I would have to come back at a later time. It felt as if I would be putting our journey towards a baby on a major halt if I went through with it.
I ended up Googling and researching the top doctors in Minnesota for dealing with endometriosis. He sat with my husband for over an hour discussing the disease and all possible options. He recommended skipping the Lupron and heading straight into an excision surgery. One month later, I was under the knife again, but this time in the hands of a trusted and compassionate expert.
After that surgery, my pain nearly dissipated. My periods were lighter, and more manageable. I felt confident in the next leg of our journey towards pregnancy.
My number one takeaway through this experience is that if you suspect that you have endometriosis, and your doctor advises a laparoscopy to diagnose, find an endometriosis specialist to do your surgery first. I underwent my first lap, and there was no tissue removed, and it was an expensive and painful surgery, and then I had to undergo another invasive surgery right away. Most regular OBGYNs don’t have the expertise to truly excise the endo. Do your research and find the best darn specialist in your area.
While there is no cure, several things have helped manage my endo:
- Acupuncture – my insurance covered the procedures due to my diagnosis
- Diet – A diet free of caffeine, red meat, deep-fried can alleviate flare-ups (Umm this is really hard, and I will admit that I still need my coffee)
- Exercise – Help with pain and bloating
- Community – supportive family and friends are crucial when dealing
I must remain hopeful that a cure will be found to help millions of women suffering. Life with endometriosis is a roller coaster, but finding a network of support is key. For all the women out there who may be suffering, please feel free to reach out if you have any questions. I am more than happy to be a resource!
- The Endometriosis Foundation
- Helpful information and resources to find trusted doctors
- My Endometriosis Team
- A social support system where you can reach out to others who suffer with endo
- Endometriosis News
- Articles and helpful resources on endometriosis
Ashley Tramm is the joyful mother of one year old Madeline Elizabeth and wife of Matt. They reside in St. Paul, Minn. Ashley worked as a reporter, and most recently a content marketer, but is now home with her daughter, but does freelance marketing on the side. She loves connecting with mamas, exploring the Twin Cities, and DIY home projects. She would love to connect over the web about any topics related to endo, infertility, or new mama questions at email@example.com. You can connect with Ashley on Instagram as well at @ashtram.
PPS – If you’re ever looking for a devotional on living life while in a waiting season, check out the devotional I co-authored called ‘In the Wait’!
PPPS – Check out the other contributions from this series, including What It’s Like: to experience multiple IVF cycles, raise a child with special needs, use an egg donor, be a DIY-er and home style blogger, be a NICU nurse, and Live Fully in Singleness While Still Hoping for Marriage! And stay tuned for many other amazing topics to come every Tuesday and Friday here!