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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EndoBelly: Before & After Pictures

One of our local San Diego EndoSisters, Michelle, had a flair-up of EndoBelly yesterday afternoon.  If you suffer from these, you know what we’re talking about.  If you’re not sure what it is, I tend to think it’s the disease inside my body inflaming and rearing its ugly head.  The bloat is severe.  The pain is thick.  The skin is stretched to an extreme.  The pants must come unbuttoned.  People would ask “When’s the baby due,” having NO idea I wasn’t pregnant.  When it happens, I must pop a pain pill and find comfort in a bed and a heating pad.  And, for me, it can pass after a few hours or a few days.

But what a difference a day makes.  Michelle granted me permission to share her image here.

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On the left (in the red) is yesterday’s EndoBelly in all it’s swollen glory.  And on the right (in the black)  is today’s deflated and back-to-normal belly.

What a difference a day makes!  And these before & after photographs bring a visible sense to an invisible illness.  Thank you, Michelle, for allowing me to share your photograph.  And your pain.  Love you, woman.

Do you suffer from EndoBelly? Tell us about it in the comments below.  Anything help you cope ’til the swelling subsides? Share away!

Endometriosis in Rhesus Monkeys

Baby and adult Rhesus monkeys

In the past, I’ve written about Endometriosis being found in two mandrillus sphinx,  a German Shephard and cynomolgus monkeys.  I know when I think of Endometriosis, I have to remind myself that any person, including cis-men can develop it, as well as animals.  A study hit my inbox this morning about monkeys, rhesus macaques, developing Endometriosis.

The 2017 study published in Primate Biology discusses rhesus macaques (aka rhesus monkeys) that were housed at the Biomedical Primate Research Centre in the Netherlands and the New England Primate Research Center in the United States.  Not only did the study discuss the spontaneous development of Endometriosis in these creatures, but it focused on the genetic similarities between humans and these monkeys in the hopes of continuing the studies of finding genetic links to the illness.

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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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Endometriosis & Salt/Sodium

wooden mortar and pestle filled with salt

I enjoy salt.  Love it, actually.  And one night my Jim asked if I thought salt altered my Endometriosis at all.  We’ve all heard too much salt is a bad thing for blood pressure, watch your sodium-intake, blah blah blah…but I didn’t care – I love my salt.  Well, his question stuck with me over the months and it’s finally time to look into it.

I’d always thought salt and sodium were the same thing…nope.  Table salt is a blend of ingredients, including sodium.  Sodium is a natural mineral.   Sodium helps our bodies balance electrolytes and fluids and is mainly stored in our kidneys. We pee out any excess sodium our body doesn’t use.

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Share Your Story : Melinda

Guyanese woman in a blue shirt and necklace

Melinda lives in Guyana in South America and was 35-years-old when she was diagnosed with Endometriosis.  Now 40, she has started an Endometriosis Support Group in her country.  May she bring the government, the women, and the medical professionals together to raise Endo awareness and improve healthcare for the Guyanese citizens!

Melinda’s Journey: 

🌅 Let me begin by thanking Lisa Drayton from Bloomin’ Uterus for giving me that little nudge I needed to start this Endo conversation in Guyana. My journey with Endometriosis has been a long and very painful one.

During the latter half of my teens I started having severe pains, heavy bleeding, bloating, lower back pain and constipation during my menstrual cycle. The pain was so intense I would sometimes faint.

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2nd Surgery pending…

operating room set-up with da vinci surgical machine

This morning I found out Surgery No. 2 is imminent, thanks to my Endometriosis. The date will be sometime in September; I’ll know more in a few days. I met with my doctor today to discuss my ongoing symptoms and worsening pain.  After a long talk and history, an a transvaginal ultrasound (OUCH), and another looooong talk in his office: he felt it’s time to peek under the hood.  I knew going in today that the surgical option was likely it. I wish we could tell if it was present in other ways.  But nope.  My CT was normal.  My US was normal.  But, as you and I both know, it may not always show up on imaging studies.  My symptom history is what convinced him:

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Share Your Story : Alexandra

Woman with brown hair wearing a shirt that reads "Fight like a (yellow ribbon) girl."

Alexandra is a fellow blogger out of Brisbane, Australia.  Today she share’s her Endometriosis journey with us.  She was diagnosed when she was 20, and now five years later here she goes, starting us out with a *bang*:

Alexandra’s Journey: “Uterus.” There, I said it! Uterus! Periods. Ovaries. Fallopian Tubes. Bleeding. Tampon. Rectum. Hormones. Bladder. Cervix. Menstruation. Vagina. Discharge. Pelvis. Pads. Endometriosis. Awkward.

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