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.
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.
Tharini is 24 years old and was diagnosed with Endometriosis in 2020 and lives in Epsom in the United Kingdom. She wanted to stress with us the importance of tracking your symptoms.
Tharini’s Journey: I was diagnosed with endo last year after suspecting for months. My symptoms include lower back pain and foot pain that really is bad. I also have classic endo symptoms like aching stomach and loss of blood each month too. I would sum up this by saying do not lose hope but merely insist on a appointment and then tests to check for symptoms that are indicative of endo.
It also helps to keep a diary of symptoms pertaining to your specific type of endo, what time of the month they occur etc as well. Never give up in other words, find a doctor who is really smart and caring at the same time.
I want to send a special Thank You out to Tharini for being brave enough to share her journey with us today! And I agree: tracking and sharing symptoms is OH SO IMPORTANT!! ❤ Yours, Lisa.
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.
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.
I’m sitting here going through my very old post-surgery emails and I’ve stumbled upon one from December that made my jaw, once again, drop. A study was published in late 2018 about a woman who was discovered to have an endometrial cyst inside her pancreas…WHAT? It’s super-duper rare.
As usual, this isn’t meant to scare you. Just inform you…
As you know…I’m prone to following studies down rabbit holes and satisfy my curiosity. Today is no different! Read on, dear Reader…read on!
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.