Surgery

Share Your Story: Erika

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Woman smiling with Snapchat filter of cat ears an nose

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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Share Your Story: T.E.

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T.E. was diagnosed with Endometriosis when she was 28 years old.  Now 31, she shares her story with us:

T.E.’s Journey: I was diagnosed with Endo around 28. I saw my gynecologist for painful sex and cyst rupture after sex and he recommended me seeing an infertility doctor for possible Endo. I saw the specialist and he said I did have chocolate cysts and suggested surgery to get a good look at what’s going on. I had the surgery; I did have lesions and my chocolate cysts were drained. I also had a low count of eggs at the time so I had to decide if I wanted to have kids now or never so I never started the pill after surgery.

Fast forward six months, I was back in pain and now till this day, I have had new symptoms arise. Hip pain and the bottom of my feet are new symptoms. I walk for a living so it’s been difficult. I still get leg pain, which is not even around the time of my period and mood swings. I also get lower back pain and severe cramps. My infertility doctor says he can’t do anything else for me so I have been trying other ways. I saw a holistic doctor and went that way and it did help, but the pain came back. I’m going to try acupuncture soon. Wish me luck!!

I want to send a special Thank You out to T.E. for being brave enough to share her personal story and struggle with us today.  Wishing you the BEST of luck with acupuncture!! You are a beautiful, brave, and strong woman.  Thank you!!!

And if YOU would like to share your story, please let me know.  The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.

Yours, Lisa.

Reader’s Choice: Small Endo, But Big Pain?

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Bloomin' Uterus logo surrounded by question marks

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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When do you decide … it’s time?

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So, I have a very important question for you, my Readers.  I value your input and feedback. I always have.  But now I need your advice…

When do you know when it’s time to go back to your doctor and let them know that your pain is returning, that you’re afraid your Endometriosis is back with a vengeance, that it may be time to begin pursuing yet another surgery?

Yet, here I sit afraid that it’s still all in my head.  That I’m blowing my pain out of proportion.  That I’ve lived without it as intense for months and am now not used to it and am labeling it as large, debilitating pain.

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What recovering from laparoscopic surgery was like for me

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Road sign that reads "recovery"

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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Share Your Story: Stephany

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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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Question from our Reader, Candace

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Candace needs your help, feedback, and advice!  She writes:

Hello, I have been an “endo” sufferer for MANY years….many, many, MANY surgeries and a hysterectomy with surgeries to follow! I don’t ever pretend to be an expert on the topic and this question certainly has thrown me for a loop….I’m hoping one of you can help!

I have had a “mystery illness” since February. Extreme fatigue, hoarseness, and right side facial pain, numbness. I have had a slew of tests all of which come back “ok”. Just this past weekend, I started with my “typical” “endo” pain. I am just wondering if this all could be related to “endo.” Anyone else ever experience facial issues related to endo?

I am looking forward to any and all responses. I have been debating on calling my specialist…. Thank You in Advance!

If you comment below, I’ll pass it on to Candace. ❤

A fantastic video showing various locations and colors of Endometriosis

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Text that reads "Laparoscopic appliance of endometriosis"

One of our local EndoWarriors shared this video with us last night on Facebook and it was so incredibly awesome (gross, amazing, cringe-worthy, “ah ha!” worthy) that I wanted to share it with you today.

In 2014, Dr. Xiaoming Guan published this video on Youtube.  It may be too graphic for some, but it’s very educational.  If you have photographs from your surgeries, pull them out and compare!  It’s fascinating!  You may even recognize some locations where your Endometriosis lesions were (or still are) located…or recognize the phrases from your op report(s).

To quote my favorite cartoon growing up, “And knowing is half the battle.”

Endometriosis & the Appendix

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Diagram of the appendix

Here I go again, once more intrigued by Endometriosis growing in odd places inside the body.  Today I’m going to focus on the appendix.  I’ve read that many Warriors have their appendix removed because physicians may confuse Endometriosis pain for the symptoms of appendicitis.  But on Tuesday an article hit my email about Endometriosis growing on the appendix…and I became obsessed.

Please remember: I don’t write this to scare you, or freak you out, or say that all of your right-sided abdominal pain is from Appendix Endo.  Take a deep breath – I like to document these things in case anyone would like to discuss it further with their healthcare providers so they may be aware during surgery.  Appendiceal Endometriosis is considered extremely rare and it is suspected that only 1-3% of all cases of Endometriosis involve the appendix.  But…knowledge is power.

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