ic onset after hysterectomy

[journey]

I recently had a hysterectomy and after being treated unsuccessfully for a bladder infection, I have been diagnosed with IC due to ongoing pelvic pain and painful urination. My doctor did several weeks of rescue instillations thinking that would possibly resolve symptoms, but that was not enough. I have been on elmiron and elavil for 3 weeks and my doctor assures me that after several months, all my symptoms will be gone. He says that onset of IC following hysterectomy is not permanent and can be resolved. Does anyone know if this possible or am I in this for the long haul?? I have been losing faith as the weeks go by.

[Silverfern]

Hi and :welcome:

As far as I'm aware IC is incurable but you can go into remission. I've never heard of IC that comes on after a hysterectomy to magically disappear some months later.

I had some symptoms of IC prior to my hysterectomy, but they got a heck of a lot worse afterwards. Something definitely happened during that surgery that gave me fullblown IC. Unfortunately it's never resolved.

I do hope your doctor is right and your symptoms disappear never to return. I'll keep my fingers crossed for you. Take care.

Hugs

[ICNDonna]

I developed IC symptoms following a hysterectomy and still have IC. And my hysterectomy was done almost 33 years ago. Are you seeing a urologist for your IC? If not, you might think about it.

Donna

[barbour1]

I wish we could do a pole and find out how many ic patients have the same chronic illness ,there has to be a link some where.maybe some thing as dumb as a shot we recieved or food allergies ,some thing..Any how good luck!:lmao:

[barbour1]

Some doctors no nothing about ic! The ER for instance depending on who you get might try to treat you with a antibiotic and it's not even an infection.I think the doctors need a lesson in ic.The first urologist i had did the surgery found out i had ic and did nothing sent me to a better urologist and that urologist was upset that the first would do a surgery with no plan in place to treat it.And for a couple of years before that my own Doc was saying it was stress.Stress the nasty catch all word for when they don't no what's wrong with you..:rant:

[sami4]

What type of hysterectomy did you have? Was it cervical sparing? How long after the hysto did you notice symptoms?
Sammie

[journey]

It was a vaginal so cervix is gone. Why do you ask? I would say I noticed symptoms within 2 weeks of surgery and was treated for bladder infection for 3 weeks with no response to antibiotics.

[journey]

What is the benefit of seeing a Urologist? What more can be done at this point.

[mary124]

I was actually in remission before I had my hysterectomy which was in 2000, but within 2 weeks or so, remission was no more. Since then, its been a downhill battle. Wish you luck.

[sami4]

The reason I asked the type of hysterectomy is that with the newer cervical sparing laproscopic Hysto, their are a lot of critical nerves left in tact because you retain the cervix. A lot of the pain after hysto is probably due to nerve damage, scaring and disruption of blood flow; by keeping the cervix and doing the whole thing laproscopic you lessen the amount of nerve damage and scaring and hopefully lessen the painful aftermath. Only time will tell on this idea and hopefully anyone on the board who has had one of these hystos will chime in and let us know that they think?
Sammi

[L. Thomas]

I was diagnosed with IC after a hysterectomy. I do not think that the hyst. caused the IC.

My urogyn thinks that it may be a disease that is "always there" but it shows up after some type of bladder trauma. It makes sense to me. I difinately had trauma after a 4 1/2 hour surgery to correct multiple pelvic problems (I signed for 7 different procedures before the surgery).

[sami4]

I asked Dr. Deborah Wilson a Scottsdale Gynecologist and Laproscopic surgeon about her experience with the new Laproscopic cervix sparing Hysto. She said in doing over 2,000 of these procedures she has not had one report of IC pain being increased or IC symptoms following the procedure.
So, hopefully maybe the connection to the older Hysto procedures where they do a lot of nerve cutting will be a thing of the past and one less problem for bladders.
Sami

[Katrina]

:welcome: to the ICN
My IC was greatly worsened by my abdominal hysterectomy.

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I wish we could do a pole and find out how many ic patients have the same chronic illness ,there has to be a link some where.maybe some thing as dumb as a shot we recieved or food allergies ,some thing..Any how good luck!


I do think that poll and probably a poll about IC and hysterectomies exsists on this forum somewehre....or at least one...look around do a search!!

Hopefully you will do a lot better soon.'

My thought that is if your diagnosis of IC comes after a surgery look into
Pelvic Floor Dysfunction because it is likely that is part of your problem as well!
http://icandme.9.forumer.com/index.php?showtopic=6 pelvic floor dysfunction (PFD) learning to relax the muscles treatment options symtpoms of pfd and more

[sami4]

Katrina, I think we tried to get a poll going but the response wasnt good.
Sammi

[dminton]

I had IC before my hysto, so I don't know what to say. It hasn't really changed much, and I'm 6 months post-op. I did have a very bad bladder flare-up as soon as the epidural wore off, but it didn't last, then I had a couple of good months, then a flare again. Pretty much the usual for me, same as before the hysto.