Post-hysterectomy bladder spasms

[Ceylon_Star]

I know a number of ladies on here have had hysterectomies, so I thought I’d bring it up here and not just on the trans thread in OT.

I had my hysterectomy (radical abdominal, so EVERYTHING was removed. Uterus, tubes, ovaries, cervix) on March 15th. Was supposed to be laparoscopic assisted vaginal, but he opened me up completely and won’t tell me why. Will be finding that out next week when I see my GP once he has the surgical notes and will also be bringing this up with him at that time.

Since surgery I have had horrific bladder spasms right before my bladder is completely empty. I have to sit for a minute to let them subside enough to stand, and then I have to immediately sit again to finish getting the last dribbles out. This is the only time it spasms since the catheter came out on day 2 after surgery (prior to its removal, the catheter would make it spasm any time I shifted my weight, or moved, or the nurses emptied the recepticle, or any time I breathed too deep, etc etc)

I was tested every day in the hospital (thursday through sunday), again Tuesday, and again Friday, via culture and dip test, for UTI and nothing has come up, so I don’t think the spasms are an infection thing. It doesn’t burn to pee or anything either, it just starts spasming when my bladder is almost empty.

Because it’s early in my healing, and I’ve got the sudden menopause sweats, I am drinking a ton of water and therefore peeing a LOT, so it’s becoming a bigger and bigger issue because it doesn’t look like the almost-done-peeing spasms are stopping any time soon.

Is this normal for post-hysto? Especially post-abdominal hysto? I had 25 staples in my over 12" long incision.

Thanks for any insight you might have. I’m really frustrated!

[KBC]

No insights, just condolences, that must suck. Hope it settles down soon.

[fordtraktor]

No advice, but sending hugs. My mom was a mess after her hysterectomy but it quieted down after 6 weeks or so.

[Ceylon_Star]

Thanks to both of you.

All things considering, I am healing up REALLY well for how major the surgery was, but because I’m drinking a ton of extra water because I’m constantly a sweaty mess because yay sudden menopause, I’m peeing so often that the bladder spasms are kind of overriding the rest of the improvements. So I guess I’ll try to focus on those and hope things settle down sooner rather than later!

[Bluey]

Don’t know how they do things in Canada, but here they gave me a discharge care package and there it explained about all that, including bladder spasm and shooting pain and leackage.

There are medications for any such problems if they persist, but most should clear by 6-8 weeks.
Some of those odd/painful sensations could be where the Dr may have cut thru some nerves and they may act up as they regenerate and start working again.

I didn’t have any, none, no problems at all of any kind, lucky me.

What the sheet keep saying, “let the nurse/doctor know”.

You may want to call them with any questions, just in case something needs to be addressed right now on their end.

[Ceylon_Star]

Unfortunately my gyno is a crappy people person and is just telling me to suck it up. This is the same man who refuses to tell me why he opened me up completely when we agreed on LAVH. I do see my GP on Thursday and will bring it up then, but it would be nice to have some relief or even just some thoughts to take with me to the appt before then. The gyno also did not give me any written info to take home, just said if there was suddenly extreme bleeding, large clots, or my incision randomly splits, to go to the ER, otherwise he’ll see me in 6 weeks.

The nurses at the hospital said it should imporve within 10 days, and has gotten worse instead of better. Thankfully no leakage or incontinence, just brutal spasms every time I pee. You know how a blood pressure cuff kind of jerks as it loosens up? It gets really tight really quick and then with each little jerk it lets off a bit over the course of about a minute? that’s how the spasms feel. It’s one BIG spasm, and then it jerkingly lets go and I can finish my business.

[Ceylon_Star]

GP is worried that my bladder got knicked during surgery because the medication he gave me to try to reduce the spasms didn’t help at all. He’s sending me for an ultrasound that involves a catheter filling the bladder with sterile saline to check for damage. He’s going to have them do it under general anesthetic because of my history of trauma with catheters, so it is going to take a little longer to get an appointment to get it done. At least he’s respecting my trauma history!

[KBC]

Good luck, waiting sucks, but hope they find an answer and a solution soon.

[JanM]

I love your GP, that’s exactly what a good doctor should be.

No other input from me, but sending hugs and jingles, and hope you’re better soon.

[Bluey]

@Ceylon Star

GP is worried that my bladder got knicked during surgery because the medication he gave me to try to reduce the spasms didn’t help at all. He’s sending me for an ultrasound that involves a catheter filling the bladder with sterile saline to check for damage. He’s going to have them do it under general anesthetic because of my history of trauma with catheters, so it is going to take a little longer to get an appointment to get it done. At least he’s respecting my trauma history!

I had that procedure and there was really nothing to it?
I sat in a chair with a hole in it and a bucket in that hole, the kind used for bedside toilet chairs.
It is not painful, it is over in five minutes, a nurse took care of it all.
She had the bladder filled right away.
My goodness, mine is very large, why I can hold it so well.
Took several measures, ultrasound pictures, etc.
Then asked me to let go after she checked all she needed to check.

I am glad that, since you have problems with such, they are going to sedate you.
That is very considerate of them.
They probably will wait to ask you to let go after you come back to.
Don’t be surprised if it is a veritable river.

[Ceylon_Star]

@Bluey

I had that procedure and there was really nothing to it?
I sat in a chair with a hole in it and a bucket in that hole, the kind used for bedside toilet chairs.
It is not painful, it is over in five minutes, a nurse took care of it all.
She had the bladder filled right away.
My goodness, mine is very large, why I can hold it so well.
Took several measures, ultrasound pictures, etc.
Then asked me to let go after she checked all she needed to check.

I am glad that, since you have problems with such, they are going to sedate you.
That is very considerate of them.
They probably will wait to ask you to let go after you come back to.
Don’t be surprised if it is a veritable river.

I have SEVERE trauma related to catheters, due to being forcibly catheterized MANY times as a child (an adult in my life used it as punishment if I didn’t use the potty the second I was dropped on it). I had to spend the first 24hrs after my surgery when I had a catheter in completely sedated because any time I would move or the nurses would empty the bag at the end, I would have a full blown panic attack. Even then, I still didn’t sleep for the first 30 hours while it was in, because the sedation alone wasn’t enough to calm me with it in…

I get that the procedure itself is “simple” but it is HIGHLY traumatic for me.

There aren’t many, if any, other medical procedures I cannot handle, but anything involving catheters is a hard no.

My GP respects that, and understands trauma, so rather than getting it done on Tuesday after the long weekend, he’d rather wait a few extra days so that it can be done without traumatizing me further. And I am immensely grateful for his understanding. The procedure isn’t an emergency, so we can afford to wait a bit longer to do it in a way that works for me. I have enough mental health issues, I don’t need them made worse by another catheter!

[Ceylon_Star]

@JanM

I love your GP, that’s exactly what a good doctor should be.

No other input from me, but sending hugs and jingles, and hope you’re better soon.

He is an incredibly lovely man, only takes transgender patients, is easy to get a hold of when needed (I can usually get in to see him within 24hrs, the longest i’ve had to wait for an appointment was 72 but he was out of town so that’s why it was longer to wait). My last GP was horribly closed mined, refused to treat me most of the time, using the excuse of “if you stopped being a tranny you wouldn’t have these issues”. I reported her countless times and she never even got a slap on the wrists. So when I found my current GP I was shell-shocked by just how wonderful he is. I am very lucky to have him as my doctor. He says he will call me as soon as it is safe for me to start my testosterone again, even if it’s on a weekend, so I don’t have to suffer longer than needed without hormones. Class A man.

[fordtraktor]

Gosh, that is awful! I am so sorry that happened to you.

[Bluey]

@Ceylon Star

He is an incredibly lovely man, only takes transgender patients, is easy to get a hold of when needed (I can usually get in to see him within 24hrs, the longest i’ve had to wait for an appointment was 72 but he was out of town so that’s why it was longer to wait). My last GP was horribly closed mined, refused to treat me most of the time, using the excuse of “if you stopped being a tranny you wouldn’t have these issues”. I reported her countless times and she never even got a slap on the wrists. So when I found my current GP I was shell-shocked by just how wonderful he is. I am very lucky to have him as my doctor. He says he will call me as soon as it is safe for me to start my testosterone again, even if it’s on a weekend, so I don’t have to suffer longer than needed without hormones. Class A man.

Sounds like he needs an extra nice thank you card with a gift, such a wonderful person.

You are lucky to have found him.
For most doctors we are but one more of very many patients.
No matter how hard they try to see us as individuals, the system is against it.

Good that he is on top of the hormones, those really make our lives run as they should.

[Donkaloosa]

So glad your GP is a decent person who obviously cares about his patients! Good luck with this next procedure and just remember that all of us are with you virtually holding your hand.

[snowrider]

Hey - if your doc won’t give you the operative notes the facility should be able to or contact his practice and ask for them. I would be concerned that he won’t tell you why he opened you up or give you the notes. Doctors really need more accountability.

I assume you have eliminated all the foods that cause bladders spasms? coffee, tea, soda, citrus, spicy foods etc. I can no longer tolerate any lime at all, which is pretty tragic considering I’m in SoCal most of the time! Also you can take anti-spasmodics, I think there is one that’s over the counter and several prescription options.

[Ceylon_Star]

So it looks like what has happened is my bladder decided to take up the space that my uterus and whatnot left when they were removed, rather than the preferred intestines. So I have some pelvic physio to do and if by the time I see the gynecologist the first week of May for my final post-op the spasms haven’t subsided, I will likely be getting botox in the muscles around my bladder (which amuses me a bit because a friend of mine who has MS has the same thing done regularly, though the hope is that it would just take a one-off for me and my issues)

I also finally got the full surgical report from my GP. I was opened up because the surgeon was unable to get his tools into my vagina with enough room to maneuver to pull everything out from underneath. He tested this out prior to making any incisions, which explains the no trace of any laparoscopic incisions. The bright side to the full incision is that he was able to simply pull the muscles apart instead of cutting through them, which explains why, for the most part, I have been healing so quickly. So I am happy with the explanation, but frustrated that the surgeon wouldn’t just say so and left me to wait until the full report was delivered to my GP.

[CindyCRNA]

@Ceylon Star

I also finally got the full surgical report from my GP. I was opened up because the surgeon was unable to get his tools into my vagina with enough room to maneuver to pull everything out from underneath. He tested this out prior to making any incisions, which explains the no trace of any laparoscopic incisions. The bright side to the full incision is that he was able to simply pull the muscles apart instead of cutting through them, which explains why, for the most part, I have been healing so quickly. So I am happy with the explanation, but frustrated that the surgeon wouldn’t just say so and left me to wait until the full report was delivered to my GP.

Hum, that sounds odd. I’ve been in a lot of hysters and the docs do everything to not have to do an abdominal hyster. Did you have a lot of fibroids and your uterus was too large? But he didn’t even look, just went to an abdominal hyster. Maybe someone else can chime in but I’ve never heard that unless you have vaginal scarring/stenosis. Not trying to pry.

[Ceylon_Star]

@CindyCRNA

Hum, that sounds odd. I’ve been in a lot of hysters and the docs do everything to not have to do an abdominal hyster. Did you have a lot of fibroids and your uterus was too large? But he didn’t even look, just went to an abdominal hyster. Maybe someone else can chime in but I’ve never heard that unless you have vaginal scarring/stenosis. Not trying to pry.

It stated that the vaginal canal was too narrow to work in, so an abdominal procedure was necessary. From what my BO’s mom (who is on the board of directors for, and head of nursing for, the local health authority) says, he is very old school, so that may have been part of it? Or the fact that I am his first ever transgender patient, and he is nearing retirement age? It said there were cysts in the ovaries but nothing stating the severity of said cysts (I have known for nearly a decade that i had polycystic ovarian syndrome). I’ve put in a request for the full hystology report but it will take time. So maybe there is more to it than what was in the surgical report. My GP was confused by the lack of detail in the surgical report, and feels it is suspicious, which is why we are requesting the full hystology report as well.

I can sort of understand things being a bit narrow down there since I have never consentually had anything in my vagina. So maybe it would have been different if I actually used it? I don’t know. I’ve been on testosterone for 6 years, so things should have been atrophied and smaller, not larger.

[Fillabeana]

Hi Ceylon,
I still have all of my female parts, but I have had an open abdominal surgery (small bowel resection after ruptured bowel/peritonitis) and later bladder spasms.

The surgery was extensive, long and had an awful recovery…the surgeon said he had to run the entire bowel to make sure everything was intact. But I was so full of scarring/adhesions, that he had to chisel the uterus and the large intestine apart. Delightful. So now I have tons of adhesions, and I never was a candidate for laparoscopic abdominal surgery nor ever will be.

So there’s plenty of scar tissue and such in the bladder area as well.

I didn’t get bladder spasms for at least five years post surgery.

I started getting urinary urgency after a long (6 or 8 hours) horseback ride, and by day three (riding the horse still) I was urinating obvious blood. An ER trip showed no kidney or bladder infections or disease, I got referred to a urologist. The urologist ran a camera into the bladder (that was NOT fun…they said it would be like a women’s/gyno exam and they LIED!!) and said I had a blood vessel that had burst but was now OK, and they gave me some Azo over-the-counter for the urgency.

The urologist did not want to cauterize the blood vessel. It would quit bleeding on it’s own.

The bladder spasms happen towards the end of an urgency/bleeding episode. I feel a spasm/pain up on the left side of my neck when they happen. They got worse over the next 6 or 7 years, such that if I hadn’t ridden for two weeks or more, just an hour ride would start them.

I found out that I am either Celiac or Non-Celiac Gluten Sensitive. My husband turned out to be Celiac, and I went off ALL gluten, zero tolerance, with him…(It’s hard to keep the kitchen completely safe/clean for a Celiac otherwise)…

…and a lot of my own strange and intractable health issues went away. And came back with a vengeance, when I got accidentally exposed to gluten.

But anyhow, the bladder spasm thing has not bothered me at all since I figured out that I cannot be exposed to gluten.

Polycystic Ovary Syndrome is associated with Celiac disease, so you might want to ask your awesome doctor to run the blood antibodies panel.

There are a ton of misconceptions surrounding Celiac disease, probably because there’s not a drug for the pharma company reps to push, or ‘continuing education’ handouts so doctors will find more affected patients and prescribe more drugs, etc.
Anyway, you don’t have to have any digestive symptoms at all to be Celiac.

You don’t have to be malnourished as a child.

There are a TON of symptoms that Celiac disease can cause, as Celiac is an autoimmune condition and your body can mount an attack against things other than your digestive system directly. Skin, thyroid, liver, pancreas, nerve issues are common as are migraines, panic attacks, anxiety and depression. (Husband is MEAN when he has been gluten exposed, fortunately temporarily)
For a bigger list of symptoms:
https://glutendude.com/celiac/celiac-disease-symptoms/

Celiac disease was once thought to be really rare, but it is now understood to be from 1 in 100 to 1 in 133 affected. And 4 out of 5 people who have Celiac disease are undiagnosed.