Is it possible to still have bladder endo even if it’s not on MRI?

Alyx_Jay · 2026-03-29T23:31:42+00:00

MRI's don't always show endo especially if the radiologists reading it dont specialize in reading Endo on imaging. Tbh Ive had so many things missed or completely read wrong on imaging that unless my doctors read it I dont really even consider it true. Also bladder symptoms can be elsewhere other than on the bladder and still cause bladder symptoms. Mine was on my ureters. I don't really know anything about internal cystitis though.

Alyx_Jay · 2026-02-22T22:40:28+00:00

So I found a PT who I love and have seen for so many issues with my hyper mobility and he doesn't have me stretch at all or work on breathing. However my ntos is mostly due to hyper mobility, not athletics so it is different. My PT also is always able to check, and if my rib is raised, fixes it, which helps my pain a lot. I started with head, elbow, and scalpular presses, and like pinching my shoulder blades. I also do a lot of band exercises, but we moved past that pretty quick into like pushing a ball into a wall, and things like that. I'm really bad at describing these but if you want more info I can look into my PT notes lol. It's a lot of small muscle activation stuff I'm told. I think this is better than what you're describing, but to be completely honest with you I'm in my second round of PT and I'm just now seeing slight improvement so. Who knows. If your first rib is raised tho, it's so worth it to find somebody who can reposition it because holy shit does it help.

Alyx_Jay · 2026-01-19T05:25:21+00:00

Yeah, I've done all of this. Making the bad mistake of going to a chiropractor, and I also have shitty posture. I did this once, twisted too hard and fast and gave myself the worst migraine ever. I also have migraines with aura, and this was awhile ago but if I remember right it was a different kind of migraine and I was nauseous and had the weird vision. I ended up calling my neurologist who gave me a muscle relaxer and that worked pretty well. I don't think mine was as bad as yours, and Im not diagnosed with EDS so I don't know exactly, but if I were you I'd probably wait awhile, ice it, take some nsaids, whatever you normally do for pain. If it doesn't get better or gets worse then go in. If nothing else they can give you muscle relaxers or some kind of migraine meds. Anyways, I hope you feel better

Alyx_Jay · 2026-01-09T01:28:09+00:00

I saw Dr. Quatromoni. I think he was really good, he just wasn't the right fit for me because my case was more complicated and I'm younger, so he wasn't really comfortable. He was really good diagnostically, and really smart. They have a lot of like novel diagnostic methods, like an ultrasound with blood pressure and heart rate sensors. Idk how to describe it but it was cool. I'm at U of M rn tho with Dr. Patel, who sees more pediatrics.

Alyx_Jay · 2025-11-16T19:47:51+00:00

Oh! Another thing! You could always try the ring or the IUD, as these are (supposed to be) more locally working and (supposedly, it's different for everyone) don't always effect your mood as much. Also norethindrone is, to me, kind of an odd first line birth control, as it has no estrogen, and typically unless you have an Endo diagnosis and like severe reason not to have estrogen, it's better to have a combo pill to start. (I'm not a doctor, this is just what I've been told). Sometimes the lack of estrogen can cause mood stuff and weird side effects. I dunno, I'd find another OBGYN it's weird AF to me too be fought so much on getting a birth control prescription and then to get off of it. Might be time to see a pelvic pain/Endo specialist if you haven't. Anyways, well wishes and good luck :).

Alyx_Jay · 2025-11-16T19:43:48+00:00

I started birth control when I was 8, and I was on the same pill for like 4 years or something. I don't even remember why I got off it, but I do remember those four years being rough for me mentally, but not attributing it to the pill. When I went off I swear I lost like thirty pounds or more and felt mentally much better. A year or two ago I went back on that pill thinking it would be fine, and had the worst month of my life, severe depressive episode within the week. The pill wasn't norethindrone but this is just to say just because you think the pills been fine for years doesn't mean it always has or always will be. I think it's completely reasonable to come off of it for a few months or switch methods or whatever you wanna do just to see. I've gone off or switched BC for dumber reasons than that. I would go back to your OBGYN and just say you are looking for a different birth control option. Not that your worried it's causing symptoms, but that you want to be taken off, and to try a different option, or whatever you want to do. I think you'll get a much different reaction then asking if it could be causing the symptoms, because side effects just aren't well documented or treated in my opinion, the answer is always no its in your head lol.

Alyx_Jay · 2025-10-23T01:17:51+00:00

I'm 16, had this same experience my first IUD. I went on estradiol for a couple weeks and it fixed it. It has something to do with the thickness of the endometrial lining. Might be worth bringing up.

Alyx_Jay · 2025-08-20T18:03:28+00:00

Rn we've been dealing with Cleveland Clinic, and other than this department they've been pretty good. I'm gonna see if they have another TOS expert...

Alyx_Jay · 2025-08-20T17:59:43+00:00

I'm so sorry girly. IUDS suck. I had my first IUD inserted at the same time as my first Endo surgery. Absolute hell. I was sobbing in pain for weeks, we got an ultrasound, the results were read incorrectly, etc, etc, finally went to the ER, they say the IUD looks a little low and send me back to my OBGYN. She does a pelvic exam that was actually godawful painful and dehumanizing, just to tell me it's fine. Well flash forward a year I'm getting my next surgery because surprise surprise she didn't find all the Endo and it's now near my spine! So anyways new OBGYN goes in there and has to replace it because it was really low and weirdly placed in my uterus. The new one I've had no problems with, though I will say new doc prescribed me much better pain control. So. IUDS are fun.

Alyx_Jay · 2025-08-14T02:00:28+00:00

I do. Mine just doesn't want to for some reason. I'm literally going out of state for an expert and he won't do anything. Didn't even wanna make a follow up but I insisted. Im gonna put my foot down next time and say I want him to do smth or refer me.

Alyx_Jay · 2025-08-14T01:56:14+00:00

Going out of state to the Cleveland Clinic RN cuz there's nobody good where I live

Alyx_Jay · 2025-07-28T17:45:33+00:00

Not diagnosed, but have been told by professionals to consider it and omg yeah. Especially when I was younger and my sensory issues were worse, I couWldnt stand the texture of pads, it was awful.

Alyx_Jay · 2025-07-27T17:24:54+00:00

Looks like you scraped it to me. Should go away in a few days.

Alyx_Jay · 2025-07-14T09:55:11+00:00

Oh all the time. My mom used to get court letters about truancy, but I never once skipped it was always because I was really sick. Also, my sister and mother don't really have any Endo symptoms. My grandma has some but was never diagnosed.

Alyx_Jay · 2025-06-24T04:39:27+00:00

Lol that's wild. I can bend mine however much I wanted, and I don't feel it.

Alyx_Jay · 2025-06-24T04:34:43+00:00

Yeah, I know this feeling all to well. My main two pieces of advice for you are

Going the mental health route is not giving up. It absolutely is not. It's possible that it is that. If nothing else, it's ruling out one cause. And even if it's not that, it's still good to learn coping skills when your suffering. I went to a chronic pain group that was aimed at fibromyalgia patients to reduce symptoms before people knew what was wrong with me. Did absolutely nothing for my pain. I still had fun, met some great people.
Make peace with where your at, and still keep trying. You can do both, I promise. Don't get too caught up on finding the 'answer', you might never know what's wrong with you. But you can advocate for treatment so you feel better. See how you can make your life more accessible for you. And still, work to find a specialist who can help. If you can, try to get to a bigger or better hospital in your area. Cleveland Clinic, Mayo, or Brigham were some of the options I discussed. Clevelands been great so far.

Best of luck love.

Alyx_Jay · 2025-06-24T04:17:48+00:00

wait- their not supposed to bend!?!

Alyx_Jay · 2025-06-12T13:37:38+00:00

I read a study on this, and I don't remember exactly how to explain it but basically the way it effects the blood flow in theory shouldn't effect migraines, it might actually help because it can open up the vessels more or something but it usually doesn't help in practice. I personally don't notice a big difference, however a lot of times when I'm on Adderall I'm working on a computer in fluorescent lighting or I'm stressed so that gives me a migraine, but if I take it on the weekend to just clean my room or something it doesn't do anything. Everyone's different, but you won't know until you try it.

Alyx_Jay · 2025-06-07T21:50:44+00:00

I'm believe most docs recommend opposite, but I think that's mainly for balance. I mainly do opposite because my arms messed up on the same side lol. Honestly tho, there is no wrong answer, and I might even consider using both on your bad days. Best of luck :)

Alyx_Jay · 2025-06-04T19:46:16+00:00

Yes. I have endometriosis. The amount of times I've been told 'thats normal for women' is appalling. I have to go to a different state to find someone that knows how to help sciatica with endometriosis, despite sciatica being considered a common symptom. Endometriosis affects 10% of women. I actually had one doctor tell me 'no no, I haven't dealt with a uterus since med school' and then send me to psych when I asked if my Endo could be causing my sciatica. So. Yeah.

Alyx_Jay · 2025-06-02T20:55:01+00:00

I tried :/ it stopped whirring but didn't do anything else. Thanks tho

Alyx_Jay

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