Back pain can be caused by misaligned pelvic floor muscles, Endo lesions in the cul-de-sac or other areas of the body, adhesions, and even (in rare cases) lesions directly affecting the spine or nerves.
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.
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.
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.
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.
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.
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!
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.
Have you heard of pelvic floor dysfunction? I hadn’t; not before meeting women who suffer from it. And I’d never heard of a pelvic floor before that, either. We’re going to focus today on pelvic floor dysfunction in women (although men can get it). But what is it?
The pelvic floor is made up of a lot of little muscles, nerves, and tissues all working together for your body to function. Imagine it as a tightly-woven basket at the underside of your pelvis, sweeping from front to back, and side to side. Not only does it support the organs of the pelvis, but it also wraps around the urethra, rectum, and vagina. When these muscles, nerves, and tissues stop working properly (they are too tense or too lax), it’s called pelvic floor dysfunction. It can cause pain and difficulty with urination, defecation, intercourse, and lower back pain.
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:
You’ve likely heard that Endometriosis can grow in all sorts of places inside the body. Well, the bladder and urinary tract are no exception. Endometriosis implants can grow on or inside the walls of the bladder or along the urethra.
Common symptoms patients may complain about with bladder Endo are frequently needing to pee, pain when the bladder is full, painful urination, and an urgent need to pee. Some also suffer from blood in their urine when they’re on their cycles (may be hard to distinguish…given the natural course of what a period does…). This urine-blood may not be perceptible to the naked eye and require a lab test. And as usual, many EndoWarriors only have these symptoms during their periods; others have them 24/7. It should also be noted that many with bladder Endo don’t present any symptoms.