u/Rotting-inglitter

EDIT: oh god the typo ms :( advice you wish you had been given?
What is something you wish you had been told when you were first diagnosed with CMT or how you’ve learned to live with certain things, or even things that you thought were normal but aren’t

Recently I 18F was diagnosed with CMT1A, with the start of neuropathy in lower extremities. I have a genetic counseling appointment in October. (However I’m not really sure what I’m supposed to ask :/ I’m very lost)
Ive always had other leg issues that have kept me from pursuing sports prior to this but I’ve also never not been “active”. I love hiking and just walking around, hell I waitress for a living right now and love getting to move around.
I walked on my toes in childhood and was sent to PT to help correct it (along with some other issues) that didn’t help and found myself finding comfort in high top skate shoes, like converse chucks, or big chunky Osiris shoes. When I initially went in for my evaluation and testing the person evaluating me mentions that my shoes could me similar to a “bad” make shift AFO, and the more I think about it the more it sorta? Makes sense.
I’m having a really hard time understanding what pain that I might be in might not be average, along with struggling with the idea of whether I still want to have a child later in life, or how it might progress in myself / will I be disabled at some point if I’m not already?
Not only that, but I’ve seen many people be giving gabapentin as a prescription along with my mother but I’m very concerned with that due to many new studies coming out :((
Does anyone have any advice they wish they had been given?
Again sorry for long post, I’m not really sure where to start. Thx :/

I 18F Got my (kyleena) iud put in around last week, (9 days ago). This is my second iud, I got my first when I was 15 then it displaced itself about 2 months ago. I got it removed, waited a month, then got it put back in. Insertion was worse than I remember, I had a paining episode on the bed but all was well a few mins after. It was inserted on my period and my period continued and stopped like normal. I’ve had no spotting since then. I’ve had to take 2 voice acid suppository’s due to a ph issue but that stoped like 2 days ago.
Went to the bathroom this morning and noticed some pale pink spotting, my period isn’t due for ~17 days.
I’ve had some pretty intense cramping since insertion but to be fair my cramps are like hell when not on some form of birth control and cramping post insertion is normal.
Can anyone give any insight on whether or not I should make another appt before my 1 year checkup?

My iud was removed about a month ago, after 3 years of a wonderful experience due it it shifting into my cervix, my next appointment is supposed to be the 28th of this month and I’m remembering how painful having my iud put in actually was. When I fist had it put in I was given a pill to soften my cervix, this time nothing has been prescribed and I’m really worried about how painful this will be. Is it a possibility for me to call and express my concerns with someone? I don’t want to be labeled as drug seeking especially over the phone but I’m not sure how feasible it is for me to take any medication whilst at the appointment

Got my hormonal id removed abt a month ago, due to it having shifted lower into my uterus. For the past moth I’ve had a dull ache, sometimes not so dull pain. Has anyone else had this? Other that that I feel pretty normal / the same as I did ok with my iud. My period was a bit longer and about a day late.

2 weeks post op today, my sockets are still pretty open, but they are gradually closing. Only mild aches and pains; nothing that requires any kind of pain management. I flush my sockets usually after every meal. Recently I’ve noticed that my bottom left is less open that my right (right was impacted) and my left side has like extra gum tissue around my last molar. It’s like a weird flap. Will that go away? Has anyone else had new gum tissue form after wisdom tooth removal?
Also, when did your mild aches go away?

I got my iud removed about 2 weeks ago ish and I have an appointment to get a new iud later next month. I currently am late on my period (only abt a day and all negative pregnancy tests) I had my kyleena iud for a little more than 3 years with no issues apart from some dryness issues. Until last month my iud shifted to be primarily In my cervix and to rotate slightly. My doctors and I cannot really tell if this is expulsion, it lowered itself right after my period or during, I use tampons and not a diva cup.

Could it be expulsion? Is it worth getting the same iud again or should I change it for another iud? Anyone else have a similar thing happen to them? What was your resolution?

I got all 4 wisdom teeth out on Wednesday 24th, now being the 28th I’ve had a pretty good healing experience so far, only one of my teeth were impacted. The past 2 days I’ve had mild to slightly more than mild pain on my lower right and sometimes upper right (BR was impacted) when talking or eating / moving my mouth. I’m pretty sure this is because of the one stitch in my cheek, I don’t think I have dry socket as I’m not in any massive amount of pain, nor does it get worse. It just feels like I’ve got the worst cavity!

I’m sure this is normal but I’d love to hear others experiences so I had a bit of a frame of reference for how long I have to endure this lol
Sorry for typos

I got all 4 wisdom teeth removed today, only one was impacted and the appointment went AMAZING. I was awake for this and not laughing gas and has very little discomfort / pain. I’m now about 3 hours after, taken my medicine and I’m in agony. I’ve never been on so much pain in my life.
You’re telling me this gets worse? How can I mitigate this??? I’m so scared

Yesterday I (18f) got my IUD removed after about a week of thinking it was misplaced. I had my kyleena for a little more than 3 years, with no issues at all until shortly after my last period. During the 3 days after my period I thought that it was normal post menstrual cramps but by day 4 I wasn’t so sure as I could only feel one string as compared to every other time before I’ve had 2, it is at this point I also had the urge and need to use the bathroom all the time even though my bladder was empty. Took an at home UTI test and it came back positive for lukocites, went to urgent care and they ran all the tests. Negative for everything except white blood cells in a wet mound test. Made an appointment for my gyno asap and waited. I spotted for a little bit during this time. I went to my appointment and luckily I was able to an ultrasound same day, my IUD was sitting mostly in my cervix and was slightly rotated. I had it removed the same day in hopes of my pain going away, and I have an appointment next month to get a new iud.
My question now is, when did the mild discomfort after removal go away for you? What side affects did you notice if any? I’ve seen lots of bad experiences with this iud and I don’t feel the same right now.
Also, could this be expulsion? Or is it more likely that it got snagged or pushed somehow? I have been racking my brains thinking about how it could have happened as my doctors have no idea either!!

Sorry for any typos…

Yesterday I (18f) got my IUD removed after about a week of thinking it was misplaced. I had my kyleena for a little more than 3 years, with no issues at all until shortly after my last period. During the 3 days after my period I thought that it was normal post menstrual cramps but by day 4 I wasn’t so sure as I could only feel one string as compared to every other time before I’ve had 2, it is at this point I also had the urge and need to use the bathroom all the time even though my bladder was empty. Took an at home UTI test and it came back positive for lukocites, went to urgent care and they ran all the tests. Negative for everything except white blood cells in a wet mound test. Made an appointment for my gyno asap and waited. I spotted for a little bit during this time. I went to my appointment and luckily I was able to an ultrasound same day, my IUD was sitting mostly in my cervix and was slightly rotated. I had it removed the same day in hopes of my pain going away, and I have an appointment next month to get a new iud.
My question now is, when did the mild discomfort after removal go away for you? What side affects did you notice if any? I’ve seen lots of bad experiences with this iud and I don’t feel the same right now.
Also, could this be expulsion? Or is it more likely that it got snagged or pushed somehow? I have been racking my brains thinking about how it could have happened as my doctors have no idea either!!

Sorry for any typos…

For context, I f18 have had a 5 year hormonal iud for 3 years 3 months with no issues, ive had the same partner for this whole time with no infidelity issues, iud insertion was bad, and the 2 days that followed were also bad but after that things were perfect! My periods are very regular and instead of a week long they are about 3-4 days long, I’ve always been able to feel my stings and check regularly.

I finished my period about a week ago, and I had what I figured to be some mild cramping after the fact as things happen. I went about my life as normal, had sex (didn’t hurt and wasn’t uncomfortable really), but the “cramping” didn’t go away.
it felt like a low, dull, nonstop cramp at this point. on day 4, i was at work when I started to feel like I needed to use the bathroom all the time even when I had just went, this is when I thought that it could be the start of a UTI, online was telling me bladder pain could feel like what I was feeling so after work I picked up a home UTI test, it came back positive for luko things (white blood cells) so I went to urgent care.
After tests it was found that I DID NOT have a UTI, yeast infection, BC, trich, or the STD they test for. The only thing they found was abnormal about of WBC during a wet mound test.
That was the 11th, and I got my results the 12th. The 12th I had some fresh light spotting so I was going to wait for the clinic to call with my results and not just MyChart but they didn’t so I called and made the earliest gyno appt I found.
This entire time I have been taking OTC pain meds like candy :(.
Now I’m seeing old blood but there is more blood then there was initially and I’m in more pain. I can only feel 1 of my iud stings when I’ve always been able to feel both, the last time I had sex on Thursday night my significant other said he felt the base (not strings) of my iud poke him, but also that it’s happed before?

If I am in more pain on Sunday before my appointment on Tuesday should I just go to the ER? I feel like a wuss or that it might all be in my head but I’ve had to call off work the past 2 days and I’m tired of feeling like this.

For context, I f18 have had a 5 year hormonal iud for 3 years 3 months with no issues, ive had the same partner for this whole time with no infidelity issues, iud insertion was bad, and the 2 days that followed were also bad but after that things were perfect! My periods are very regular and instead of a week long they are about 3-4 days long, I’ve always been able to feel my stings and check regularly.

I finished my period about a week ago, and I had what I figured to be some mild cramping after the fact as things happen. I went about my life as normal, had sex (didn’t hurt and wasn’t uncomfortable really), but the “cramping” didn’t go away.
it felt like a low, dull, nonstop cramp at this point. on day 4, i was at work when I started to feel like I needed to use the bathroom all the time even when I had just went, this is when I thought that it could be the start of a UTI, online was telling me bladder pain could feel like what I was feeling so after work I picked up a home UTI test, it came back positive for luko things (white blood cells) so I went to urgent care.
After tests it was found that I DID NOT have a UTI, yeast infection, BC, trich, or the STD they test for.
That was the 11th, and I got my results the 12th. The 12th I had some fresh light spotting so I was going to wait for the clinic to call with my results and not just MyChart but they didn’t so I called and made the earliest gyno appt I found.
This entire time I have been taking OTC pain meds like candy :(.
Now I’m seeing old blood but there is more blood then there was initially and I’m in more pain. I can only feel 1 of my iud stings when I’ve always been able to feel both, the last time I had sex on Thursday night my significant other said he felt the base (not strings) of my iud poke him, but also that it’s happed before?

If I am in more pain on Sunday before my appointment on Tuesday should I just go to the ER? I feel like a wuss or that it might all be in my head but I’ve had to call off work the past 2 days and I’m tired of feeling like this.

I 18f have had my 5 year iud for about 3 years now, as of about a week ago now, my period ended as normal but I was left with a dull pain in my uterus / bladder. I initially thought it was my iud, because I found only feel one sting when me having 2 was normal. I waited for the pain to go away as it’s not unbearable, and I almost forget it’s there sometimes. After waiting, on day 5 I started to feel like I always needed to use the bathroom, or that my bladder wasn’t empty ever. This them made me think it was a UTI, so I took a home test and it came up barely positive for white blood cells, then went to urgent care, no UTI via traditional testing. I’m now waiting on a call back about more tests they are running. As of this morning I am spotting, and I can pee normally ish. Could this be a sign of my iud having shifted somehow? I’m scared I’m going to wind up pregnant or having to reconsider my favorite / easiest birth control :(
My partner (same person for the past 4-5 years has said that there isn’t much change from him internal perspective, other than my iud (not the strings!!) poked in pretty hard when I was in a weird position. There is no pain during sex related to this, and I did have sex yesterday but there was no spotting then, that night, or early early this morning. Only now

I 18f finished my period about 6 days ago and since then I’ve had a minor pain, that feels like period cramps but it lasts and there is no ”waves” I can only feel 1 iud sting and I think it feels slightly longer, but there is no pain poking around my cervix. It also feels like I have a full bladder, not that I need to pee but that I’m either bloated or need to pee (I can’t pee) I’m taking at at home uti test after work but can’t get a gun I appt very soon. Does this sound like a uti? Should I be more worried?

EDIT, took at home UTI test strip, positive for nitrates :/ going to urgent care as soon as boyfriend gets home

My (F18) period ended 5 days ago, soon to be 6, and for the past 2 days I’ve had very mild; but noticeable cramps. I’ve had an 5 year iud for about 3 years 3 months with no negative symptoms or issues. My period is VERY regular and I get horrible cramps with my period but I always have, I have never felt like this and am worried my iud might have shifted (can feel a string in place but only one, and now my stings feel quite a bit longer) or something else more worrying. Is this something to worry about now or should I wait until it is worse / get better on its own? I’m underweight at the moment but trying to gain weight, I’m on my feet and moving a lot for work as well, not sure if that would contribute to anything but it’s worth a shot!
Any help or advice is greatly appreciated, please be kind, I’m pretty medically fragile as it so my medical anxiety is through the roof lol.

UPDATE, I’m not good at knowing my body, I took an at home UTI test and it came back positive:/ going to urgent care later today :(((

My (F18) period ended 3 days ago, soon to be 4, and for the past 2 days I’ve had very mild; but noticeable cramps. I’ve had an 5 year iud for about 3 years 3 months with no negative symptoms or issues. My period is VERY regular and I get horrible cramps with my period but I always have, I have never felt like this and am worried my iud might have shifted (can feel a string in place) or something else more worrying. Is this something to worry about now or should I wait until it is worse / get better on its own? I’m underweight at the moment but trying to gain weight, I’m on my feet and moving a lot for work as well, not sure if that would contribute to anything but it’s worth a shot!
Any help or advice is greatly appreciated, please be kind, I’m pretty medically fragile as it so my medical anxiety is through the roof lol.