JH was 21 years old when she received her diagnosis in 2004. Now 34, she is living in Minnesota and is in a lot of pain after having three children. After reading her story, do you have any words of advice for JH? She would appreciate an email…
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A newly published study about a 35-year-old woman with a case of crazy-insane-aggressive Endometriosis hit my inbox. I was going to fit it into a previously-written blog about hysterectomies and Endo or extra-pelvic Endo…but it was so fascinating that I decided to create today’s blog entry.
Initially, this young woman had abdominal surgery to remove her right ovary because of a ruptured ovarian cyst. She subsequently had three additional surgeries to excise Endometriomas (chocolate cysts) and adenomyosis via a total hysterectomy which also took both of her fallopian tubes and remaining ovary.
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After suffering from horrible periods and cramps since 13 years old, Erika 18 years old when she diagnosed with Endometriosis. Living in Ireland, she shares her tale with us just three years later:
Erika’s Journey: This is just a short story of the life and pain I’ve been living in! My name is Erika, I’m 22 and was raised in Dublin. I still live at home with my mother and brother seeing as its so hard to find a home at this minute in Ireland. It all started when I had my first period, I was in a lot of pain and had no clue of actually what was happening to me? All young girls oh I can’t wait for my periods to come so they would feel more mature ‘grown-up”. Where with me it was a different story completely, from my first periods all I remember was pain, very severe pain and didn’t know how to control it.
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So, today I had an appointment with my gynecologist and surgeon, Dr. Mel Kurtulus. It was to discuss my Endometriosis symptoms, which I felt have been worsening. My (two) July periods, and my August period were horrendous. Going through my 2017 Pain Diary, March and April were also up there on the pain scale. I was all prepared to go on in and ask for another surgery…and possibly a hysterectomy just to rid my life of periods (since that’s when most of my pain is present). I know it’s not a cure, but it would most certainly help some…
Then, last Thursday evening I started my period: the night before I was to leave for a family camping trip…I was devastated. I expected to be fully-medicated the entire weekend. I packed my Naproxen Sodium, my Tylenol 3 with Codeine, my Tramadol, and my Zofran. BUT…surprise surprise…my period cramps NEVER rose above a 1 (on a scale of 1-10) for pain levels! I didn’t even have to take an Ibuprofen…the ENTIRE weekend! (Insert elated exclamation here)
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One of our readers, Jocelyn, emailed me this question:
Hi Lisa,
Thanks for doing this! I was diagnosed with Endo in May 2017. After of course many ultrasounds, bladder scans, colonoscopies… you name it. The laparoscopy in May only revealed 2 very tiny cysts on my ovaries. My doc was able to get a tiny sample sent it off and then after much debate, they gave me the Endo diagnosis. My pain was very severe. I could barely complete normal activities without taking either 800 mg of ibuprofen every 2-4 hours, tramadol, rest, etc. With that being said, my question is even if the Endo is so small can it still cause a great deal of pain? I’ve heard women who have Endo all over their bodies. I tend to question myself because the cysts were so small. I apologize for the ridiculously long response. It’s just been very heavy on my mind. Thanks for listening and all that you do!
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Okay! Here we go!
Today I met with my ophthalmologist and we talked about my eyeballs. I learned quite a few things today.
He confirmed that I do have two cataracts in my left eye. The first is a benign congenital cataract. One that I was born with. He cannot say if it has or hasn’t grown over my 38 years ’cause he didn’t know me when I was born, but it’s small and out of the way 😉 He did confirm it’s there and it’s sounds to be in the same spot it was when I learned about it 15 years ago.
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So, September 21, 2016, was my second Endometriosis excision surgery. It was done by robotic-assisted laparoscopic surgery. What does that mean? My surgeon sat at the controls of console and directed teeny tiny robot hands inside my belly. I had forgotten a lot of the recovery process from my 2014 surgery, so decided to take notes every day…so that way if I ever go back in, I sort of know a timeline!
I meant to publish this a long time ago…but, well…the dog ate my homework?
A “brief” little note – I tracked my pain, symptoms, diet, milestones, and whatever for a week, but as of today (8/16/17) I could not find the rest of my notes. So, we get four days. And I’m most certainly going to refer to this if I ever have to go back in for another surgery…
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After suffering with horrible periods and cramps since 13 years old, Stephany was 31 years old when she finally received answers: her Endometriosis diagnosis. Two years later, she shares her story with us.
Stephany’s Journey: I was 13 the first time I had a “bad cramp”. From then on they never went away & just got worse. I would double over in pain, movement in general while having a cramp just made it worse like a nerve being shocked in my abdominal area. I would just have to stay still until the cramp passed. I would ask to stay home from school during the first day or 2, and luckily a few times my grandmother let me. I tried things like Midol & other off the shelf pain meds but they didn’t do a damn thing. It was like I just ate a skittle to try to manage my cramps, no relief.
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As many of you know, I was on Lupron Depot for six months for my Endometriosis. I wrote about my personal experiences and also how my life had changed after my last injection (and have also shared other’s experiences).
Recently, a friend of mine learned he will be starting Lupron Depot to treat his prostate cancer. My husband was surprised this morning when I told him. He didn’t realize the drug’s original purpose was to treat cancer…in men! And it’s because of the connection with cancer that many people think Lupron Depot is chemotherapy. It isn’t.
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Bloomin' Uterus 