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Unusual endometriosis symptoms

Can we talk about the unusual or less talked about symptoms of endo? I'm curious about anyones similar experiences. I have bladder endo as well and get severe burning, urgency, and pain with flare ups. Like a UTI times a thousand. Along with the "norm", I have some symptoms that stump doctors. Chronic fatigue, recent EXTREME hot flashes, dizziness, weakness, headaches and migranes, brain fog I guess is the best way to describe it (feeling like I'm high or in a dream for no reason, especially followed by anxiety), horrible muscle knots, stiffness, nerve tingling and numbness, and pain, especially in my shoulders and neck. Those are some that have been standing out to me lately. Not to even mention the stomach issues! What about yall??

  1. Nikk993 Thank you for this! I have interstitial cystitis, so I’m right there with you with the bladder issues. Though, no one can explain WHY I have an inflamed bladder (they’ve looked for endo leisions but found none). And I have a lot of hard-to-explain symptoms, too. I wrote more about that here: https://endometriosis.net/living/unusual-symptoms

    My issues are very similar to lupus, RA, and MS. But I’ve tested negative for autoimmune conditions. I’ve never had an MRI for MS, but my doctor doesn’t think that’s what‘s going on because I don’t have weakness or heat intolerance. I do get serious muscle tension, numbness and tingling in my fingers, legs and feet, and pain in my neck, often on one side. I’ve seen chiropractors, physical therapists, etc. Sometimes they help. But mostly my symptoms are dismissed as stress-related or central sensitization.

    My sensory issues are sometimes related to a migraine attack. And I know people with endo are more likely to also have migraine. I’ll get vertigo, blurry vision, brain fog, irritability, extreme fatigue.

    I sometimes get hot flashes, but I’m actually more likely to get cold chills and symptoms similar to Raynaud’s. I’m 41 now, and some of my symptoms are being blamed on perimenopause. It’s actually similar to what doctors told me as a teenager — that my symptoms were just related to hormones post puberty. And I’ve also been told I likely have central sensitization.

    1. I also suffer from all of the above. Additionally I have Raynaud's

      1. I also have symptoms of Raynaud’s. Sometimes I have to run my toes under hot water just to bring the circulation back. I also have battery-powered heated socks I wear around the house in winter. What have you found to ease your symptoms? - Keri (endometriosis.net team member)

      2. so sorry you deal with all of these things too 🙁 I just wanted to reach out and say I am sending you hugs. How have you been feeling lately? -Kimberli (advocate)

    2. Some of your symptoms (fatigue, hot flashes, dizziness, weakness, headaches, brain fog) remind me of my dysautonomia symptoms. Might be worth investigating that. I also have migraine, and some of the symptoms you mentioned overlap with that. I'm sorry to hear you're struggling with all of that! ~Katrina, Endometriosis.net Advocate

      1. wow- reading this, I feel like I could have wrote it. I seriously deal with and understand all of these symptoms so very well. Just like Keri said, I too have Interstitial Cystitis, so I have all the bladder pains and constant feeling of a UTI, without really having one. It is absolutely exhausting and so frustrating. I do also have PCOS and blood work has recently confirmed I am dealing with Hashimotos, so all of that can definitely explain my fatigue. A while back I was diagnosed with fibromyalgia, so I never know if some of the symptoms I am dealing with have to do with that as well.


        I have SO many stomach issues too, but still not 100% sure what the heck is going on there. I think endometriosis is a big culprit with this. I have a lot of rectum pain, right side pain, and just stomach pain in general. So I am thinking endometriosis is somewhere in those areas.


        How have you been feeling lately? -Kimberli (advocate)

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