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Gianna321

Updated 11mo ago

Stage 4 Endometriosis Symptoms - Need Advice

Anyone with stage 4 endometriosis that can tell me what their symptoms were? I believe I’m at that point but idk if I can hold on until my surgery date😖

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wise

2y

I didn't know I had stage IV endo until after my surgery, but I can tell you my periods were a full body experience. Every muscle hurt, especially my legs and lower back, I had insane nosebleeds (that I now know were endometriosis in my sinuses, not anemia related like I thought), the bloating felt like it happened everywhere, but especially in my face and belly. it was awful. I would throw up and pass out from the pain, I would be literally paralyzed from the waist down (sciatic endometriosis), and I constantly felt like I had to go to the bathroom. I stopped my periods with birth control and I don't regret it for a second lol, that was hell on earth and in my body
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Gianna321

2y

Wow! That sounds very traumatic as well!!!
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Havana

2y

Heavy periods, the cramps were not normal, I would pass out from the pain, I felt like I had the flu or something the first few days as well. I went trough every birth control and they would be good for a while then I would just have a month long period sometimes then I’d switch to a new birth control and go through the same cycle. I had painful bowel movements, my bladder hurt plus I had all types of urinary issues. Bloating and this part on my belly that I could never lose no matter how much I worked out (endo belly). I also developed pain on my labia and in my vagina and had to have pelvic floor therapy, turns out it was because the endo was on a ligament that connected to the vagina. It was just not a good experience. I’ve had 3 surgeries and now I’ve been in chemical menopause for 4yrs because it’s the only thing that remotely helps.
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Gianna321

2y

Did you have digestive issues at all??
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Spooxk

2y

Extremely heavy periods ever since puberty—I mean bleeding through a super tampon within 2-3 hours. With that, extreme cramps that’d keep me up and make me sick to my stomach. As mine progressed and got at its worst, (it was growing on my intestines turns out my colon was literally hanging the wrong way from all of the endometrial tissue like it was caught in a spiderweb!!!) I couldn’t keep any food down—I lost my appetite completely and when I’d try to consume anything other than liquids I’d throw up within an hour or two. Very sporadic and sharp shooting pains within the abdominopelvic region, same pains in the region between the vagina and anus, sex became really painful almost overnight, eventually nerve compression in my hips that was causing a lot of weird nerve pains down my legs. Hope this helps lol
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Jojo1084

2y

I am seriously considering surgery at this point. During my period, I have terrible pain. If level 10 is going to the emergency room, I’m usually at an 8-9. I have low back pain, rectal pain, painful bowel movements, pain that sometimes makes me feel nauseous. I’ve been experiencing constipation too. It can be hard to sleep or work when the pain is so bad. Thankfully, I only experience this for 1-2 days and then it subsides some. Usually once I get past ovulation, the pain is almost completely gone. It’s rough. I know others have it worse, but I also know that I don’t have to live with this pain and I’m doing something about it. I have an ppointment on Tuesday with an endo surgeon. 👍🏼
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Minno

1y

how did your surgery go? I had mine for very similar reasons yesterday, but they found no endo so now I’m just left confused☹️

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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