Hysterectomy with IC?

[GriffsMommy]

I was wondering how many people here have had a hysterectomy after they were diagnoised with IC?

I know a lot of people had a hysterectomy and then afterwards were diagnoised with IC or found out that they problems they were having were not related to their reproductive system and were actually IC after all.

The reason I ask is because I know I have IC, PFD, VV, and endo. My dr has started me on a 6 month course of Lupron to try to calm down the endo. He did admit to me at my last appointment that I will need a hysterectomy after I stop the Lupron injections. My endo seems to make my bladder a thousand times worse when I get my period and I can barely move without feeling my bladder move and hurt with every step I take. I am more than willing to get the hysterectomy because if nothing else it should stop the ultra painful periods I get which leave me out of comission for at least two days if not longer.

I just wanted some feed back as to how much the hysterectomy bothered your bladder? Did you go into a major and long IC flare from the stress on your body from having the hysterectomy? My dr who is treating me now is a pelvic pain specialist and is about an hour and a half away from where I live. He does not do surgery so he told me to pick a local dr (I already figured out which one I would like to do it) and I will call to make an appointment with him in the next month or two. He is familiar with IC as he went to my pelvic pain specialists office to see what they do there and learn about IC. Of course I will ask him these questions when I go to see him but I'm just wondering what people's experiences have been with how the hysterectomy affected their IC. No matter what I do want to get it done though because my dr thinks my endo is def making my IC worse and I can't stand to get those periods that are so painful I want to die.

Any info you can give me from personal experience would be greatly appreciated.

[BBB]

Good Morning,
My hyster was just great. We actually did it to help the IC. No more hormones going wacky, periods, ovulating and bowels problems associated with the cycle.

Mine didn't hurt my IC at all. I think it help so much.

Hope this helps.
Betsy

[GriffsMommy]

Oh that is so nice to hear. Thank you so much Betsy! I'm really hoping it will help mine. My dr said he usually doesn't agree that a patient needs surgery so fast but because my endo is driving my bladder crazy he really thinks it is needed. I was actually bopping around in the car on the way home from my appointment last week because I was so happy he said that I will be needing one, I just want to get rid of it all. I really appreciate the response Betsy :smile tee

[dg2901]

All I can suggest is do your research regarding hysterectomy as this can cause other issues. I'd suggest reading up at hystersisters.com to 'see' peoples personal experiences.

My bladder pain started in Fed 03. After back and forth from my URO to GYN it was decided that my issues were GYN related (uterine and bladder prolapse causing the pain, and rectal prolapse thrown in for good measure). Because I was mid 30's, had already finished childbearing and was infact suffering from a significant prolapse issue I went ahead and opted for the hysterectomy and repairs due to being told that I'd wake up feeling like a new woman. WRONG! I woke up with the same pains. My prolapses have returned and I went into premature ovarian failure immediately after surgery. After dealing with my GYN for weeks on end post-op due to not being able to urinate, UTI's, etc and being blown off I changed Dr's. I found a wonderful UROGYN who is familar with IC and directed me towards a competent URO for the IC diagnosis and treatment.

So, it did nothing for my IC symptoms and only caused more issues in the GYN dept. I was stupid and didnt research enough, nor did I bother with a 2nd or even a 3rd opinion. Hindsight is always 20/20.

If youre comfortable with your decision, thats wonderful. Just know that once the surgery is done theres no turning back. And like I mentioned at the beginning of this post, please research and get all of your questions answered to your satisfaction.

Wishing you well...
D

[lisabar36]

Christine, what a great post! BBB if you don't mind me asking, did you keep your ovaries and did you have it vaginally? I hear vaginally can be much more painful for PFD. I also need one, I see the gyn for that Feb 5th, I am very scared. Thanks. Lisa:)

[tigger_gal]

my hysterectomy really helped me. Although it didn't stop any bladder pain, it took the pressure off of my bladder. I had cysts, fibroids, and endo on everything.
There is a possibility that once your uterus is gone the endo can attack the bladder. The flare lasted nearly as long as the recovery time. I was in the hospital about 36 hours, and after the first 24 I only needed a vicodine for the pain.
I really hope that it helps you out.

[sandberg4]

I had a hysterectomy a few years after developing IC. It didn't bother my IC at all that I remember and I even had my bladder attached to my pelvis. Not sure how they do it. Even though my ic has gotten worse through the years, I don't remember the surgery affecting it. I only had fibroids though.
The one thing I do regret was having him take my ovaries. He told me that anyone over 45 they usually just take the ovaries and then you go on estrogen. At the time, I thought, okay. Didn't look into it and find out what instant menopause does to the body. Right after that they came out and said how estrogen is bad for you. The whole thing made me angry but it was my own fault for not doing the research and for trusting him.

[BBB]

I had my ovaries out too and have not taken any estergon in two years. So far so good, however I think it is time to start taking some. The thing is I never went into menopause. I also had my bladder tacked up, my pelvic floor re-built (they call it rectocele and urocele) spelling is wrong, sorry. That is where they put the colon or anus back into its place and the front stuff back into its place. Pretty technical language huh? Basically, everything was falling down and out.

The one thing is it is a very long recovery. 8 weeks and it hurt like a MFer afterwards. My vag is so tight and new (yeah!) I like being able to feel normal instead of colon being in there and my uretha sliding in too!

I think it helped the PFD...in any event I had to have it because it was terrible before having stuff literally falling out of me. After the healing of the surgery I stopped having the horrible charlie horse down my butt into my legs. My new URO/Gyno and PT said the Doctor did a very nice job. Oh, and my husband said it is a good job too. At first he said he felt like he was cheating on me with a 16 year old. LOL...Got to take the compliments where I can get them after having had 3 kids and what they do to a womens body.

Hope this "graphic" post helps! I have never, never, never missed having a period, ovulating or PMSing....ever! Oh, and they did do it vaginally.
Betsy

[lisabar36]

Betsy, thank you so much for explaining that. I have a tilted uterus also and I remember my gyn telling me when I was in my 20's I may have to have that out, it apparently moves and causes me all kinds of pain. I always feel like everything is falling out, its horrible. Thanks again. :)

[dancemomof2]

To be totally honest, my IC pain has not subsided any since my hysterectomy. The only thing that happened was since my blader was tilited forward on my uterus that relieved some pressure but no pain. I was thinking this would be a quick fix also and was grasping but got no result. I guess with IC the pain will shine through and show its ugly little face no matter what.

Why would he put you through the Lupron if his plans were a hysterctomy to begin with, that is odd to try a treatment as evil as Lupron and then go forward anyway with the hysterctomy. Only thing be sure your dont with children because this is so final. Of course LOL you like me with teenagers and toddlers know all about this. Take time to make this choice. Godd luck

[GriffsMommy]

Thank you all for the information. I have known for awhile that I might have to have the hysterectomy done because of my endo. My mother had one and I always had it in my mind. I by no means think it will make my bladder better, I know they are two seperate issues. The only time they seem to come into play with each other is when I get my period. The endo literally flares my bladder so bad when I have my period that it would feel better if it fell out. I totally trust my dr and will do my research but know that he has my best interest at heart. He did even tell me that he usually tries to avoid hysterectomies but that I def do need one. He doesn't do surgery anymore himself so I'll have one of my more local gyn's do it.
I just hope it doesn't put my bladder into a horrible flare up but if I did it does then I'll deal with it because I'm going to make sure my dr has my local gyn give me adequate post op pain control.

[GriffsMommy]

LOL, Leslie, yes, I am totally done with kids. I couldn't stand to have anymore, the house is too full as it is. I am not sure why he wanted to do the Lupron first except that he is trying to get everything calmed down as much as possible before hand. I'm actually going to ask him at my appointment this week if we can cut the 6 month course of Lupron short to do the hysto because it is going to cost me a fortune for the Lupron injections each month and I really don't want to end my short term disability to go back to work for a month or two to go back out again and get the hysto done. I guess I'll see what he has to say.

[tigger_gal]

Oh I don't blame you. They took everything in me except my cervix.

[lisabar36]

Hi Leslie, my docs reason for the Lupron was to stop my irregular bleeding and heavy bleeding and pain with my period, and give me more time so he can get my IC more under control as well as my pain and PFD. He wanted me to finish therapy first, and be on my highest dose of neurontin, because he said the better shape I am in, the better the surgery will be for me. Its just buying me some time. Now of course I have the endometrial biopsy tomorrow and if that comes back abnormal he explained he would send me for a hysto right away and also if the lurpron does not stop my bleeding. Which so far it has not, but I only got one shot. They say it can take 2 shots to stop your period. The nurse also explained to me, people that get Lupron just for pain reasons with there period, they use it to see if it actually stops the painful periods and then they know periods are a major trigger and whether they should go ahead with the hysto or not. If the Lupron actually helps the pain, it gives them an idea that periods are triggering the pain. :)

[BBB]

Dance...Too funny all the way around. "evil medicine" and toddlers and teenagers. How did we get toddlers and teenagers. And now my teenager is an official adult, he turned 21. That is a long way from my other son, Dean at three!

Tig...Same with me, I said take it all.

I wanted to clarify that I didn't in any way, shape for form think my hyster would help with my IC, with the exception of the PMS, Post MS and ovulating! All of those things caused so much swelling and my bladder is a touch me not. I had the ovaries out because I couldn't handle my hormones at ALL. Like I have said it has been two years and I haven't taken a hormone at all. I have tried them and not for me, but that is a different post.

Now I had the spark procedure (tack up the bladder) and pelvic floor lift (for lack of a better name instead of writing everything out), because I was incontinent with urine and fecal (owww...sounds gross, TMI sorry).

There is two groups of people when it comes to hysters. One for and one against. My thougt was why not take something out that I am never going to use again. I have not regretted it one day.

Don't worry Griff...your doctor will make you comfortable. Mine was pretty stingy on the pain meds and even he gave me a Dilaudid drip after the surgery.

Again, Good luck!

[lisabar36]

Hey Christine, I am with you. I am going to ask him to cut the lupron short because it is not stopping the bleeding at all. I do have my app Feb 5th with the gyn that will do my surgery. I just want to get this over with, I think as long as they control my pain, I will be ok. I agree with you as the Lupron is expensive. I think he has our best interest at heart and he will guide us in the right direction as to what we should do. :)

[sandymarie]

I had a hyster. b/c they thought that I was in so much pain due to endo. After I had everything out that I could , my gyno. decided that it might not have been the endo, but instead a bladder issue. I really think that either way I did not want more children so I would not have gone back for anything. At least half of the pain was gone. Whether I had endo or not I still think that I am better off without all the period pain. I do take monthly shots of hormone, but I really do not miss the other. I tore really badly with my second child and had to have 120 stitches and now I am dealing with the rectum problems along with ic, fibro, sagging bladder, and arthritis. I had a total hyster. I do pray that you will do well. I really think that you probably will. Good luck and God Bless you whatever you decide.

JJ:)

[GriffsMommy]

I agree with you Betsy, it's either black or white. People either agree with it or they disagree. I do want everyone to understand that I do not expect the hysterectomy to make my bladder better in any way. The only thing I am expecting is that it will at least stop that horrible bladder pain I have when I get my period since obviously I won't have my period anymore.
It is documented that I have endo though and my dr really does think that the endo is making my bladder worse and since I already had it grow through my bladder once before that I should have the surgery. I am kinda worried that I have endo ON my bladder because from what I have read they can't remove it if it's there.
I trust my dr 1000% though and if he thinks this is what I need then that's what I want to do.
Yea, Lisa, I really think I'm going to talk to him about not doing the whole six month treatment of Lupron. It's sooo expensive for me and if I do it a couple of months to get the endo and the bladder calmed down then I would rather stop it early and just get the surgery done. I don't know if the Lupron is working for me yet though because I haven't gotten a period which I should be any day now. My pain is pretty much still the same so I want to get through at least two months to see if it improves any. I'm just glad to hear the people who knew they had IC when they had their hysterecotomies their bladders did not get worse. I am prepared for a flare from surgery but as long as it's not permanatly worse than that's fine with me. Thank you everyone who has given me their input.

[Penny24]

was the Hysterectomy more painful than ic pain?

[Mothergoose]

It was a different pain cause you know it will stop, somehow you can tollerate more when you know it will end. Good luck

[lisabar36]

My hysterectomy, my bladder was more painful then IC bladder pain after surgery, but it went away in time. If thats what your asking?

[mary124]

Dx with IC in 1992- had a hyster. in 2000. Was in remission before I had a hyster for almost 5 years. After having my surgery had no pain what so ever , but my IC came back like there was no tomorrow. Sure I have had "mini remissions" but nothing like I had before 2000.

[sandberg4]

Mary124,
If you don't mind my asking, did they take your ovaries? Are you on hormone replacement?
Thanks
Anne

[glitteringglory]

I was diagnosed with a uterine prolapse yesterday. I always thought I had something other than IC. 2 years ago after complaining about the pressure pain, my urologist said it was related to IC-it is a complete package. I took her word for it. I tried Elmiron (took it for over a year) & it did not work for me. I tried acupuncture, herbs, and meds, meds, meds, nothing worked to relieve the pressure. Nor did the diet work :headbang:. I even tried the elimination diet-still no results of alleviating the pressure. I've always had a horrible pressure pain regardless of what I did and it was/is constant. The pressure pain exceeds the IC, and it feels like rocks down there-and that something is going to fall out of me. So, when I was examined this week, my doctor surprised me as I thought I would just be diagnosed with PFD. He said my uterus was really low (where my bladder should be) and also shaped like a horseshoe. He said it was the oddest thing he's seen and he has done thousands of exams:hmm:. He said I would probably feel much better with it removed (just the uterus-my ovaries are fine).
I have had 2 children-they are now 8 and 10 years old and I do not plan on having anymore children as I was "fixed" 7 years ago. My grandmother had such bad uterine prolapse, part of it literally came out-so I worry about this happening to me. It seems this runs in my family.
I did want to get a second opinion-from the best GYN in town. I have an appointment with her in late July (she is booked solid so I am waiting a month to see her-I hope it is worth the wait). I will make the desicion after talking to her and hear what she sees from the exam and other tests. A part of me is thrilled that the pressure pain may be fixed as it is painful and I have been taking hydrocodone for 2 years due to this pressure pain. I would love to not need to take this med-it is my goal to be on as little medicine as possible. But the other part of me dreads surgery and being in a hospital. I had a surgery in April (a total hip replacement in my right hip) due to legg perthes (it's like avascular necrosis but in a child) from when I was a kid. It damaged my hip bone and caused me as an adult to have intense hip pain, and losing the ability to walk. I am much better now-walking well and feeling great, hip wise but I do dread another major surgery! This is why I wince at the thought of a hysterectomy. I feel like at the age of 34, I have too many health problems! All from someone who hates hospitals, procedures, medicines, etc....
Looking forward to JUST having IC:loco:, not that I like IC, (I don't) but I hate having multiple issues:bonk:!
Any advice on hysterectomy due to uterine prolapse would be much appreciated! I would like to know if it really helped the pressure issue and constant uncomfortable feeling down there, etc....Thanks!! :help: