Katie’s Endometriosis Story

Katie’s Endometriosis Story
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Hands up if any of this sounds familiar to you:

  • “Just take some antidepressants”
  • “Nothing a little Advil can’t fix”
  • “Every woman goes through this”
  • “There’s nothing wrong with you–you look fine”
  • “It’s just part of being a woman”
  • “Just have a hysterectomy”
  • “Just get pregnant”
  • “It’s all in your head”

Actually, it’s in my uterus, it’s on my cul-de-sac, it’s on my uterosacral ligaments, it’s on my appendix, it’s on my bowel stretching across to the right side of my rib cage, as well as in the muscle lining of my uterus… NO, It is most definitely NOT in my head!

I have endometriosis. Actually, I have endometriosis and adenomyosis, chronic back pain and pelvic pain ,vulvodynia, pelvic floor dysfunction, and I suffer from depression and anxiety.

As long as I can remember I have been living with pain, and it all started back when I was 11 years old. The big day…the day I got my first period. My friends and I called it our “flower,” except mine wasn’t a flower. Mine was a weed. It turned out to be an ugly, twisted weed, the kind with sharp thorns that make you bleed and hurt like hell when you touch them.

For most girls, getting their first period is really exciting. Some even have parties thrown for them–a full moon party–no full moon party for me. I was too busy vomiting , with intense cramping and so much pain that I would be bed ridden for the first two days of my period. Every single month I would miss at least 2 days of school. I would miss birthdays, parties, holidays, and special occasions. I still do.

I never understood…why me? Why don’t my friends experience this? Why don’t my family members, my cousins get as sick as me? I felt so alone. Until I met the women in my endometriosis support group. I still remember my very first support group meeting. It was a turning point for me. I left that meeting with a whole new outlook on things.

I got home and proclaimed to my boyfriend and family members that in fact I was not crazy! I felt like I had stumbled upon gold! There was a whole other world out there filled with women, 1 in 10 in fact, who were going through the exact same thing as me. The group meeting was a safe and supportive environment where I could trade stories and talk all about the different treatments I’ve tried, and the horrible side effects you experienced.

I told the support group about my unsuccessful surgery in Vancouver and how the doctor didn’t find any endo and in fact told me I had a “very good looking uterus” (whatever that means?). I told them about my symptoms and how they progressed; multiple cysts rupturing, pain with urination, pain with bowel movements, pain with sex, vaginal spasms, constant nausea and vomiting, constant back pain, constant cramping.

I told them how my life consisted of one unsuccessful treatment after another: birth control, Mirena IUD, hormonal treatments, Visanne, nerve block injections, pain medications. I was so tired of feeling like a guinea pig. I met others, who shared my pain, who also gave up their dreams, as I did mine, because of the unbearable pain. I met others who could no longer work a full time job because of their health… I was NOT the only one.

I remember one specific person pulled me aside at the end of the meeting that night, and told me not to give up! To keep fighting for myself, that the pain I was feeling was NOT NORMAL, that sometimes it takes 2 or 3 surgeries before endo is even found, that there actually isn’t enough education around endometriosis to even help train doctors to spot endometriosis in all of its tricky forms.

I finally felt like a weight had lifted. I wasn’t crazy. I no longer felt like a stranger in my own body. I felt so much comfort in the fact that I was not alone in this. I left that meeting feeling empowered, and it TRULY did change my life.

Since then, I’ve undergone another excision surgery, but unfortunately the relief was minimal and brief, but with the support of my family, friends and The Endometriosis Network Canada, I persevered. I learned how to live with this disease as best I could. I made friends, and I met new doctors, which enabled me to form an amazing support system. I am currently working with an awesome endometriosis specialist whose compassion, care and empathy, have given me such hope. Through him I met an amazing pelvic floor physiotherapist, who works with me weekly and has helped me in so many ways. I can’t even begin to thank her. She’s like my vagina whisperer. I also work with a physiotherapist for my back, and my naturopath who guides me with my diet and other pain relief techniques. These people, with their special talents, have become an integral part of my support system, and I don’t know where I would be without them, not to mention my family, my friends and my amazing partner whose supported me since day one. I am so grateful to have you in my life.

My journey with endometriosis has not been an easy ride. No one’s ever is. It’s been lots of learning, lots of trial and error, and lots of ups and downs. This past September, after spending a year in ‘forced menopause’, another unsuccessful treatment, I found out that I have yet another condition: PCOS (Polycystic  Ovary Syndrome) and that my right ovary was not working properly. This would mean I would have to see a fertility specialist when the time came to start a family. I found myself in that all too familiar place, being betrayed by my body, as once again the light at  the end of the tunnel was feeling further and further away.

This December, much to our unexpected surprise, my partner and I got the amazing news that I am pregnant! We will be blessed with a child, which we somehow conceived all on our own, without any fertility treatments! I am sharing this news because I want you all to know that no matter how dark that tunnel is, there WILL  be light. Please don’t ever give up: there is always HOPE!

I think the most important thing I’ve learned is that you have to be your own advocate. You have to create a safe support system, with family members, with friends, with your significant other, with you doctor or specialist or physiotherapist or other healthcare professionals.

Living a life with endometriosis means constant sacrifice. It means never ending challenges. Make the changes that need to be made, and celebrate the small victories. Come out to our support group meetings, get involved in the endo community, volunteer for the Endometriosis Network Canada. These are all things that can empower you, that can give you back your sense of self.

The Endomarch is “a million voices united for endo awareness,” so let’s stop suffering in silence. You are not alone!

Thank you so much for listening to me. In closing, I’d like to leave you with this quote from Khalil Gibran:

“Out of suffering, have emerged the strongest souls; the most massive characters are seared with scars.”

About the author: Katelyn Luciani is a member of the board of The Endometriosis Network Canada.