Share Your Story: Jonnie

Woman with auburn hair wearing sunglasses and a burgundy tank top

Jonnie was diagnosed with Endometriosis when she was 20 years old. Now, 10 years later, she shares her story with us. It was a long journey before someone truly heard her. And she shares her story to encourage you to keep pushing until someone hears you, too.

Jonnie’s Journey:   I started my menstrual cycle on Friday the 13 in October of 2000. I was an avid swimmer and spent every summer competing with the neighborhood swim team. I assumed my lower back pain and fatigue was related to swimming, not my menstrual cycle.

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Endometriosis Excision Surgery No. 6!

Pre-surgery photo with myself, Dr. Mel Kurtulus and Dr. Matthew Schultzel

On October 21, 2020, I went in for my tag-team surgery with my fellas: Dr. Mel Kurtulus and Dr. Matthew Schultzel. Each had their own specific tasks while they worked together to make sure I was happy, healthy, and well:

  1. Dr. Matthew Schultzel was going to inspect and remove a portion of my sigmoid colon which had deep-infiltrating Endometriosis (discovered during my May 2020 surgery);
  2. Dr. Mel Kurtulus was going to peek around inside to see if I had any new Endometriosis growths since May or any scarring or other things that may need to be cleaned up.

If this sounds familiar, we did a similar tag-team effort with these two amazing surgeons back in November of 2018, but for the opposite side of my colon.

The best part? I have had ZERO, zilch, nada, no pre-op pains! The only pain I’ve had since October 21st has been healing from surgery! My November pain journal screamed of the difference in my symptoms and Endometriosis pain!

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Endometriosis & the Diaphragm

Courtesy of Wikimedia

If you’ve been a long-time follower of the blog, you may remember in 2014 when my surgeon found Endometriosis on my diaphragm. Several years later, it had completely disappeared (yay!). And it hasn’t been found in any of my subsequent surgeries. This research has been a lot of fun because of my own personal journey.

We’ve previously shared Endo Lady UK‘s experience with her own diaphragmatic Endometriosis, as well as a surgery to remove diaphragmatic Endo. We’ve even had a few brave readers, Lyndsay and Tabitha, share their own stories about endo on their diaphragm.

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My 5th Endometriosis Excision Surgery

A drawing of a uterus, ovaries, and intestines.
Commissioned artwork by Sarah Soward

What an incredible Journey leading up to my fifth surgery!  Covid-19 postponed my surgery date by a week but, just in the nick of time, California’s governor lifted some lockdown restrictions that allowed for my surgery to move back to it’s original date of May 13, 2020. Today, June 10, 2020, marks one month since my surgery! Already! I am overjoyed with the results and the skilled hands of my surgeons.

A medical folder with "Surgery # 5" written on it
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Share Your Story: Zoe

Zoe, a brave EndoWarrior, shares her journey with us today…even while she has another surgery pending. We wish you all of the best of luck, Zoe!!!

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I started my period by having waterfalls for periods with no regularity from age 13 but was put on the pill to manage that at age 15 and that worked. I from my teen years thankfully had no interest in having children. I am not a career woman either, I just don’t get the clucky feeling other women get when they see kids – I get that feeling when I see animals instead so I have fur babies.

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Share Your Story: Michelle

Photograph of Michelle and a man in the hospital

Michelle from Virginia was diagnosed with Endometriosis when she was 36.  Now a year later, she shares her Endo story with us.

Michelle’s Journey:  Hi. My name is Michelle. I am sharing this story to help others with endometriosis. I have a very unique story.

In 2003 I came out of the military with a rare bone tumor called fibrous dysplasia. This was and still is in my pelvis. It’s something I went through many years and it took having my third son to put me in a state of barely walking, getting infusions, many rare surgeries at John Hopkins to get the help I needed to walk day-to-day.

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Share Your Story: Michelle

Photo of Michelle

Michelle was diagnosed with Endometriosis when 20.  Now 35, and living in La Mesa, California, Michelle shares her Endo story with us.

Michelle’s Journey: My endo story I first got my period at 10 years old. I remember I was still in elementary school, playing in PE when I got my first one. From there, my periods became increasingly more and more painful.

By 15 years old I remember rolling around on the ground in the bathroom, sometimes in so much pain that it made me throw up. I would miss school sometimes but most of the time tried to tough it out. My periods were always at least 7 days long, super heavy and lots of huge clots. I thought that was normal…..I was taught to believe this was all normal.

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Share Your Story: Kathryn

Quote that reads "I will never give this despicable disease the satisfaction of beating me...ever...

Kathryn was diagnosed with Endometriosis when she was 30 years old.  Three years later, she found our blog and wanted to share her story with us.  It’s a heartbreaking and devastating tale, but one many of us can relate to.  And she will continue to hold her head high, undefeated.

Kathryn’s Journey:   I suffered a horrible car accident in July almost three years ago. The bruising from the seat belt was so bad it took months to heal. Then, in December six months after the accident, I collapsed at work in crippling pain and had to go to the hospital. There they found cysts on my right ovary and uterus. One week later, my gynie is telling me a protein in my blood that detects ovarian cancer which should be no higher than 2 was 171. The next three months I was in a horrible nightmare of doctors telling me I would need a hysterectomy and chemo and would be fighting for my life. I had to make the agonizing choice of pulling my organs out when it wasn’t really a choice at all… And I did it with peace and as much grace as I could. Another month later, I underwent surgery. When I was awake after the tumors on my ovary had been benign and what it had actually been was severe endometriosis. He cut it out, but refused to remove the pipes causing it. When the surgeon told me it would be back, I sobbed… I don’t know why… But I was devastated. Six months later the pain returned. I had been fully cut open from stem to stern the first time. The second time they did a laparoscopy. And discovered the ovary that had the tumor developed a blood cyst that had engulfed the entire ovary. Worse, my fallopian tube was now being twisted and pulled into the same ovary. My gynie did not realize what he was getting into as the sonogram didn’t show much… But he said my tube should be a twizzler and my ovary a walnut. Mine had become a churro and a softball… Two surgeries, six months apart, with no help or sympathy from my now ex-husband… And they still wouldn’t remove all of it… I wanted to have a child of my own but…. God had different plans for me… It still hurts… And now it’s back. I found Lisa’s blog and was overjoyed I was not alone… That the bitterness and hatred of this disease is shared by many sisters. But I can’t do this any more. I want my life back. My endo was so bad it made a blood test show insanely positive for cancer. And the real kicker is that when I was suing the bastard who hit me in that car accident… My insurance company told my lawyer that it sounded to her like a blessing in disguise… I may never have found out there was a problem if I hadn’t been STRUCK by a car. The cruelest part is her daughter was going through chemo for ovarian cancer herself…. I want the pain to stop. It hurts knowing I cannot have children… And I am devastated when I ask myself “why me!” I had been fine up until that car accident… And since then… I’ve had nothing but pain bitterness and rage… And yet, I march on… Because I will never give this Despicable disease the satisfaction of beating me… EVER.

Words of Advice:  Go to your gynie regularly and make them aware of your symptoms and pain level. Try to exclude as many triggers as possible… I am a migraine with aura sufferer and cannot have hormonal birth control which is one of the best defenses against endo… But do not give up and find a community like this one that offers support and love for all suffering and dealing with this devastating disease. Never let your doctor downplay your pain or your gut feeling. If they don’t help you then find someone who can. Don’t suffer alone… I thought I was alone… But this blog showed me that I really am no less a woman and no less beautiful even if my plumbing is yanked out. And remember… YOU ARE FABULOUS!

The Last Word: Please keep writing and updating your blog. I found it just by searching if alcohol affected endometriosis. You gave me more information about my health than my doctor ever did. Thank you… So much! And I love the blogs name.😊

If you would like to contact Kathryn, please feel free to e-mail her.

I want to send a special Thank You out to Kathryn for being brave enough to share her journey with us today!  You are NOT alone in this, and you never will be again.  You have my e-mail address…and I’ll forward you my phone number.  Please feel free to use both as often as you wish.  Much love.  And sending hugs and smooshes your way.   ❤ Yours, Lisa.

Paper with "tell your story" written on it

And if YOU would like to share your story, I would love to share it.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: Carole

A chalkboard with "Finally there was a reason and a name for all my pain!" written on it

Carole was diagnosed with Endometriosis when she was 25 years old.  Now 65, she shares her Journey with us.  And quite a journey it’s been!

Carole’s Journey:   Suffered excruciating pain ever since I started my periods at age 11. Trying to describe the pain, I can only compare it to a vacuum trying to suck my uterus out of my body. I could not even walk, and everybody (even my parents) thought I was faking…Until the day I did not go to a dance because of the pain. I saw a few doctors, who all ordered D&C. Finally (thru a friend’s recommendation to her gynecologist) I was able to get an appointment to see her gynecologist at age 25. He suspected it was endometriosis and ordered a laparoscopy and it was confirmed. Finally there was a reason and a name for all my pain! I was prescribed the painkiller “Talwin” – very strong and I was somewhat “stoned” and even “hallucinated” – which rendered me unable to function for 1-2 days each month at work (better than 7 days of pain without it). Married, I was trying to get pregnant, and even with fertility pills I could not. Exploratory surgery found I had endometriosis that had squished both my ovaries and a lot on my uterus: One ovary removed; then second ovary removed; and finally uterus removed. I was 27 years old. Although most of pain was gone I still had pain with my bowel. At 35 years of age I had 6 inches of my bowels removed as endometriosis was found squishing my bowel. I was so happy to see a commercial on television that talked about it. After all those years people are finally going to believe that ENDOMETRIOSIS is real !!! Thank you.

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