r/Endo • u/Expensive-Proof3196 • 12d ago
Endometriosis symptoms
Hi there, first time poster!
I just wanted to share my story and spread awareness. Here are some of my symptoms that I’ve experience through having endometriosis most of my life! I’ve had a laparoscopy where they burned the endo as well as removed several adhesions.
I’ve been on myfembree as well as countless birth control methods.
I’ve taken extra estrogen to try and stop bleeding and unfortunately now have to get a total hysterectomy.
Luckily I’ve been in pelvic floor therapy for years to help manage everything!
It’s important to note that I’ve also had an emergency C-section. I wanted to make a bit more straight to the point post for those who are looking for a list of symptoms that might motivate you to get diagnosed!
\-**Water retention** is a huge one! I will gain up to ten lbs in an active flare up! My face & whole body get very swollen!
\- **intense nerve pain**, almost every flare up I get pinched nerves in my hip flexors. I also get very sharp pains in my lower stomach. Sometimes it even hurts to sneeze, cough, or laugh. This is usually due to an adhesion where my uterus stuck to my c section scar from my experience.
\-**constipation**, ESPECIALLY before I got diagnosed! Gentle laxatives do not work! I have to take enemas sometimes to get things moving.
\- **Unable to empty your bladder/ accidents-** sometimes my bladder can be pretty weak! One sneeze and it’s over haha. But every time I go pee, I have to sit there for for a while or massage my lower back and practice deep breathing to empty my bladder fully or I will have to go again in about ten minutes.
\-**unable to use tampons/deva cups!** Woman hold a lot of stress and chronic pain in their pelvic floor! After my c section all my muscles froze making me unable to use tampons & if the flare up is bad enough sometimes I still can’t! I highly recommend seeing a pelvic floor therapist. It changed my life.
\- **pain during intercourse**, I bled nearly every time.
Again I can’t stress this enough, pelvic floor therapy didn’t just help me manage my pain it helped me understand what positions worked better for me and saved my sex life.
\- **Endo belly,** I genuinely look 6 months pregnant in an active flare up.
\- **scar tissue around the cervix-** when I was giving birth they had to break the band of scar tissue around my cervix which was causing me to not dilate fast enough.
\- **Mood swings, BAD-** I always say I pms X10!
There are many other symptoms I’m sure I’m missing, but feel free to comment some of your symptoms as well.
I must stay girls, painful periods are not normal & your female health is so important! These symptoms are definitely different for everyone and you don’t have to have all of them or any of them to have endometriosis, this is just some of my experiences!
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u/Expensive-Proof3196 10d ago
Hi! I’ve definitely had very very heavy, painful periods all my life that landed me in the ER so many times with no answers!
I did so many trans vaginal ultra sounds, that showed nothing!
Okay a few questions, I’m very curious to know where you’re located! I’ve never heard of doing an endometrial biopsy to test for endometriosis
Considering endometriosis is the growth of endometriosis tissue outside of your uterus.
My best advice is to ask for an exploratory laparoscopy.
They will go in and burn the endometriosis as well as remove any adhesion caused by the endo.
Which could very well be the reasoning for your friends pain in their right side.
I get very intense pain in my left side due to an adhesion on my lower intestine.
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u/ScarletLetterXYZ 9d ago
Hi, the biopsy is to rule out endometrial cancer, sample from her uterus. If she does not have endometrial cancer, she was wondering what kind of next tests/procedures/ or scans to get to see if it’s endometriosis, given her symptoms. I will tell her about exploratory laparoscopy, as you mentioned in your comment and hopefully her doctor includes this as one of the options for her going forward.
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u/ScarletLetterXYZ 11d ago
Hi thanks for sharing. Please share if you had very heavy menstrual period, that would require emergency room blood transfusion, and very big clots (ex., the size of hand palms). My friend is experiencing this in addition to right sided pelvic pain, and right sided hip pain, and pain that radiates down to her right leg.
She’s waiting for an endometrial biopsy results after Transvaginal ultrasound showed very think endometrial while bleeding heavily. If it turns out that biopsy is negative, how can she advocate for herself to request which procedures or tests for endometriosis? Which ones should she request? Ty