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: TR

They say sciatic Endometriosis is very rare, but TR has it. Diagnosed this year, at the young age of 24, she shares her story with us.

TRs’ Journey:   For several months I have had endometriosis in my legs and feet as well as in my bladder and lower back. My particular type of endo is the sciatica type. Every month I started feeling warm tingly pain especially in my stomach, legs and feet. Even on normal days I still had pain in my thighs. Sciatica endo is not the most commonest type of endo so answers were kind of hard to find online etc.

Words of Advice:  Persist in diagnoses.

If you would like to reach out to TR for more information about her sciatica Endo, or her journey, she’s allowed me to share her email with you today.

I want to send a special Thank You out to TR for being brave enough to share her journey with us today!!  Know that you’re not alone with your sciatic-Endo. Although rare, it does happen. I hope you’re able to find relief.  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 on our blog.  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.

Share Your Story: Ami

Quote: the surgeon said in passing that he removed some endometriosis

Ami was diagnosed with Endometriosis when she was 47 years old.  Now a year later, she shares with us:

Ami’s Journey: One year ago I experienced a worsening pelvic prolapse (following a uterine prolapse years ago) and simultaneous debilitating sciatica. All doctors insisted the two were unrelated. Although muscle atrophy contributed to both. I underwent several months of physical therapy and 2 epidural steroid injections to treat the sciatica and then prolapse repair in December.

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Share Your Story: Shadoegirl19

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Shadoegirl19 was just 16 years old when she learned she had Endometriosis.  Now 48 and living in Michigan, she shares her story with us today…and uplifting encouragement.  Not only was she able to have three beautiful children prior to a hysterectomy, but she, unfortunately, was also diagnosed with inoperable Endometriosis of her spine.  However, she remains incredibly strong and supportive.

Shadoegirl19’s Journey:   At the age of 16 I lost my right ovary to Endometriosis. I had suffered from about 13 (the on set of my periods) until the day my ovary basically exploded from all the endometriomas & scarring. The surgeon had never seen anything like it (lucky me).

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Share Your Story: T.E.

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: Pudendal Nerve Pain

A diagram of the pudendal nerve in a female human

One of our readers (who shall remain anonymous) asked if we could look into a topic: “Pudendal nerve pain-when is it endo and when is it not? Or is there even a way to know?”  So, here I go off to learn things and hopefully share a bit of that newfound knowledge.  And since this blog entry is Endometriosis-related, I’m going to keep the anatomy female (although men have a pudendal nerve and can also suffer from these symptoms).

Where’s the Pudendal Nerve?

The pudendal nerve is located back by the tailbone, and extends along the pelvic floor and around the pelvis, toward the rectal, gluteal, and clitoris areas.  There’s two: a right and a left pudendal nerve.  One or both pudendal nerves may cause issues, which we’ll get into right now!

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Share Your Story: C

text that reads "I just wish there was a cure."

C. was 23 when she was diagnosed with Endometriosis.  Today she’s 29 and living in Staffordshire in the United Kingdom and she wants to share her story with us.

C’s Journey: I suffer with endometriosis, every day is a struggle with all the pain I have and feeling tired all the time. I also have a lot of hip and leg pain especially at night lying down its like having pressure in my thighs and hips and start getting sharp pains so I have keep moving all night from the left to the right side. And I have sciatica in my back sometimes. I’m not able to do much exercise either because I’m always feeling tired so I’m putting on weight.

The Last Word: I just wish there was a cure for this horrible disease, to be pain free and enjoy life and enjoy being a mum.

If you would like to contact C., you can email her here.  I’m sure she’d love to receive some encouragement and hope.

I want to send a special Thank You out to C. for sharing her story with us today.  May today be a better day than yesterday.


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.

Endometriosis & Leg Pain/Sciatica

Woman soaking in a bathtub. All we see are her legs.
Photo by Elizaveta Dushechkina on Pexels.com

I have heard from several EndoWarriors that they suffer from leg pain; whether it be their hips, upper thighs, or radiating pain down their leg(s).  Today we delve a bit deeper into leg pain complaints and Endo.  Have upper leg pain? Lower back pain? Tailbone pain?  So do a lot of people…but so do a LOT of women with Endometriosis.  A 2011 study surveyed 94 people with Endometriosis.  Of them, 51% complained of leg pain.  Cysts may also be contributing to leg and lower back pain. And although you may have some of these symptoms and think you have sciatic Endometriosis…please be aware that it is considered incredibly rare. And it may just be that your symptoms are a result of pelvic floor muscles being too tight (pelvic floor therapy may help) OR that adhesions and/or Endometriosis has pulled your anatomy out of whack. But, please, do read on:

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Endometriosis & the Spine

human spinal column

Endometriosis and THE WHAT?  You mean to tell me that this disease can be found on your…spine?  A disease typically diagnosed by gynecologists can grow there?  Okay, now this is like some bad sci-fi horror film…But alas…it’s true.  A girlfriend dropped the bomb last week that she has it on her spinal cord.  So now it’s time to pick my jaw up off of the ground and hit the books.  What the hell, Endo.  Really? Is nothing sacred?

Spinal Endometriosis:

Endometriosis on or in the spinal cord, vertebrae, or nerves is considered extremely rare.  However, it has been found to be wreaking havoc for many women.  It can cause symptoms of back pain, weakness, incontinence, sciatica pain, radiating leg pain, groin pain, and monoparesis (weakness to the point of near-paralysis), just to name a few.  These symptoms may always be present, may only be present during your menstrual cycle, or may worsen during your menstrual cycle. On top of those symptoms, the Endometriosis also does it’s usual thing: inflammation, scarring, creates pain, etc.

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