u/Useful-Voice-9574

I’ve just been prescribed Baclofen as a suppository for “pelvic spasms” which I don’t even agree with… I think it’s only my bladder, but I’m willing to give it a shot. Issue though, I was prescribed to crush an oral tablet and shove it up there?? The pharmacist was insanely confused, but someone was being rushed into an ambulance when we were there so we weren’t top priority. My Dr kept saying that she’s aware it’s an oral tablet? I don’t think that would dissolve properly at all?

Am I wrong about this or does anyone have experience with this medication? Anything helps! I’m getting mildly suspicious about my urogyno atm (not only this scenario, but it’s increased my suspicion.)

I had a hysterectomy on 5/27 and was told it would help my pelvic pain. I wouldn’t be typing this if it did help. Turns out I have pelvic floor dysfunction. I have EDS, Bertolottis syndrome (my left lowest lumbar is congenitally fused to my sacrum) etc which Idk WHY THEY DIDNT THINK OF THIS BEFORE THE SURGERY.

But after surgery i’ve developed a neurogenic bladder, and I cannot move my booty hole 😐
I literally have been having to wait for my body to push the poo out with my organs for me (gross ik) It makes me feel so lightheaded and ill every time.

My new pelvic PT noticed that I have no anal wink and I cannot bear down. That and my muscles when sneezing shoot down… not up like they’re supposed too. She thinks I also need ortho and neuro PT as I have one sided weakness, balance issues, and instability.

I guess my question is, anyone with a similar experience? Is this more gastrointestinal related now or something else?
I’m really discouraged as my gyno keeps saying it’s not her problem anymore. She also says any pain from surgery is disordered at this point??

I had a hysterectomy almost two months ago for suspected endometriosis and pelvic pain(I feel that my doctor rushed me into this decision, and I blindly accepted it)

The surgeon found endometriosis on my Uterosacral ligament and removed it during the surgery. However, it wasn’t an exploratory surgery so they didn’t/couldn’t look for more. My gyno (the surgeon) agreed that there is the possibility for more endo in my body, but since I’m on low-dose Testosterone it shouldn’t be too much of a problem since it would prevent my ovaries from producing estrogen. However I have said to them many times that I don’t want to be on testosterone forever if possible. The testosterone never stopped my cycle and even after the surgery I still feel awful symptoms of my cycles.

This week I met with my main provider, and I brought up wanting to get off testosterone again. I also don’t want to be on hormonal birth control because I’ve tried it many times before and never been able to tolerate it. I brought up a related worry about anymore endometriosis potentially in my body and how getting off testosterone might cause pain from it to come back or the inflammation to return especially since the symptoms are not better. My main provider immediately jumped to how I no longer have endometriosis and that I’m essentially cured of it because they removed all they found. She further reassured me that the surgeon looked everywhere and that they took everything out. (Once again, the surgeon said she couldn’t look anywhere outside of the hysterectomy surgery site.)

I’m kind of at a loss for what to do because I’m not sure if they’re correct because I’ve been under the impression there is no real cure and that endo can come back if the tissue is still there or that the underlying inflammation can come back/is still there.

This isn’t the first time I feel I’ve gotten conflicting answers or just dismissed by both doctors. (PS. by conflicting I mean getting hospitalized for a potential dehiscence only to be told there wasn’t one, back to them saying there is one.)

Gyno won’t admit my new neurogenic bladder where I’ll need to catheterize myself daily for the rest of my life is from the surgery either 🙃

Not sure what flair fits here but, I’m confused on what to do now, or if there is even anything I can do?

This could be niche?
I’ve just been told I’m a good candidate for the sacral nerve modulation implant by my urogyno!! However during the phase 1 trial period you cannot, bent, twist, lift, lay on your back too much etc. How in the heck am I supposed to transfer in and out of the chair without doing any of that? I can ambulate somewhat but, my team and I decided falling would hurt me worse. What i’m asking is, has anyone had this surgery and was fine? After healing phase 2 if all goes well I’ll be fine, but the worry is the leads moving.

Context I was diagnosed with ME/CFS back last fall but, it was officially added to mychart in january. I was given handouts and everything. i have papers proving this. I went to specialists who agreed and added it as well.

Fast forward to late spring and I get a new PCP. It’s suddenly missing from my chart along with a few other things. I know mistakes happen so I wait until my next appointment to bring it up. She goes on this rant about how “PCPs shouldn’t be allowed to diagnose things like syndromes and disorders” and that she’s being “very careful” in her wording in her clinical notes. I and my bf reiterated we aren’t asking her to DIAGNOSE me, more so where did MECFS and half my chart go? She dropped it.

Next visit i’m one of my slumped over partial paralysis, lights feel like a thousand blazing suns, sounds are too loud, etc crashes. We try to bring up MECFS again asking where it poofed too? She practically ignored the question and blamed it all on my wheelchair and anxiety (she then added generalized anxiety to my chart 🫩) My partner helped advocate in this appointment as I was NOT all there. A few specialists have it in scattered notes but, it’s not even in my health history. Other providers i’ve asked can’t find it.

OH AND SHE KEEPS RECOMMENDING GRADED EXERCISE.

Another hospital system I’m a part of believes me enough but instead of MECFS, they changed it to just CFS, and then when getting my data from this PCP… now it says fatigue or chronic fatigue… but not in my diagnosis chart. Some newer providers flat don’t believe me that I was ever diagnosed…

I don’t have the energy to keep fighting them. I want the documentation because I cannot work, I cannot study, and i need doctors to understand that (ik some are ignorant) it’s something that affects my care.

Sorry for the long rant but i’m getting fed up, and Im not sure if I can do anything about this? or if it’s even worth the exertion… I’m struggling to keep up with appointments (canceling so many) but, some other health issues CANNOT get ignored atm. I’m to where some crashes I cannot eat, cannot move, cannot speak, i start having what we are wondering are PNES if i get to this stage. My orthostatic intolerance is so much worse as well. I’m worried for the day my baseline permanently worsens again. I already can’t care for myself anymore :(

I’m 8 1/2 weeks post hysterectomy and ended up hospitalized twice after. Once for uncontrolled pain and I needed a foley for a week due to retention. Secondly for “possible” cellulitis. The pain I had before the hysterectomy that the surgery was supposed to fix… it still there (there was very little clinical evidence that surgery was the only option but i blindly trusted my team). I now have new TIGHT PAINFUL pulling from the left inside cuff to my butt cheek and some of my left thigh. My incisions feel like i’m scratching a bad sunburn and I can’t wear my regular pants…

I had a 6 week FU that my provider TOLD ME TO KEEP when I was inpatient, but called me the morning of to cancel as “We don’t wanna traumatize the cuff more”. I cannot drive and It was hard to reschedule a new FU (long story I can explain if needed). It’s scheduled but my surgeon has refused to fill my non opioid pain medication because “You should no longer have peri operative pain”. I even asked my pcp and my pcp doesn’t wanna prescribe it as it’s my “gynos prescription”. The pain is so bad I haven’t been sleeping well since going off the meds cold turkey, a little over a week ago.

Surgeon this entire time refuses to admit my now urinary incontinence, bowel incontinence, urinary retention, severe constipation, and pelvic pain are gyno or surgery related. I only had pelvic pain. They also think because I left my ovaries, that my hormones are fine. I’m very emotional and i’m normally not. PCP is acting like i’m forever cured from endo (found during surgery didn’t know about it before) because of my hysterectomy… I swore there was no cure? I also am so tired that i’m having to stop eating meals to rest?? Atleast my pelvic PT admits it’s a major surgery OFC i’m still in pain but she can’t really do much as my surgeon hasn’t cleared me for internal work.

I’m feeling very discouraged right now. Constant pain and fatigue sucks but, I feel like they’re being so weird about it? I just don’t wanna be in pain all freaking day and not need to use catheters daily? Any tips on the nerve pain near and around my incisions would be FANTASTIC 😭

I’m getting (trying to convince insurance) a more contoured backrest than my current one, which is a Jay j3 posterior. My old back was a ROHO plastic shell. It’s my choice this time unless insurance fights us on it, if I want a Roho again or jay j3 posterior deep. My J3 is WAY heavier than the roho and weight is a huge concern for me, BUT i really need the extra contour. I’m going through numotion and i’m not sure my options if there are any others?
Insurance won’t cover carbon fiber.

Any experiences anyone has with both or comparing both would be lovely.

I don’t think I have an opinion to try much out at my location as it was even a struggle to try out a power assist.

I also think support matters more than weight but my chair is MUCH heavier than my last so i’m having to make a tough choice here. I’m willing to self fund something else need be later on though…

I had a hysterectomy almost two months ago for suspected endometriosis and pelvic pain, since I have no desire to have kids. (I feel that my doctor rushed me into this decision, and I blindly accepted it)

The surgeon found endometriosis on my Uterosacral ligament and removed it during the surgery. However, it wasn’t an exploratory surgery so they didn’t/couldn’t look for more. My gyno (the surgeon) agreed that there is the possibility for more endo in my body, but since I’m on low-dose Testosterone it shouldn’t be too much of a problem since it would prevent my ovaries from producing estrogen. However I have said to them many times that I don’t want to be on testosterone forever if possible. The testosterone never stopped my cycle and even after the surgery I still feel awful symptoms of my cycles.

This week I met with my main provider, and I brought up wanting to get off testosterone again. I also don’t want to be on hormonal birth control because I’ve tried it many times before and never been able to tolerate it. I brought up a related worry about anymore endometriosis potentially in my body and how getting off testosterone might cause pain from it to come back or the inflammation to return especially since the symptoms are not better. My main provider immediately jumped to how I no longer have endometriosis and that I’m essentially cured of it because they removed all they found. She further reassured me that the surgeon looked everywhere and that they took everything out. (Once again, the surgeon said she couldn’t look anywhere outside of the hysterectomy surgery site.)

I’m kind of at a loss for what to do because I’m not sure if they’re correct because I’ve been under the impression there is no real cure and that endo can come back if the tissue is still there or that the underlying inflammation can come back/is still there.

This isn’t the first time I feel I’ve gotten conflicting answers or just dismissed by both doctors. (PS. by conflicting I mean getting hospitalized for a potential dehiscence only to be told there wasn’t one, back to them saying there is one.)

I think i’m looking for success stories or maybe a point in a direction? Not diagnosis obviously just i’m a bit lost rn.

I started struggling with “chronic idiopathic constipation” around 2024 and recently it’s been getting much much worse. I’ve taken miralax, linzess, senna/miralax, senna (current) and tried diet changes. I’m in pelvic PT etc. My GI doctor keeps suggesting all my GI pain is because of constipation even though it’s there when I’m not so 🤷‍♀️.
But the only med that’s worked and not made me explosive has been plain senna 8.6mg. Even then food is moving too fast through me and i’m not digesting everything now. Stool is weirdly yellow, bloody, FULL of mucus (normal for me), makes me almost pass out and burns so so so bad. I don’t take it, severe passing out pain comes back. As my GI doctor put it “you have EDS and your skinny (im average sized) so your intestines stretch too much, but since you’re skinny, things hurt you more as there’s less room to stretch”
my pcp won’t refer me to another GI but i genuinely think something else is going on and maybe I don’t know how to explain my symptoms or this is just how it is?
what would you do in my situation?

This could be totally normal and I just wanna make sure but my gyno/surgeon gave me a non answer “answer” and i’m pretty frustrated.

I’m 3 weeks PO and a couple days. If I have to pee at all and try to hold it so I can make it to the bathroom, it HURTS SO BADLY. It’s the same with gas or bowel movements no matter the amount or texture. It’s got me wearing always discreets incase I lose my bladder in public. I asked my surgeon and she just said “well that just shows you how bad our pelvic nerves are from distinguishing what’s hurting” and that was that. She just said “i’ll see you at our 3/4 week appointment” which is next week. Is this normal? If so how are y’all dealing? It’s so painful I get pretty dizzy 😵‍💫

Looking for advice:
Little context: I had surgery 2 weeks ago and was cleared to take LDN about a week ago. Since starting back up (i was on 4.5mg and i’m now on 1.5mg) I’ve been having SEVERE jaw pain and tightness that’s causing migraines. It’s not related to the surgery at all and this happened last time I tried to take 6mg and had to go back to 4.5mg. Ive waited a week and it’s not improving. I was under the impression starting back up would be easy as I didn’t have any (but that one) side effect last time. I’ve messaged my prescriber and i’m asking to see if I can get a bottle of less than 1.5mg to titrate slowly but i’m scared I won’t be able to take LDN anymore.
Any similar experiences? or suggestions?

Not sure if this is entirely allowed here so please let me know and I’ll remove it!

my newer pcp…
when i was telling her than because she removed the MECFS, POTS and EDS (that other doctors and specialists agree i have mind you) my insurance denied by new chair….
she asked if i was in therapy and that anxiety probably plays a roll with me needing a wheelchair

then asked if I was ever diagnosed (im autistic and spent out of pocket $500 to get an assessment that says it was never anxiety) 🤨

Any tips here? I shot it down when I was in the room with her but she requested to talk to my therapist.. I actively NEED this chair extremely soon as mine doesn’t fit and is almost unusable… She doesn’t take well to be bringing in research or anything so i’m at a loss.

I’m 23 and had my hysterectomy just about a week ago. I have EXTREMELY mild allergies. So much so I normally don’t notice them. Until about 3 days ago… I’m sneezing every time i step outside or i’m in a car. My nose sniffles when I’m around my cats. I LOVE my cats but they also make me sneeze and at the moment sneezing hurts so dang bad. Right now I’m assuming it’s hormone changes.
Yesterday I couldn’t stop crying over everything. I cried because the grass was so green after a week of rain. I cried because I couldn’t hug my partner like I wanted.
Suddenly also my tongue is very sensitive to spice? I LOVE spicy foods. I still love them but now bbq is burning my lips and tongue? It’s not necessarily spicy feeling but almost raw?
I’m not on HRT and my surgeon doesn’t seem to think it’s necessary but I feel insane at the moment. I don’t have issues regulating emotions normally and I’m having a hard time. I feel very lost…. I wasn’t given much guidance at all? I didn’t know I couldn’t bend over or squat. I just know not to push to use the restroom from google.

Any tips for any of this?