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

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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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 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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Share Your Story: Sarah

text that reads "23 years after first seeking help, I got it

New to San Diego, Sarah was diagnosed with Endometriosis when she was 38 years old, after seeking help for over 20 years.  Today, a year later, she shares her long and difficult Journey with us.

Sarah’s Journey:  I’m home from this year’s Endo March. I met some lovely people, reconnected with new friends (I’m new to San Diego), and learned a lot. One of those lessons was hard. It’s not as simple as saying Endometriosis changed my life or changed me.

It’s that it, along with other health problems, shaped me and, as all of this runs its course, my identity is changing. Parts of what I value about myself have shifted and this time the change is so deep that it may be irrevocable. I don’t know if I can get those pieces of me back. I used to be strong. I used to be fast. I could paint a painting in a day, code a website so that your head spun, learn a skill and build a 16 hour class around it and teach it inside a week.

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Share Your Story: CS

Roses and text that reads "I didn't think I could have Endometriosis"

CS was diagnosed with Endometriosis when she was 34.  Now a year later, she shares the story of her diagnosis with us.

CS’s Journey:  I didn’t think I could have endometriosis because I didn’t have bad menstrual cramps or heavy bleeding. What I did have, were bouts of pretty severe-left-sided pelvic pain. I first started noticing it a few months after I had my child, and I don’t think I have to tell you that I was repeatedly misdiagnosed.

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Share Your Story : MB

Text that reads, "I'm not sure what to do and I am terrified of having to start having surgeries again."

MB was 20 when she was diagnosed.  Now 29 and living in Alabama…her pain is back and she’s not sure how to move forward.

MB’s Journey: I had a baby when I was 18. I got married at 19 and then 6 months later started having bad pains so I saw the gynecologist. She did an ultrasound and test and it was a holiday weekend. They called the end of that day saying there was a mass in my uterus and I need to see the doctor after the holiday. That’s it.

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Share Your Story: Patti

Brunette woman wearing a white shirt standing up against a wall covered in red and green leaves

Patti was diagnosed with Stage IV Endometriosis when she was 21 years old.  Today she is 52 years young and lives in Ontario, Canada.  She continues to suffer, but holds tightly onto Hope and has a wonderful network of supportive and understanding friends and family.  Fight on, Patti.  Fight. On. ❤

Patti’s Journey: My Endometriosis Journey, By: Patricia Anne Young

One day after school, my friend invited me back to her place for a swim. We got changed, and I told her I’d meet her outside, as I had to use the washroom… little did I know I was about to become a “Woman”. I was 12…

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