Share Your Story: Leidy

A woman standing in front of a grassy lawn wearing a pink sweater, gray hat, and sunglasses

Leidy lives in Germany and was 35 years old when she was told she had Endometriosis. Now 42, she would like to share her story with everyone cares to read it. A battle which literally spans the globe in search of answers, a series of numerous misdiagnoses, and Leidy is one hell of a Warrior.

Leidy’s Journey:   I am now 42 years old but since my first period, I have had problems. 

My main problem is in my bowels. Which misled my specialists to find the correct diagnosis. The only issue I had, related to my period, was irregular bleeding. 

Each month I bled during my ovulation. My period lasts sometimes more than a week. And I bled during sexual intercourse. The pain during the period was not severe and Ibuprofen usually was enough to alleviate the pain.

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Share Your Story: Tharini

blank journal
Photo by MESSALA CIULLA on Pexels.com

Tharini is 24 years old and was diagnosed with Endometriosis in 2020 and lives in Epsom in the United Kingdom. She wanted to stress with us the importance of tracking your symptoms.

Tharini’s Journey:   I was diagnosed with endo last year after suspecting for months. My symptoms include lower back pain and foot pain that really is bad. I also have classic endo symptoms like aching stomach and loss of blood each month too. I would sum up this by saying do not lose hope but merely insist on a appointment and then tests to check for symptoms that are indicative of endo.

It also helps to keep a diary of symptoms pertaining to your specific type of endo, what time of the month they occur etc as well. Never give up in other words, find a doctor who is really smart and caring at the same time.

I want to send a special Thank You out to Tharini for being brave enough to share her journey with us today!  And I agree: tracking and sharing symptoms is OH SO IMPORTANT!!    ❤ Yours, Lisa.


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.

Endometriosis in a Hooded Capuchin

hooded capuchin eating fruit while sitting in a tree

In January of 2021, the Journal of Medical Primatology published an article about a hooded capuchin (a primate) that developed Endometriosis. They were able to “successfully” treat it with surgery and medical management.

This is only one case of a growing list of cases of spontaneous Endometriosis developing in non-humans: including several other primates and a dog. Animals with Endo break my heart: they cannot fully express any pain they may be in, or offer opinion or consent for medical procedures…and it just makes me want to weep.

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Share Your Story: Jazz

text that reads: "don't be afraid to ask for help. Always trust your gut. Don't be afraid to ask stupid questions."

Diagnosed in 2017, Jazz shares her Endometriosis story with us today.

Jazz’s Journey:   I am 23 and was born in Northampton, UK where I continue to live with Cerebral Palsy and Stage 1 Endometriosis. I was born with my disability and I was diagnosed with Endo in November 2017. At 16 I started the pill, Femodette, because my periods were really heavy and really painful. I was given Mefanamic Acid to help relieve the pain and it did nothing. I was taking Paracetamol and Ibruprofen and was even told to stop crying in school because “it sounded like I was giving birth.” I was given another pill to take after Femodette failed to work called Regevidon.

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Share Your Story: Kat

An IUD and scalpel with text that reads: "I have a decision to make: mirena or hysterectomy?"

Kat was diagnosed this year with Endometriosis at 47 years old.

Kat’s Journey:   Over the last 2 years my cycles that were getting very light and very spread out (I almost went 11 months) have been getting worse. My cycle is never the same… it will go 50 days one month and 35 the next. Sometimes I get the incredible cramping but no bleeding. When I do bleed I soak a tampon in 30 minutes. It has been like this for the last 6 months.

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Endometriosis & the Pancreas

Diagram of liver, stomach, pancreas, and gallbladder

I’m sitting here going through my very old post-surgery emails and I’ve stumbled upon one from December that made my jaw, once again, drop. A study was published in late 2018 about a woman who was discovered to have an endometrial cyst inside her pancreas…WHAT? It’s super-duper rare.

As usual, this isn’t meant to scare you. Just inform you…

As you know…I’m prone to following studies down rabbit holes and satisfy my curiosity. Today is no different! Read on, dear Reader…read on!

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New Case Study: Endo … in the buttcrack

Buttcrack

A study published online in June 2017’s edition of the Journal of Gynecology, Obstetrics and Human Reproduction discusses a case of Endometriosis in a very peculiar and very extra-pelvic location: the buttcrack!.

A 24-year-old woman in France went to her doctor because over the past 2 years, a spot in her buttcrack would bleed during her period. She also suffered with painful periods, painful sex, diarrhea, and constipation. Upon examination, her doctors found a 3mm blue nodule in her buttcrack.  They immediately suspected cutaneous Endometriosis because of her pain, symptoms, and the fact that it bled during her period.  An MRI seemed to confirm their suspicions, but the patient refused excision of the lesion and no biopsy was conducted.  Instead, she opted for hormonal treatment.  Her choice of treatment offered her some relief.

They authors stress that any blue-ish nodule with similar symptoms be suspected of Endometriosis.  And they also stress the uncertainty with theories on how it ended up…there.  A very interesting thing…and just one more weird place on the body that it can manifest.

Resources:

Journal of Gynecology Obstetrics and Human Reproduction (Abstract; Oct. 2017) – Spontaneous Intergluteal Cleft Endometriosis

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Share Your Story: Stephany

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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Endometriosis & the Appendix

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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