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Desperation to Validation

Hi, my name is Courtney and I’m 30 years old. The last few years have been rough, to say the least. Here’s some of my medical history before I begin to explain my road to finally being diagnosed with endometriosis.

I have a long list of medical issues and have had 7 surgeries, 5 of which have been within 2 years of each other. I’ve had a grapefruit size cyst removed from my right ovary at 16. I had my appendix removed at 20. I had my first laparoscopy to diagnose endo at 27. I had it pretty much everywhere along with adhesions on my bowels, my right ovary and Fallopian tube. 2 months later, I had my gallbladder removed. Even after those last 2 surgeries, I still had severe, constant right sided pain. Turns out my endo had come back with a vengeance. I had an endometrioma that was larger than my uterus on my right ovary and adhesions fusing it all to my abdominal wall. I then had another laparoscopic surgery to remove endo, the endometrioma, and adhesions. I also was given the option to have my right ovary and Fallopian tube removed and I 100% knew it was the right thing to do. I had been getting cysts constantly on my right ovary since I was 16, ranging from grapefruit size to golf ball size.

So, all within 7 months, I had 3 surgeries. 6 months later, I found a lump on my neck. Turns out I had large nodules on the right lobe of my thyroid and there were so many, it had to be removed. A year later, the left lobe became exactly as the right side was and I had it removed in September.

Was it all connected?

Thinking back on all of these struggles, I feel like endo has to be related or linked to all of my medical history. When my chronic pain began from, what I didn’t know at the time, endo, all of these other issues started. I’ve also had severe chronic migraines for the last 10 years, which have rendered me disabled.

Basically, everything I could have removed on the right side of my body, I’ve had removed. Coincidentally, my endo has been predominantly on my right side.

I got my period when I was 14. My cramps would be so bad, I couldn’t walk. Being that females have always been told that “it’s normal”, I had no clue that the pain I had was any worse than anyone else’s.

By 16, I began to have horrible pains in my pelvis. After an ultrasound, it was found that I had a grapefruit sized cyst on my right ovary and it would need to be surgically removed. After that, I had my usual period agony still, but the pain of the cyst was gone. About 6 months later, another cyst was found that was the size of a baseball. I was given a new birth control and told it’ll go away. This kept happening for years.

My constant abdominal pain started in late 2014, early 2015, along with my migraines increasing in frequency and severity. I kept going to the emergency room for migraines, but just blew off the abdominal pain for a while.

Once the abdominal pain began to increase and become constant, I went to my regular dr multiple times explaining how I felt and where the pain was. He kept sending my for tests on my kidneys, thought maybe I pulled a muscle, or had a bad bladder infection. My dr gave me something for the pain, nothing narcotic. Just an anti inflammatory.

Could it be endometriosis?

It wasn’t until my husband came home from work one day and told me he spoke to his boss about how I’d been feeling. Turns out everything I’d been experiencing was exactly what his wife went through and he said his boss told him she has endometriosis.

Before that, I’d never heard the word. I looked it up and every symptom I was having was listed. Constant abdominal pain, bloating, painful bowel movements, irregular periods, pain when sitting, pain with intercourse, pain from minimal physical activity. Once I realized this is possibly the answer to my problems, I called my gynecologist ASAP.

At my appointment, I explained what I had been experiencing and he agreed it could be endometriosis. He prescribed me progesterone and said to come back if I were still having issues. Well, needless to say, that did nothing. So, I went back, sobbing because I was in so much pain and just couldn’t take it anymore. He comes in the room and asked, “what’s going on, why are you here again?” Pissed off is an understatement. He didn’t even remember our conversation and didn’t even bother to look at my chart. I never went back.

Finally…a doctor that listened & cared!

I poured my heart out on Facebook begging for a dr that specified in endometriosis and thank god my childhood friend/neighbor is a nurse and worked for a gynecologist that did. I made an appointment for the next day.

I bawled my eyes out as I explained what I had been going through and how miserable my daily life had become. He immediately agreed that it was highly likely I had endo from what I told him I was going through. He scheduled surgery for the next week. I’d never felt so validated and cared for from a dr in my life.

I had my first surgery and was finally diagnosed with endometriosis. It was a bittersweet feeling. I felt relieved because I knew I wasn’t crazy. Then I felt sadness, because I knew I’d be battling this my entire life. My dr is amazing. He explained what he did and what he found and told me that I in fact was not crazy.

Feeling hopeful after my first surgery, I thought I’d be my old self again. Pain free and living an easier life. I felt good for about a week and my pain was back all over again.

I began have severe acid reflux. Vomiting bile. Diarrhea and horrible nausea after I ate anything. Turns out my gallbladder wasn’t functioning. I figured that’s where the pain was coming from. I had surgery to remove it 2 months after I had had my lap. I then thought to myself, “ok, this is it. This is why I was hurting again and after it’s out I’ll be fine!” Well, guess what? The pain didn’t end. And then I knew it had to be endo again.

I was defeated. Crushed. Wondering why is this happening again. Why so soon. Why me. I let the pain go on for 6 months, until I couldn’t take it anymore.

Please, NOT ANOTHER surgery!

I went back to my gynecologist, explaining that I felt like I never had the surgery at all. He sent me for an ultrasound immediately it see if he could find anything. I ended up having an endometrioma that was larger than my uterus on my right ovary. My dr explained it may be in my best interest to remove my right ovary and Fallopian tube and I agreed. I was scheduled for surgery the next week. I was heartbroken that I’d have to ANOTHER surgery.

My dr told my husband and mom the surgery should be about 45 minutes. Well, it ended up being 2 hours. I had SEVERE adhesions and endo all over. I felt immediate pain relief after this surgery. It was unbelievable to me to feel…”normal” after being in so much pain for so long.

At my follow up, my dr explained how bad it was and that he made sure he removed it all. He showed me the photos and explained everything. I thanked him with tears rolling down my face. He saved me.

My surgery was January 12th, 2018 and I can happily and gratefully say,
I’ve been pain free since. I just had my yearly pap in November. After it was done and my dr explained that if I have any issues not to hesitate to call, I stopped him before he left the room.

I said, BAWLING like a baby, “This past year has been amazing. I just wanted to thank you, really thank you for changing my life and believing me.” He just smiled and said, “Of course. If you ever need anything, call me.”

Don’t give up. Great dr’s exist. Don’t stop fighting for yourself until you find one that respects and believes you. 💛

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • JoBodner moderator
    2 weeks ago

    Hi @courtney89, I just wanted to say how much I greatly appreciate you taking the time to share this beautiful & touching story. You have absolutely had to endure so much over the years & I am so thrilled to hear that you are getting the relief that you deserve this past year. It is such an important reminder to many of us to never give up finding the care that we deserve! We are all endo warriors & thank you for being part of this amazing community! I also wanted to let you know that this story was also featured on our Facebook page! Thought that would be pretty cool to share with you! You can check it out here if you’d like.

    Keep us posted on how things are going & again…thank you sharing your journey with us!

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