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Different types of pain

I’m 43. I was diagnosed with stage 4 endometriosis in 2020 when I had a hysterectomy. The more I researched, the more all of my seemingly unrelated symptoms made sense. Chronic muscle tension, migraines, frequent UTIs, chronic constipation, exhaustion, numbness, and, of course, pelvic pain. I’ve been experiencing these symptoms for more than 20 years, and no one suggested endo as the cause. They did suggest “low pain tolerance” “just a bad period” or treated me like I was drug seeking if I went to the ER when I could no longer bear the pain. After the hysterectomy, the worst of my pain went away for 2 years. A few months ago, it came back. Now, though, it’s no longer cyclical, it’s all the time, relentless.
Because of this, I’ve tried to pay close attention to what different types of pain feel like, and which I can bear through, which need to be addressed asap, and which I have to manage with a steady stream of meds. Has anyone else noticed that the pelvic pain feels like back labor, kind of combined with a sense of impending diarrhea? The muscle tension I try to fight preemptively, because if I don’t, migraines result. Migraines last a few days and wipe me out emotionally as well as physically. And I’ve noticed a new type of- maybe it isn’t classified as pain exactly, but it feels as if all of my muscles have lost any type of energy source, and they are slow to respond when I need to move. This type of pain is new to me. I’m not sure how to work through it? Or, if the best solution is to not try to work through it? The inside of my arms ache, particularly on the inside of my elbow. Noticing and naming the sensations is helping some, for now, until November, when I can have surgery and hopefully relieve these symptoms. I work as a mental health therapist, and so I try to go to work and give whatever strength and attention I’ve got. It’s getting harder and harder to do. Does anyone have suggestions for how to cope with these different types of pain? Or how they make the decision to go in to work or not?

  1. Sorry to hear you're going through all of this. I'm glad you reached out. I'm 45 and have stage 4 endo as well. I have definitely had rectal cramps that are incredibly painful and wake me up at night. I have to do stretches similar to ones done for sciatica to relieve the pain, and sometimes sitting on the toilet helps. I've also had stomach cramps, potentially like the ones you're describing. Gentle stretching sometimes makes a difference. In terms of the inside of your arms aching and inside of your elbow...has anyone brought up allodynia? When I am flaring, my skin hurts and sometimes NSAIDs help; other times I have to wait for it to pass. The sensation you described of losing your energy source in your muscles reminds me of fibromyalgia. I have had some success from doing different relaxation techniques and resting in general...sometimes my symptoms ease when I give myself adequate rest. I've been known to push myself too much. Could you be anemic? When I had some of my worst fatigue, that was one cause. ~Katrina, Advocate

    1. I’m sorry you’re going through this, but I’m so glad you’re bringing this up. I think this is a question a lot of people with endo probably have. If you haven’t already, might I suggest you talk to your doctor about testing for other conditions. Many people with endo have other health issues including fibromyalgia, Ehlers-Danlos Syndrome (EDS), and autoimmune conditions like lupus, RA, and multiple sclerosis.

      With that said, here’s my experience. I’m 41, and I’ve lived with diagnosed endo since i was 24. I have stage 3 (according to my most recent surgery). In my mid-30s, I started having more of the pains you’re experiencing, including visibly swollen joints and what felt like joint pain in my elbows, knuckles and knees. I tested negative for arthritis (on X-rays), RA (through a blood test), and high levels of inflammation (another blood test). But I might have a mild form of EDS, which is a hypermobility issue that can result in joint and muscle pain.

      As far as my symptom relief goes, I recently had excision surgery which didn’t help with these issues. But I saw a sports medicine orthopedic doctor and physical therapist who are both helping me. I’ve also seen a physical therapist in the past to address muscle tension, which also helps prevent some of the issues you’re talking about about. I also get terrible diarrhea and joint-like pain when I eat gluten, so I’ve gone gluten-free (with the help of my GI doctor and a dietitian). And while I’ve never seen a neurologist, I might some day if some of my nerve issues like weakness continue. That might be worth talking to your doctor about. I hope this helps some, and let us know what else is on your mind! - Keri ( team member)

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