Share Your Story: L. George

Text that reads "I am not sure what to do next."

L. George was diagnosed when they were 25 years old. Today, at 52, they share their arduous journey with us.

L.’s Journey:   This is really tough to tell, as I have suffered with this awful disease for so long. I barely used to notice my periods in high school. Then, around age 21, the pain became so unbearable, but I just thought it was normal period pain. I never believed in going to doctors or taking any kind of pharmaceutical medication for pain. My mom raised me to never take aspirin or go to the hospital, no antibiotics for the frequent ear infections and bronchial infections I seemed to get a lot growing up. It was not uncommon for me to have a high fever (over 105F) as a child and ‘sweat’ it out, after dealing with it for at least a week wrapped in thick blankets to make me sweat. I never took any aspirin, or other OTC for the pain I felt at age 21.

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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.

When do you decide … it’s time?

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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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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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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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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Possible relief from painful sex or penetration? Vuva Magnetic Dilators.

VuvaTech's welcome kit with literature, two dilatros, lube, and a carrying pouch

Vuva-whata-what?

I found these little pink … things … back in October 2016 when I was experience A LOT of pain with sexual intercourse.  I mean, a lot.  I was desperate.  After reading the reviews on how many others who use Vuva Magnetic Dilators had relief from painful sex, I was hooked.  But…I also couldn’t afford to purchase the kit.  And, let’s face it – I had my doubts about magnets in dilators (dildos?) helping me with anything.

So, I wrote the company.  Tara, the creator and founder, immediately wrote me back.  She, too, suffers from Endometriosis.  She also suffers from Vulvodynia and said her magnetic dilators helped her tremendously with her vaginal and pelvic pain, especially with sex!  AND – she offered to send me two dilators for free because she truly believed they would help and wanted to help other’s in pain.

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