Has anyone else experienced worse pain after cysto with distention?

[sweetpea_ae]

Hi, I am new here and very impressed by the support and knowledge I have found on this site. I am newly diagnosed and just had my first cystoscopy with distention and biopsy. The doctor seems to think this should have helped the pain, and should certainly not be hurting now.(5 days out.) I am experiencing severe pain when I urinate and my vagina actually feels as if I have fallen on the bars of a bicycle as I did when I was a child. Strange analogy I know, but that is exactly what it feels like. I am becoming very depressed due to the fact he makes me feel as if my pain is not real. I have had to quit working and the pain never ends. He has also acted stand offish about prescribing meds. I dont think I have had a normal nights sleep in months. I get up at least 5 times a night but usually more. Why does no one seem to understand or acknowledge how excruciating this is? I feel as if my family is tired of listening to me "whine" but I honestly feel isolated. Even with narcotic pain meds the pain never really leaves.

[jenleigh]

Some people are very stoic. For me, the pain was a nightmare. My urologist will not hardlygive pain meds. They can say what they want, but there is a misunderstanding of how painful this illness is for us. People have testified about this. People just don't know till they have this. That may be why your family doesn't understand. I have lost my friends and family due to this illness. I thought a lot about this and realilze more now that they just haven't gone thru this. People are also embarrased to hear about that part of the body, which is strange because everybody pees! But I understand. I think this disease either makes you or breaks you. (:hmm actually, it did both to me!)
My third hydro put me in a 6 month flare. Afterwards, with the pain I decided I would never do it again unless I had to. ( One of the hydros did help me earlier, but I don't want more damage.) To me the procedure itself is brutal. Some people are greatly helped by them. I"ll tell you more if you want to know. I hope you feel better. :hi: Jen

[littlemyrn]

Actually, hydros help me. They usually cut my frequency by half after I recover from the procedure. It usually takes me about 3 or 4 days to feel better. Do you have vulvadynia (sp)? Did your uro give you an antibiotic to take afterwards? You could have an infection. I wish you luck, I have gone through 4 hydros and I am heading to my uro's this morning to ask for another. I also went to PT yesterday (I have pfd) and got a tens unit. Wonderful. I was able to take 1/2 of my normal dose of pain meds. I hope you are feeling better soon.

[HGC]

I am also helped by hydros but it usually takes me about 2 weeks to feel better.

[ICNDonna]

I'm another who is helped by hydrodistention. Hopefully after you have had some time to heal you will feel better. Five days isn't really very long.

Sending warm healing thoughts,
Donna

[mary124]

Hi- I am another one who is helped by hydros. It is one of my main treatments. In fact I just had one about 2 weeks ago. It usually takes me a few days to recover. I work full time, have them done on Thursdays and go back to work on Mondays. They help with both freq./pain for about 6 months or so. After that I usually call my Uro and tell them I need another one. As for pain medicine, I see a pain specialist.

[patricia1]

Hydro's have never helped my IC symptoms either. But have you been checked for a UTI infection. After my last one, and I was not feeling better, but getting worse I had a huge infection from the surgery. So if you are not feeling better I would at least go have my urnine checked.

[kari1980]

When I was first diagnosed I had my first Hydro and it killed me! I was in so much pain afterwards for weeks, I didn't know what was going on. I swore to never have it again. I know it does help a lot of people, but I wasn't one of them. I won't even go for instills anymore. My doctor was pretty good about giving me pain meds though. Now I've recently moved and the doctor here doesn't seem to be as good about giving me pain meds for it. I'm really concentrating on the diet right now and that seems to be helping me the most so far. Hang in there..

Kari

[sweetpea_ae]

yes i am on a semi permanent dose of antibiotic and i am now 6 days out and have felt worse today than ever. I feel as if my whole clitoral area is damaged. My only problem is they try and tell you what your experiencing and it is not even close. I am so frustrated. I'm going to call my doc in the am. My nocturia is still awful. Also on elmiron and it doesnt seem to be helping either.

[patricia1]

I still suggest checking for UTI, even with the antibo. I still got one even though I was on them. Also Elmiron can take anywhere from 6 mths up to 1 year for full benefit effects to be known. I do hope you start feeling better soon.

[leelee88]

I had my hydrodistention in Nov 06 and I am still suffering severe pain at times... before the proceedure I was not in pain..So I know that is what has messed me up!!

[smcclafferty]

Me too...I never had pain until my hydro/biopsy/cysto 3 months ago. I am still suffering, and hope I will at least return to the state I was before having it done...

[LeeAnn]

The hydo w/ distention KILLED!! It was four years ago and it's a good thing I had no idea what I was getting into b/c I will never do it again. I sat in the bathtub for 3 days straight. My urethra and bladder burned SO BAD and I did not have any infection, the doc checked. I couldn't keep down the Urimax (like AZO) I kept vomiting it up. I remember just crying and crying and thinking "What have I done?" My dad drove up 8 hours to try and help me.

That's why I am now terrified of instills and plan to never ever get one.

I'm terrified of having a baby b/c, WHAT if they have to cath me?!?! I'm not scared of childbirth but I am terried of bladder flare ups!!! Maybe b/c flares last longer than the pain of having a baby. IDK but I'm scared to death of anything coming in/out of my urethra after that hydro!

I think sometimes my parents are really the only people who truly believe me about the pain. I broke my femur (leg bone) in high school and didn't cry. I knew it was broken and told my coaches that I had felt it snap, but they all said, "NO, if it was broken you'd be screaming." It took over an hour to drive to the hospital, and I didn't even tear up. I could tell you countless stories of how high my pain tolerance is and I think my parents are really the only people who honestly know how tough of a kid I was and how I never complained even if I felt bad.

But this IC really gets me down sometimes. IC honestly hurts worse than breaking my femur, breaking my wrist. I broke my nose 3 times. Last year I broke my C3 vertebrae in a car wreck. That didn't really hurt much, compared to IC it was nothing (lucky I didn't have a spinal cord injury). I don't know why it hurts more than broken bones, but it does. Maybe b/c it never ends. Well enough about me.

If you doctor isn't really listening to you and not prescribing pain meds, KEEP LOOKING for a new doc. Seriously! They should listen. If they don't you need to find someone who will. I've probably been through a half a dozen doctors in the fours years since I moved to Denver and I have found a PCP who will listen to me, Finally! I found a great ob/gyn who specializes in pelvic pain but she left to go practice in California & I'm still searching for an OB to replace her! Don't give up!!! You can even call these docs ahead of time and ask them if they have a special interest in IC or if they are willing to take you on.

[Laura Williams]

I feel like an idiot - but what are hydros? My doctor will prescribe Lortab, but only to take one at night. He doesn't want me to get hooked on them. I know I will not get hooked - because of how much pain meds I have taken in the past for other physical problems. I have used up my pain meds and am scared to ask for more (I take more than one/night after my weekly treatments).

I understand the family thing. I have had many physical problems in the past and they got tired of me whining then. They are all very upset that I have another problem and pain that they don't understand.

I know this sight will help us all.

[jen74]

A hydrodistention is a procedure where they fill your bladder beyond it's capacity while you are sedated. After they fill it up, then they let the water out and fill it again to look for pin point bleeding and such. It is suppose to be the gold standard for diagnosing IC.
I was told by my gyne that the hydrodistention is not really a perfect test in diagnosing IC. She said there were studies done where they did hydro's on people with IC and people without and some of the people without IC had positive hydrodistentions. It makes sense that this would happen because what they are doing is not really natural at all. I mean they are stretching the bladder beyond it norm. This could hurt even the healthiest bladder.
I myself was ready to have it done back in December and a week before I was to have the procedure, my hubby and I both researched it and I even asked my gyne about it and that did it for me, I called the doc back and said he could do a regular cystoscopy and that was it, no hydro for me.
He was able to see that I had IC with just a cystoscopy, so I an glad I did not go through that test. There are women on here that say it has helped them alot with their IC pain, so I guess it is helpful for some. I just went with my gut feeling though and decided not to go through with it.
Jen

[ICNDonna]

Usually the only time I need pain meds is when I'm scheduling another hydro. My symptoms are just beginning to show themselves; the hydro I had in February of last year has lasted almost 14 months now. I've been putting off making an appointment with my uro, but I know I'm headed in that direction.

This next one will by #41 and I'm not sure how I could have endured the past 32 years without them.

Donna

[Laura Williams]

Thanks Jen - I do know what a hydro is then. I'm glad I did not have it. I had the cystoscopy instead.

[sweetpea_ae]

ok guys, here I go again. Well after my extreme pain after the distention I ended up in the er. The er told me I had infection and changed my antibiotic to Septra. Called the uro Mon and he sd he looked at my results from the er and I did not have an infection he sd the pain is from ic and prescribed Elavil 25 mg at night and Lortab 7.5 for pain. Guess what? Still no sleep and still in pain. I see him on 4/17, next Tuesday, and he wants to talk to me about interstim. This seems kind of soon to me being I was just diagnosed, never had a bladder instill and he isn't willing to try other pain meds. He is already worried about addiction to Lortab. Also, I have read about the InterStim and it says it is not approved for IC yet. So I am severely confused. Please let me know if any of you have had this and how it works. It also says if pain is one of your prominent symptoms this will not help. It is mainly for urgency and frequency. I feel like I'm in the twilight zone!!!

[shelbyriva]

I think I had the same procedure as a hydro distension but it was called a Cystoscopy/Bladder Dilation....is that the same thing that people are calling a 'Hydro'? Mine was done to purposely "stretch" the bladder to make it bigger to hold more so I didn't have to pee 30 times a day and it worked like a charm. First time in 5 years I haven't been up at night peeing......yahoo!! I think some people have great results with a Dilation and others it doesn't work on. I guess I am one of the lucky ones that can use this as great relief.

[colourmetwice]

My first one was so painful (only a local anesthetic) that they couldn't complete it, though they felt they had a sufficient look. I was in so much daily pain I don't think I really noticed much of a change.

My second one I was put under for. Lord was I bawling by the next day. I had a three poound dog put his little paws on my bladder and I almost screamed. Everytime something brushed against it the slightest bit it put me in a world of pain. It took a looong time to mellow out (and the fact that this time they found bladder ulcers didn't help).

I know I need another one as we need to check the ulcers and I have changed my provider to the other side of the country, but I am so scared. That is an experience I do not want again!

Hang in there though...I promise it does eventually calm down.

[jen74]

Hi Colourmetwice,
I am sorry you had such an awful experience with the hydro. I dont understand why they would have you go through it again since they already know you have the IC and the ulcers. They can do a regular cystoscopy to check for any bad things like cancer and such. I dont think it makes sense for you to go through that again especially since it caused you to be in such worse pain with the last one. I would seriously rethink it if I were you or ask your doc if he could do just a regular cystoscopy to check things out. That is just my opinion though.
Jen

[Eccles]

I had no bladder pain until this procedure two years ago - now the pain is unbearable. It now seems to me that stretching an already inflamed bladder is barbaric; I wish I had never had it done.

[smcclafferty]

Me too! I had no bladder pain until the procedure. Mine was now almost 5 months ago.

[ICNDonna]

I, on the other side of the coin, don't know how I could have managed during my 32+ years with IC without the relief I experience from hydrodistentions.

Donna

[kjd]

I also find I am in so much more pain after the hydro! I had mine a year ago tomorrow and still in agony. I will NEVER ever have one done again!

[blendno14]

I had more pain after the hydro and I surely never gonna let them do one again.

[Moonheart]

Mine was five months ago and has been worse since two days afterwards. I'd say my pain at least doubled.

[mary124]

I along with ICDonna, have been able to live a decent life with having hydro's; along with my medications. (I am on Elmiron been on this since 1997); Effexor-XR, pain medications when needed and just recently my family doctor put me on Vesicare which has helped a lot). I would not been able to continue to work full time, raise my kids to the fine young men that they are today. Yes, I do have pain, and frequency and everything that go along with IC but it is manageable.
I just had a hydro about 6 weeks ago and yes it takes me a handful of days to recover and after that I am fine. I usually only miss the 2 days of work that I schedule off for the procedure; other than that I go back to work--I work as an Administrative Assistant and my Supervisors are very supportive of me and knows what is wrong so that if I don't feel great they know that they might not get a lot of work out of me that day or days but when I'm better then they will get more than the 100%. Since I have been ill I really don't think I have been out for my IC except for doctors appointments for this and my other illnesses and even then my supervisors lets me work flex time so that I don't have to take leave, the only time I had to take days off of course was when my kids were little and they were sick.
I was dx with IC back in 1992 after 5 years of going back and forth between doctors and having different tests and procedures.

[blue]

Some people are helped by the procedure, I was not. I had more pain for awhile. I was just greatful for the procedure. First off, they found a tumor inside my bladder, and it was removed. They weren't able to expand my bladder because of that. They went back in after awhile and did the complete procedure and diagnosed me with IC. The pain will lessen.

Try some AZO standard, heat on your belly, drink plenty of water, and maybe ice packs between your legs. Your Urethra is probably aggravated. The AZO will help with that, along with the ice. I felt silly at first, but had to do what was comforting.

I think you need a new URO. If your doctor isn't helpful, look for a new one.