Questions - Pain after Hydrodistention

[LisaRose]

Hi, I shared my story earlier, but now I can't find the thread to update. Anyway, I had the hydrodistention 2 weeks ago and I have some questions, hoping someone could help me out. It took me about 1 week to recover from the procedue. The second week, last week, I noticed an improvement. I was able to cut my pain meds (percocet 10 mg) from 4 to 3 a day. Not huge, but still good. Frequency was also improved.

Then 4 days ago I got suddenly worse. The 4 a day percocet do not even kill the pain, just help. I felt better than this before the procedure. I seem to have a mild virus, as I have a sore throat, and I think maybe that is why I feel so bad. Has anyone had a flare from getting a virus? It seems to me that when the throat hurts more, the bladder also hurts more (and vice versa).

Could I still be recovering from the procedure? It seems too long, but I don't know.

Another question I have is that my urologist said that during the procedure, my bladder capacity was much more that he would have expected for someone who has IC. I think maybe he was questioning whether I had IC or not. Does everyone with IC have very reduced bladder capacity? Although I have a lot of pain, I don't suffer as much as some with frequencty. Sometimes I go 20 times a day and sometimes on better days only 10.
I've done my own experimenting with trying to stretch my bladder by drinking a large quantity of water and then holding it. It seems to help with frequenncy. Maybe that made a difference?

Another question I have is pain. Do you all feel it only in the bladder? I ask because my pain is in my bladder, but I also feel general, all over misery, much like a severe flu. I am wondering if that is normal for this condition.

[ICNDonna]

Have you been checked to be certain you don't have an infection? If not, I suggest you do. I know of some people with interstitial cystitis who have normal, or larger than normal size bladders.

Donna

[LisaRose]

Thanks

Thanks for the suggestion, I needed to call and make a follow up appointment anyway, so I asked about that possibility and they are going to have me come in a get tested.

[wheresemily]

pain after hydrodistension

I too got worse after a hydrodistension. I had the procedure and my pain was immediately worse (which is supposedly normal) but my pain continued to be worse to the point that i had to take four times my normal pain meds just to cope with the pain enough to sleep eventually. Everyday was pure torture and I regretted the procedure so much. Eventually I read a post about almond milk so I tried it and a few days in, my pain was returning to the level it was pre-hydrodistension. It has been a couple of years and I recently tried to stop the almond milk and the severe pain returned. I have no idea why the almond milk helps but it does and I am just so thankful for it. Now my urologist wants me to try botox injections into the bladder and urethra but I just read a description of the procedure that includes a hydrodistension so now I am terrified to do it. I can't go back to that level of pain everyday, it's so awful.
I don't know where to find a thread about this but I just need to vent. my brother in law and sister help me financially since i can't work and am in bed most of the time. he is a nurse and he has decided that since there is no physical proof of I.C. it is a psychosymatic condition that merely represents my emotional pain and that I can't tell the difference between my emotional and physical pain. This has been the most hurtful thing to me because I suffer so much everyday and my support system is so small that him thinking this and starting to convince my sister of this is really leaves me feeling alone. Now he is talking about withdrawing their financial support and I am trying to figure out a way to support myself from home. Even if they don't stop the support I have to because I can't be taking money from someone who basically doesn't believe me. the money thing is hard but like I said more than anything I am just so hurt. He's never even talked to me about my condition or spent any time with me but he knows I was abused in my past and as a nurse it is his opinion that I.C. isn't real. I did have inflammation show up in my last cystoscopy. I hope if you read this and have a loved one with I.C. you will take them at their word because the only thing more painful than living with the constant pain of I.C. is going through it alone and feeling accused. I can't wait until they make that urine testing available to prove I.C. and I read that they have found a mark in the brain that indicates when a person has sufferrred chronic pain. I will happily take those tests and show them to anyone who will listen. I don't even feel like I can talk about my pain or condition anymore, it's just humiliating if you know the person doesn't believe you. it's so insensitive. anyone been through this? Any words of encouragement? I could really use it.

[LisaRose]

Sorry

I'm so sorry you are going through this. It's bad enough to be in constant pain, but to have family not believe you or think this is all in your head is horrible. Your BIL needs to get educated on IC. Just because he is a nurse doesn't mean he knows anything about IC. I'm new to IC, but I have fibromyalgia and I have run into a lot of ignorance about it. People think just because you look fine, you are just making it up, or trying to get sympathy or something. If they only knew. I learned to not talk about it much and get a thick skin. Some people are just plan ignorant, and you can't do anything about it.

I am lucky to have a supportive hubby, but I'm sure even he gets tired of my complaining and not being the wife I used to be. But we are in it together and we do the best we can. I work every day on keeping a positive mental attitude. My current Urologist is a total horses ass, and I can't change doctors right now. So I meditate, journal and do other things to keep myself balanced, as seeing him just me depressed. I look on this as my job right now - to be the best I can be, under the circumstances.

So you need to look on it as your job - the only one you can do right now. An don't feel bad about taking help from you BIL. Someday you will be back on your feet and pay them back in some way, but for now take all the help you can get. You would do the same for her, if the situation was reversed, I'm sure. Maybe you could take him to your next doctors appt, so your doctor can explain it to him.


Again, I'm so sorry you are going though this. Please feel free to contact me directly if you need to talk.

[DaniMSC]

I can't imagine how awful that must be- to be in as much pain as you are, and to have to go through all the testing and painful procedures that people with IC must go through, and then have someone who probably hasn't done a minute of research on the disease 'decide' it is all in your head. Just ask your BIL- "Would you want a catheter jammed up your urethra if it wasn't really necessary??" Or all the medications we have to take with awful side-effects! Would any of us put up with the constipation, fatigue, nausea, dry mouth etc. if we didn't have a problem we really hoped would get better??
I'm preparing myself to go through something a little bit like this- I haven't gone to work in a month, and although I've been communicating with my work, they have no sympathy or understanding for me because, I assume, they don't know what IC is although I've explained in my emails. They said I have to come back this week and start making up the days I've taken off (working extra hours) and I"ll also receive a dock in pay this month. It makes me feel like giving up. I'm already nervous about going back since the workday is much more strenuous than my life the last month- and now they're saying I will be working MORE?? I feel like the world punishes sick people. Sorry that's not words of encouragement. Can you mail your BIL the wikipedia entry for Interstitial Cystitis? Ask him-Why would anyone give up chocolate, coffee, alcohol, pizza, sex, etc. if it wasn't because they were in huge amounts of pain?

[wheresemily]

Thanks Guys

Thank you for your replies LisaRose and Dani. It feels really good to have some support. like you said, people don't believe you if they can't tell by looking at you. My mom died after 13 years of horrible illness and unfortunately even though she genuinely was sick she would use it and guilt to have everyone in the family do anything she wanted. I'm not being callous, she really did do this. she would moan really loud and then stare at you to make sure you noticed. She was controlling like this before she got sick. anyway my point is not to slag my mom, I understand why she was like that but it was so stressful on us family members that when I got sick with I.C. I vowed to myself not to be anything like that so I don't show that I'm in pain unless it is at the level where I can't get out of bed and I have to moan but even that I do in private. So I think they don't see the problem, just hear me talking about it. A level of pain whre I don't have to physically cry out is still nearly unbearable because it is constant and just nags at you; very draining. nonetheless the real problem is my BIL because he is putting stipulations on receiving the financial help. He offerred me $20/hour to volunteer one hour a week at a food bank or somewhere like that, he said it would give me fun money to shop with. I was so insulted by this because obviously you think that if I just had the right motivation (ie. money) I would get my ass out of bed and out of the house to work. I knew his thinking was to trick me out of my "faking" so that he could prove over time that I could in fact be working. He really must think I'm stupid and he really must think I'm faking. It just hurts so bad. I haven't talked to him about any of this, we never have talked much because it's awkward with him but he tells me these things through my sister. He thinks my dr is a pill pusher because he is willing to treat my pain. I think my dr. is an angel, one I thank God for everyday because I know from experience how leary dr.s are to treat pain and I've read many posts from women who have no pain medications and have to suffer through IC with no relief. that terrifies me. So the situation is complicated. I'm scared to talk to my BIL about it, I worry it will end in a fight but I am hoping I can find some way to earn money with my laptop so that I can just say "thanks, don't need your money anymore" and just get away from them. He is a tough love, controlling,dominating kind of person so I'm still not sure if I would get anywhere talking to him about this. Anyway thanks so much for letting me vent and taking the time to respond. I haven't had anyone to talk to about this because my sister is my best friend and she doesn't want to talk about this anymore because it puts her in the middle so it's nice to have an outlet with supportive people. At least I know you get it.
I'm sorry to hear about your troubles at work, that's awful. I hope they become more understanding and I hope you have vacation or sick time to take a rest when you need to. I ended up losing my job because of I.C. and now I live off CPP disability and a little from income assistance but it's not enough because medications are so expensive. I really hope you have supportive family around you to help you if that happens. just do your best and know that at the end of the day you have people here who understand what your going through and care.I'm sorry I got replies from both you LisaRose and you Dani but I can't see that screen and remeber what you said but not who said what so forgive me for not speaking to you by name. I'm still figuring out how to do this. I know one of you said your dr. is horrible and maybe someone on here can direct you to a good dr. who is compassionate about ic. I'm sure there must be a list somewhere of drs who treat ic; oh yeah but you said you couldn't switch drs right now. I will be praying for you and for your dr to treat you with the respect and compassion you deserve. I'm glad you have a supportive husband, that is great!I hope you guys have a good day and feel free to email me if you need someone to talk to. thank you for taking the time to reply to my post and for your caring attitudes. I will try to stay positive about things.
Crystal

[Mothergoose]

lisarose

Not everyone has a reducded bladder capsity with IC, I have IC and retention, the retention has caused my bladder to streach out really big.

MG

[jenibenni]

I too have had complications after having a cystoscopy with hydrodistention. My doctor said that since I have IC I will have more immediate pain, but I wasn't expecting all the other symptoms. I suddenly came down with more pain, an awful headache, and a sore throat. I thought maybe I came down with an infection since my urethra started hurting again, but I haven't had a fever or any chills. It's really frustrating, no one knows what it's like unless they are going through the same thing. I am going to call my doctor in the morning, hopefully he is understanding. There is this huge stigma attached to pain pills, which I understand, but at the same time no one deserves to be left in excruciating pain.

[ICNDonna]

Jenibenni, if you had a general anesthetic for your hydro, the sore throat could easily be caused by the instrument that is placed in the mouth and throat to keep you from smothering on your tongue --- it's called intubation. I always have a sore throat after general anesthesia.

Donna

[cgow]

I to have just been diagnosed with IC. Nobody at my job beleives me. They think I am an old lady and just pee a lot. I am 55 and most of my coworkers are 30, I am a workers compensation adjuster and it is extremely stressful. I am on disability for now.But only because a physcholgist said I was depressed. My uro will not even help with short term disability. I fear I will be fired once if I return to this job. I have to have it for insurance purposes. I urge you to file for disability. SSDI. It cannot hurt. You may be denied, but get an attorney. This is the worst thing I have ever experinced in my life. I have pelvic pain, back pain, weak, and yeah I pee like 20 times a day and at night. I am so sorry for everyone with this. I can't cope. My Dr. said I am pessamistic , yeah, I am everyday it is something new to deal with.

[jen74]

Cindy, I have to agree with you, this is the WORST disease ever! I have a lot of other health issues, but the pain from the bladder is the worst. When someone tells me I am pessamisitc, I tell them, no I am realistic! When you are dealing with a debilitatingly painful disease you are going to have anxiety, depression and have feelings of negativity. What makes me laugh is the people that usually are the ones to tell you that you are pessamistic are the ones who have NO CLUE what it is like to have chronic pain all the time!!!! Yeah, easy for them to stay so positive!

I to have just been diagnosed with IC. Nobody at my job beleives me. They think I am an old lady and just pee a lot. I am 55 and most of my coworkers are 30, I am a workers compensation adjuster and it is extremely stressful. I am on disability for now.But only because a physcholgist said I was depressed. My uro will not even help with short term disability. I fear I will be fired once if I return to this job. I have to have it for insurance purposes. I urge you to file for disability. SSDI. It cannot hurt. You may be denied, but get an attorney. This is the worst thing I have ever experinced in my life. I have pelvic pain, back pain, weak, and yeah I pee like 20 times a day and at night. I am so sorry for everyone with this. I can't cope. My Dr. said I am pessamistic , yeah, I am everyday it is something new to deal with.

[cgow]

It is horrific to me. My pelvic is on fire. My doc wants me to have hydrodistension done and I am really afraid. I am afraid to eat anything for fear it will set me off and I have 8 kidney stones. My luck is I would pass them during the procedure. Oh what fun. I was just prescribed Evavil today and that is all till infection goes away. I've only had it a month. really, how bad is that?? My boss acused of me of sitting at home kicking it. I reported him to hr, he is clearly in violation of FMLA. I have people at work that get more sympathy after having had gastric bypass and are on std from complications. An elective procedure. How screwed up is that?

[jen74]

Oh yeah, I know what ya mean. People just dont get it! I swear if someone came up to me and said "listen, if you let me chop off your arm, all your bladder pain and issues will go away", I would do it!!!! I mean it, I really would to get rid of this horrible pain!

It is sad that you have a disease that you did not ask for and you are suffering. Yet a person at your work has an "elective" gastric bypass, and they are given all the sympathy?? That is wrong on so many levels. You could actually go after your boss for even saying something like that. If you are on FMLA( which is a law that applies to everyone), he has no right to say anything to you. That is horrible. See, I am normally a very nice person and would NEVER wish this hell on anyone. But some people ( like your boss) should really have to spend a few months in your shoes and see how it feels! I have had some pretty bad health issues in my life ( I had an exploded tubal pregnancy, my tube ripped right in half, I almost died), but I gotta say, that was a walk in the park compared to this pain. People have no idea just how bad it is. I am sorry you are suffering with this. I did not do the hydrodistention myself. Actually the uro that diagnosed me only had to do a regular cystoscopy and he saw that my bladder was severely inflammed and that is how I was diagnosed. Maybe the elavil will help you. It has been known to help some with the IC pain. It made my bladder flare.( this is not common though), it usually helps some people with IC or it just does not help. I am very sensitive and get reactions to a lot of meds so maybe that is why I reacted bad to it. I hope you can get some relief soon... Hang in there.

It is horrific to me. My pelvic is on fire. My doc wants me to have hydrodistension done and I am really afraid. I am afraid to eat anything for fear it will set me off and I have 8 kidney stones. My luck is I would pass them during the procedure. Oh what fun. I was just prescribed Evavil today and that is all till infection goes away. I've only had it a month. really, how bad is that?? My boss acused of me of sitting at home kicking it. I reported him to hr, he is clearly in violation of FMLA. I have people at work that get more sympathy after having had gastric bypass and are on std from complications. An elective procedure. How screwed up is that?

[cgow]

Oh he will be sorry for talking that way to me. I reported him to hr, whom I don't trust either, but I copied her boss as well. I phones are great for recording!! Worth every penny I paid for it. FMLA is a federal law. My company is notorious for firing people after they get back from std. I know have some amo against them. They take your work over and look for every thing you did wrong. He has known for months I had bladder issues. I have seen many people be written up or put on warning after being on std. But I am prepared for it. It makes me angry because I hurt so bad and am very upset most of the days and am so stressed out trying to get std approved and going to dr after dr. It just not seem to end. I even broke the handle on my toilet today. It is under warranty so I get a new toilet. How ironic is that?? Today was better I had some pelvic floor therapy and she gave me these patches to put over my bladder called PURERELIEF BY cieaura and I actually peed less than 20 times today. Well see I hate to get excited because with this illness, its day to day. But it has helped. But I also am trying to eat just rice and chicken and raw veggies. It's hard to know what is really working. I take the Elavil tonight and pray it does not flare me out.