Latest Blog Article: Interstitial Cystitis May Effect One Out Of Every 26 People In The USA
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  1. #1
    ICN Member GriffsMommy's Avatar
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    Question Hysterectomy with IC?

    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.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

  2. #2
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    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
    BBB - Diagnosed with Moderate/Severe IC (age 12), Severe PFD and V V (age 21), IBS (from birth) & Gastroparesis (age 42)

  3. #3
    ICN Member GriffsMommy's Avatar
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    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
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

  4. #4
    ICN Member dg2901's Avatar
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    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
    Last edited by dg2901; 01-13-2008 at 06:57 AM. Reason: add-in

  5. #5
    ICN Member lisabar36's Avatar
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    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
    Lisa
    Current meds:Elavil, Lortab as needed, Vivelle dot hormone patch 0.1mg, estrace cream, lidocaine ointment, pepcid
    Diagnosis: IC in 1999 , IBS, Pelvic floor dysfunction, vulvodynia, vestibulitis, chronic low back pain, scoliosis, hunners ulcers on bladder, hysterectomy 2/08, fibro 3/08, sciataca


    Me and my girls, my son, me and my wonderful fiance, and our puppy Miley (who loves to cuddle).

  6. #6
    ICN Member tigger_gal's Avatar
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    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.
    'The will of God will never take you where the Grace of God will not protect you.'

  7. #7
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    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.

  8. #8
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    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
    BBB - Diagnosed with Moderate/Severe IC (age 12), Severe PFD and V V (age 21), IBS (from birth) & Gastroparesis (age 42)

  9. #9
    ICN Member lisabar36's Avatar
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    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.
    Lisa
    Current meds:Elavil, Lortab as needed, Vivelle dot hormone patch 0.1mg, estrace cream, lidocaine ointment, pepcid
    Diagnosis: IC in 1999 , IBS, Pelvic floor dysfunction, vulvodynia, vestibulitis, chronic low back pain, scoliosis, hunners ulcers on bladder, hysterectomy 2/08, fibro 3/08, sciataca


    Me and my girls, my son, me and my wonderful fiance, and our puppy Miley (who loves to cuddle).

  10. #10
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    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

  11. #11
    ICN Member GriffsMommy's Avatar
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    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.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

  12. #12
    ICN Member GriffsMommy's Avatar
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    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.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

  13. #13
    ICN Member tigger_gal's Avatar
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    Oh I don't blame you. They took everything in me except my cervix.
    'The will of God will never take you where the Grace of God will not protect you.'

  14. #14
    ICN Member lisabar36's Avatar
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    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.
    Lisa
    Current meds:Elavil, Lortab as needed, Vivelle dot hormone patch 0.1mg, estrace cream, lidocaine ointment, pepcid
    Diagnosis: IC in 1999 , IBS, Pelvic floor dysfunction, vulvodynia, vestibulitis, chronic low back pain, scoliosis, hunners ulcers on bladder, hysterectomy 2/08, fibro 3/08, sciataca


    Me and my girls, my son, me and my wonderful fiance, and our puppy Miley (who loves to cuddle).

  15. #15
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    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!
    BBB - Diagnosed with Moderate/Severe IC (age 12), Severe PFD and V V (age 21), IBS (from birth) & Gastroparesis (age 42)

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