Hot mess?



Pain has been back twice. Last Friday & today.  Bad today.  And right now, my blood pressure is 77/45.  Blood sugar is 67.  And exploratory lap is scheduled for Monday.

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  1. K, so the pain is in your pelvis, but your BP drops when you have it? Do you think the BP drop could be contributing to the pain or is it in response to the severity of the pain? Does it improve in any position? I’m curious to know everything about it; though perhaps I’ve lost track from prior posts. Did you have a salpingoophorectomy or just salpingectomy? Oooooh I really hope it stops.

  2. I think the low BP is from the pain med. it’s one of the reasons I don’t like taking “the hard stuff”. Position helps, but i need my legs practically on my chest when it’s that low. I hadn’t considered if the BP was contributing to the pain. I know that unmediated, when I’m in this sort of pain, my BP is up usually. Unless I’m at that pass out from pain point.
    They took the tubes but left the ovaries.

    I was hoping like hell that it stopped, barring that, I was hoping that there would be a less invasive way to figure it out. I’m not convinced there isn’t – it may turn out to be GI or bladder, but since there’s also a very good chance it’s adhesions and since adhesions don’t show up so well onion imaging (unless they’re causing a full on obstruction), exploratory lap is the way we’re going. I’ve had pain – endo pain, adenomyosis pain, spasm-y GI pain, joint pain, migraines, leaking spinal tap headache pain, and broken bone (albeit small bone) pain. This is nothing like any of them. I can’t live with this.

  3. Hmmm. Did they do your ultrasound while you were having the pain and make sure the ovaries had arterial and venous flow? Just ignore me if the answer’s yes; don’t waste precious energy.

    Makes sense it could be the pain med. That’s a catch 22. I’m sure you tried maxing out on ibuprofen and tylenol first….sorry that i’m forgetting all the details.

    Those of us with the supposed hypermobility/eds issues are supposedly higher risk for interstitial cystitis. Random thought, have you ever tried an antihistamine like Benadryl for the pain? If you have whacky mast cells like your rashes suggest; lots of ppl with mast cell issues have horrendous pain that those meds sometimes help. Sometimes too though, the pain’s too bad and they need more potent stuff….Just a thought as it would be a safeish thing to try prior to surgery and would be totally awesome if it helped. You probably already did though, so again , just ignore me!

  4. They did do the ultrasound exams when I was having pain, not sure if it was structural only or also looked at blood flow. Good questions, I totally didn’t think to ask.

    I’ve actually started taking benadryl and Zantac at night. In part, after fpreading up on the mast cell stuff from your blog (thanks!). Helps with some of the daily studf I think, some of the chronic rashy/itchy spots have gone away. But this pain started post Benadryl. My god if this is IC I think I’ll need to quit my job. Seriously, one more “functional” illness is one too many.

  5. Typos provided by iPad keyboard and insomnia. 😉

  6. Ooooh too bad. I wonder if a mast cell stabilizer would help you. Have you noticed any association with diet? Though I realize it very easily could not be mast cell related especially with your prior pelvic surgery, but they just do so many bizarre things, I never know what they’ll do next!

    My sister had/has IC and found antihistamines, lots of water and sometimes cranberry juice helped a bit but she pretty frequently still has pain. She’s also a flusher, itcher etc like me

    I hate that you’re having such severe pain. You are doing a great job of coping!

    • I have wondered about that too, the mast cell stabilizer that is. I’m seeing Big Ass Teaching Hospital’s allergy folks in mid-May, going to ask about mast cell activation stuff since it was where Endocrine left off. I have a good friend with endometriosis adenomyosis and IC. She told me that during one of her laps (to remove endo implants/adhesions) they did a hydrodistention thing with her bladder, apparently it can be helpful in diagnosing IC/bladder wall problems. I’ve read up on it a bit and it seems like there’s a move away from doing that for diagnosis (not everyone with IC will have features you can see with this procedure, figures…) there is apparently still a possible therapeutic benefit to it.

      So I’m going to ask my surgeon about it. Guy isn’t gonna know what hit him in that little pre-op window: “yeah, I want you to look here, here, and here, and then do this and that…” Because what I’d hate is to have an undiagnostic lap, only to find out later if they’d just looked here or done that, it would have helped.

      Fortunately, the severe pain is very episodic right now which I think it helping the coping. I.e. I haven’t had it sustained since Friday. I’ve had stabs since then, fleeting and intense reminders that something’s still up, which send me scrambling for the pain meds. If it weren’t for the windows of relatively low pain, I would be in a very dark place indeed.


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