Endometriosis do you also have upper abdominal pain ?

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I have had abdominal pain for 2 months now both upper and lower. I have had every test possible even with my gi doc. I have had ct with contrast ct without upper gi endoscopy, MRI with contrast bloodwork all comes back normal. I finally go to my gyno because the one thing that did show up was cysts and fibroids but he said we would just keep an eye on them. He did tell me I was diagnosed with adenomyosis 5 years ago when he did my ablasion for some reason I don't remember him telling me that. Anyway what I was wondering is did anyone on here with endometriosis have upper abdominal pain also?? I'm worried because mine is also upper that it could b something else so I'm scared but it is the same kind of pain. Can someone please help me out?? Thank you!

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  • Posted

    I too have been having abdominal pain for nearly 6months now and also had loads of tests, scans and all sorts with nothing at all found. My initial pain started under my ribs on my right hand side (then months after to my pelvis), so endometriosis was never mentioned until just before xmas. I've now been reffered to a gynaecologist, awaiting a scan on the 26th, followed my an appointment with him and a potential laparoscopy. I've read that you can get endometriosis of the lung which causes upper abdominal pain. I've not been diagnosed yet but strongly feel that it endometeiosis that i have (after all loads of things have been ruled out) so i will let you know. Good luck with finding out. X

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    • Posted

      Hmmm my gyno actually put me on the pill for 2 months n then if that don't work were gonna do a laparoscopy. So hopfully they will see wherever it is while they r in there if it's what it is but with all of these other tests coming back that nothing is wrong I'm assuming this is what it has to be. Please keep me updated. Do u have upper abdominal pain?

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  • Posted

    They didn't overlook the obvious did they, i.e., a test for UTI? I mention this because my UTIs no longer come with screaming pain only on urination, nor am I limited in output, but an upper & lower abd pain is the only symptom. Doesn't mean you don't have endo.

    Endo in the lungs is possible but it's rare. Far more common is referred pain, pain inflammation, and other things starting to hurt from tensing up with all the nearby pain. Y'all might consider stopping all Google symptom searches. Google's full name on med stuff is Quack QUACK Google, and he'll terrify you & drive you nuts.

    I've got 2 big lung diseases & in 20 years and 7 different pulmonologists I've never met a lung doc who's seen endo in the lungs in a known or undiagnosed endo patient -- not even when they were students in teaching hospitals. It does happen, but it's not common.

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    • Posted

      Hi sitar. They did test for UTI I think they did every test possible. I'm not saying it is in the lung it could just be endometriosis sometimes maybe people just get pain in different places I get it both lower and sometimes upper so idk. Like I said I've already been diagnosed with adenomyosis. I'm basically just wondering if anyone else with endometriosis on here has experienced upper abdominal pain also. It's just so frustrating not that I want there to b something wrong but I just want my life back n not have 2 live like this anymore! 😢

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    • Posted

      I also have adenomyosis and am post tubal ligation and endometrial ablation.  I have upper and lower abdominal pain, back pain, fibroids and cysts.  My research found that these two procedures set women up for endo, cysts, fibroids, and tubal issues.  I am now being evaluated for a swollen tube that was observed on ultrasound. 

      I don't have any solutions to share, but I wanted to reach out to say that I have a similar pain pattern.  I hope you will get some answerssmile

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    • Posted

      Ty so much for your response Harris. It relieves me to hear that someone else is also having the upper not that I'm happy you r having the pain but you kno what i mean. My gyno gave me the pill it's been almost a month has done nothing so I'm assuming I'm gonna be doing the laparoscopy and I have never hoped to have something wrong with me before so much but I'm hoping it's endometriosis just so I have an answer for this pain and they can take it out and I can have my life back. I have 3 boys and an awesome husband has put up with me. Ty so much for your response!

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    • Posted

      It ain't an easy name, and auto-mistake gets us all. No problem.

      Different women do get pain in different places, and nobody thus far can explain why some get pain in different areas if there aren't endo spots there. I'm pretty sure that there've been some women on here with upper pain in the last year. Maybe they'll pop up. Many folks only come on during the week --must have more of a life than I do-- so perhaps come Monday they'll be on. I can't recall whether anyone has been found to have endo in the lungs.

      What I was not saying was this: I hope and pray that neither of you has it on your lungs. I've got 2 lung diseases and hope endo never comes back but I cannot imagine the pain & impact of endo on a lung or 2.

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    • Posted

      Wanting a name for the agony is normal. After 3 agonizing years of trying to find answers, the doc who did my lap remarked that i was a different person after the diagnosis. She had only met me a week or 2 before & I was really ticked off at ob/gyns by then, all the more so because I had to switch to a gastroenterologist to even hear the word "endometeiosis."

      We understand wanting a diagnosis. I always wish it would be more curable than endo.

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    • Posted

      I understand u aitarg I'm not even sure endometriosis would have been brought up if I dident bring it up it was like I had to do my own investigation. I was just getting so frustrated that none of the docs could fig anything out n like I said not that I want anything to b wrong but I know this pain is not in my head. When my gyno told me when he did my ablasion and I had the adenomyosis I honestly don't remember him even telling me that. I'm just sick of these doctors looking at me like I'm nuts when I finally at Christmas eve dinner was talking my nephews gf was like are u sure you don't have endometriosis?? I'm like what is that and she explained it to me because she had it I'm like omg and this is how all this came about. I'm sorry that you r going though your lung problems that has to b very scary. 6 months ago they found a very small nodule on my lung I had a very bad cough for like a month I'm a non smoker never smoked I'm only 43 n I freaked out my doc said it was prolly just cause I was sick thur I just got a ct scan to see if it was gone hoping it is waiting for the results soo I can't even imagine what u go through

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  • Posted

    Hi Joanne

    I am so relieved but sympathetic to read your story x

    I have been having upper abdo pain since Oct 2017 and it has worsened lately under my right rib and all the way down with a strained feeling in my groin ...I moved towns so had a new GP surgery who tested urine as general health check and found blood in the test ...so I went back to the GP who looked at my Gynae notes from a laparoscopy in Sept 2016 which said I had mild to moderate Endo which i was told about ...but very close to my Ureter which I was not aware of ! I am now waiting for ct scan results from urology and if nothing shows it's back to the GP to be referred 're bowels or gynaecology. I am so worried if its anything else as the aching is there all day and night !

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    • Posted

      Hi Zoe! I would try not to worry to much I have had ct scans with and without contrast mris and everything has came back fine. I am still having the pain. I went to my gyno a couple months ago and he did put me on the pill to see if that would help at all it has not! I do have adenomyosis I go Wednesday for my post op for my laparoscopic surgery to see if I have endometriosis I’m assuming I do sense everything else came back fine and I also have cysts n fibroids. I have never prayed so hard to actually have something wrong with me because I want it to be there so I can get rid of this pain. Also I have been doing a ton of research and there is a thing called diaphragm endometriosis it’s rare but I have a lot of those symptoms. I have been dealing with this for a long time and with docs finding nothing I kinda was starting to feel like I was dealing with a losing battle so I did a lot of my own research! I kno it’s hard but try not to worry to much
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    • Posted

      Thanks Joanna,

      I guess it's the way of thinking as I know I have endo so I don't put it down to anything else at this moment in time.! I wish it could be diagnosed at this basic level Inc scans without worrying about CT /MRI SCANS .

      I have not heard of diaphragm endo so I will look into it , thank you x

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    • Posted

      I feel like now a days we have to kinda b our own person pushing for our health problems as bad as that sounds. This pain I deal with daily had taken me away from a lot of my daily things bags I enjoy and I feel it has taken a lot of my life away this past year and I’m not just willing to just stand by and let that keep happening because the doctors just wanna give up and just say nothing is wrong that is just not ok with me.  I do hope u find some answers and I’m always here to talk if u need someone you r more then welcome to private message me ❤️
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