It hurts when I sit or drive- Help.

[Rebecca M]

Hey guys- for the past few weeks I have had pain when I sit or drive. It started out small & now it's full-on (also urgency). The pain feels like it's in my private area & just won't quit. It does feel less painful when I stand. Has anyone experienced that? I have my first cystoscopy tomorrow & there's no anesthesia, they do it in the office with a topical cream. Will they be able to tell :shake: if it's IC ust by that- or is it supposed to be under anesthesia? Thanks so much, I'm scared & have been crying alot.

[dyno]

Hi Rebecca,
It sounds like you are going through a tough time right now. It is good you will be finding out some answers tomorrow. The in office cystos give the Dr. a chance to see what the inside of you bladder looks like. It will maybe show inflammation. Usually diagnosis of IC is done during a cysto with hydrodistention so that they can really stretch out the bladder walls to get a better picture.

As far as the in office cysto goes, the more you can relax the easier it will be. It is understandable to be scared and we have all been there. Take a deep breath and know that we all care here. Let us know how things go, hang in there. :grouphug: :kissing:

[Cricketmk3]

I don't know what it is about sitting in a car but when I'm in a flare, that's when I hurt the worse!

[Sarojini]

Good luck on your office cysto -- many urologists like to do those first, just to make sure there isn't anything really obvious going on in the bladder (polyps, tumors, etc). Then, if nothing's really found, the uro may then proceed to the cystoscopy with hydrodistention, which is done under anesthesia. This is the "gold standard" for diagnosing IC.

I know it's scary, but you'll do fine :grouphug: We're all here for you!!

Oh, and just like the others, my IC always acts up in the car too! This seems to be pretty characteristic of the disease. Most patients complain that their symptoms worsen in cars... it's likely the vibrations irritating the bladder, but no one really knows for sure.

[XoChelsey03Xo]

I hope that your dr. appt. goes well. I didn't have that, my uro went straight to the cysto with the hydro. I'm not sure though about the car rides. My IC doesn't seem to be a problem in the car. Really I just try to not think about my IC and go on with everyday life. However, I understand those days when you just can't get out of bed. I've had many of those days. I hope all your pain goes away. Good luck! Let us know what they find. We'll all be praying for you. :angel: Chelsey

[ad8123]

The in office cysto can be fine if you are not flaring to bad if you are and they are not able to do it they will probebly just order a in hospital hydro distention and cystoscope (that is what happened for me).
I have a tremendouse problem in the care increases my pain and my urgency, I think this is very common. I always take pain meds before long car rides. Good luck with the test and it is normal to cry a lot at first the first couple months that is all I did when I was alone. It does get easier to handle but it takes time. Be really patient with yourself it is hard to be ill and not know why. Also if it is IC, you have to get through the grieving stage so you can accept it and learn to cope. It takes time, give yourself that time. Everyone hear is great, I did not know how I would do it when first diagnosed and now a full year later I am trying some really neat pain stuff (a spinal nerve block) and headed back to work so keep the faith, there is light at the end of the tunnel.

Angela

[Babs RN]

Riding in the car kills me. I think it is because I am in the same seated position too long. I have commuted to all my jobs, so usually I just sucked it up. I prefer to be the passenger though so I can allow myself to take the edge off.

Hugs,
Barb

[Rebecca M]

Thank-you all for your support. I'm going to the cystoscopy in a few hours & I'm nervous. I live alone & far away from my family so I've been having to go through this alone. I had a laparsocopy a couple of weeks ago & I had to get a coworker to wait there & drive me home. Last night I kept waking up having mini-panic attacks. Feeling so scared. I just don't understand what's going on. People's symptoms all sound so different. I just wish someone else could tell me that they have the same symptoms I do. It used to just hurt when I sit. But now it hurts when I lay down too. It feels like I'm stimulated 24-7 but with no relief. Does anyone else feel that? What do you do?

[Cricketmk3]

Yes, there was a time when I could not sit, stand, or lay. I would get on my knees on the floor and lean against the bed or a chair. That did not help the pain but it was the only way I could get off my feet. Have you been diagnosed yet? If not, after your diagnosis, I'm sure you will start some type of treatment and feel better. I've taken Elmiron for over a year now and also take Paxil. My pain is under control for the time being. I used to get so angry at the drs. office when they would tell me they can't see me right away. They would try to make my appts. for a week away. I'd tell them no way, now!

[mayray518]

I know the feeling girl. I was still working when I first got IC and by the time I drove to work I was in such pain. I used to carry a clean coffee can and use it when there were bad traffic jams. It was pure hell so I feel for you. Hope fully you will find a treatment that works.

[SharonA]

:grouphug: being sent to you, Rebecca. How did the cysto go? Are you alright? Remember to get a lot of rest. It sounds like this procedure has caused you a lot of stress. That can cause some symptoms all by itself. It sure does with me. Please let us know how you are doing. :kissing:

[classics]

Yes, driving in a car makes things worse for me. I'm not so sure it's the motion of the car, but rather that I experience some tension when driving. I think tension increases my symptoms as well.

[Rebecca M]

You guys are truly just what I needed. Thank-you for paying attention to my message and showing me such love. The in-office cysto was okay- i asked the nurse for some lidocaine jelly so she obliged. She said she usually only gives it to the men since their canal is longer. My canal may be short but it needs love too I told her. I tried to take your advice and relax. It's so cold in those places & they leave you lying on the table with your legs over the stirrups & your you-know-what exposed for like 15 minutes before they ever come in. But even with that, I tried to relax as much as possible. It was only an in-office cysto so he didn't do the diagnostic cysto W/ hydrodistension. I asked him about it, but he said it was more of a treatment. I wonder how keen on IC this guy is. He said that diagnosing IC was a process of elimination and that he thinks that's probably what I have. He wants to do the silver treatments (A....?) starting in two weeks. Does that work? I went ahead & scheduled those. My boss has been as wonderful as anyone could be. He said I could work from home on the treatment days if I needed to. I also asked the Dr. to write me Elmiron so he did. He gave me a few Lortab for the pain but who knows how long that will last. Anyway, my primary care dr. started me on Neurontin 600mg (somewhat like elavil only no sweet tooth) and Bextra (antiinflammatory) and claritin (antihistamine). So that's what I'm taking. My sister is driving 8 hours tonight to come clean my apt. for me since I'm so out of it. I just want to say that y'all seem to be really nice & it's everything to me to not be alone during this. Oh I forgot to tell you. I had my first CT scan today. I cried when the iodine was injected. It gets warm all over & you feel like you're peeing on yourself & your mouth tastes like rubbing alcohol. It didn't hurt, I just cried because I was scared. Why do I cry so much anymore? I never used to. But in the last month, dealing with IC, I cry everyday. I wish I knew how to write a song because I live in Nashville, TN & this would be the perfect state of mind for a doozie.

[Babs RN]

Rebecca,
I worked at St. Thomas and Centennial in Nashville. In fact, we are selling our house in Clarksville.

Good luck and big hugs.
Barb

[mayray518]

sounds like you have a great support network. very important

[kadi]

Dear Rebecca,
You might want to consider getting a second or third opinion before having the silver nitrate treatments. They are an older treatment & have the reputation of being very painful. There are many other treatments available. I recommend you get a copy of "The Interstitial Cystitis Survival Guide" by Dr. Robert Moldwin (available on this site in the ICN store) & look up any treatments you are considering in the "Patient Handbook" of this site! I found that the more informed I became, the less afraid I was.

And don't worry about crying. I never cried so much my whole life as I did in the first months of IC. Once you find treatments that work & you have some relief from the pain & fatigue, life will be even sweeter than before.

Wishing you better days soon!
Love,

[ad8123]

Hello, Glad the cysto went well. I think your urologist is ok in telling you it is a process of elimination so do not worry about that. I went through the same tests as you so you are not alone in that. Neurontin has been my life saver the past week (just started it) it helps me sleep through the night (first time in two years, ahhh sleep). I cried all the time too when undergoing and first diagnosed, my md said it was normal, I was scared and then I had tomourn a bit for my "healthy life" but as time went on I cried less and less. It has been about a year now and well I just do not cry about the Ic anymore. On occasion my pain gets out of control and I do cry (but no sound) but my pain has not responded well. I have however latley met many people with IC who have very little pain and have no problem with it interfearing in there lives. I was recently warned that most often on line are the people who hurt the most since we are glued to the computer at home instead of out living our lives. I think that is true, cause during my short remission I barely checked the site. Anyway, what you are going through seems normal for IC and you are very lucky to have MD's already giving you meds (it took me a good while to get real medication). Elmiron is a real life saver for many (i hope it is for you) it takes time 3 to 6 months so be patient and I love neurontin! You might try atarx or visteral if the claritin is not helping my allergist insists they work better for IC (I also take allegra when my allergies get bad with my atarax).

Best of luck with the other tests and I hope you get a diagnoses soon!
Angela

[Rebecca M]

I looked up the silver nitrate like Kadi said- looks like it's a dinosaur treatment. It also said it should be done under anesthesia. This dr. has his nurses do it in the office under no anesthesia- 5 treatments within a 14 day period. They didn't mention anything about the pain. Do you think it's possible that they've updated the silver stuff ?
And the Elmiron- it's 100mg three times a day. I read somewhere that the dose for Elmiron is 300 mg TID. What have y'all heard?
Oh yeah- my sister cleaned my apt. this morning and then took me to the grocery store (which was painful as now the pain is there all the time) and brought an IC food list with her & basically filled up the cart.
I had jelly toast not thinking that it was a fruit & I'm in so much pain- does anyone react that way to grape jelly?
Thanks.

[Rebecca M]

Barb- That's awesome that you worked in Centennial- that's where I had my CT scan. I also used to be a drug rep & called on Centennial (not St. Thomas though although I knew people who did). Also, with the IC diet, how do you do it? Did you have a hard time adjusting? where did you start?
Rebecca

[ad8123]

Yes I have trouble with jelly, Itried blue berry (and hated it) so I tried strawberry and can tolerate a small very small amount. There is a pear jelly at the ICN store, haven't tried it though. As far as I know Elmiron is given at 100mg 3x aday (but sensitive patients can start at once a day and work up tp 3, it also helps to freeze it or dump the powder in water and take it that way). I hope you get some relief, I have not been able to do any instilations because I am unable to be catherized (unless I am asleep). The IC diet, yah has it made anyone else fat! Made me a 30 pound heavier version of myself!

[Sarojini]

I take 300 mg Elmiron in the morning and 300 mg at night -- however, most people on it take 100 mg 3 times a day. My urologist, however, swears she has better luck with the higher dose so we are doing that at the moment. The good thing about this regimen is I don't have to schedule in a mid-day dose -- I used to always either forget that one, or not be able to take it on an empty stomach.

[Annie2]

Rebecca,

To my knowledge, silver nitrate treatments have not been updated and are rarely used anymore. You might want to talk to your urologist about this before beginning such treatments. You might also want to consult with another urologist about the use of silver nitrate. It never hurts to get a second opinion & could be very valuable to you in this situation. Please remember it is YOUR decision which IC treatments you wish to try. Read as much as you can about IC and the various treatment options so you can make an informed decision.

As to your question about jellies, no I cannot tolerate most jelly or jam. Not only do they contain irritating fruits, but also they usually contain citric acid which is a BIG no-no for many of us. Reading ingredient labels is a must for those of us who follow the IC diet. I recently tried the new pear jelly available from the ICN Shop. It is very tasty and my bladder tolerates this one quite well.

There are several ways to begin the IC diet. Several of us started by eating only foods in the left-hand (Usually OK) column. Also, keep in mind that items in that column need to be homemade (so you can control every ingredient) or, if you purchase it prepared, that it does not contain any ingredient that is a possible irritant. After following this diet for a couple of weeks or so, most of us discover our bladders calm down considerably since they are no longer being irritated by offensive foods. At this point you can then begin adding items from the middle (May Be OK) column. You do need to remember to add foods ONE ITEM AT A TIME so you can determine whether or not that food is tolerated by your bladder. Our food tolerances are all very different and what may be fine for one of us may be very irritating to someone else. The only way to figure out your own personal triggers and tolerances is to go through this process of adding one new food item at a time and noting your reaction to it. It does take some time but most of us find it is well worth the effort.

Hope you will be feeling better quickly!

Annie

[Lady Tamara]

Hey Rebecca, here's an umbrella to keep you dry from all your tears..im so sorry to hear you are in so much pain, and i am so happy for you that you have found relief and comfort in the kind people here at the net work :) it is so wonderful to be able to talk to others who can relate. I really hope you are ok. it is good to hear your sister drove out to be with you. it is so important to be with others at this time. :) *HUGZ*. also i can relate to the pain you feel sitting and in your car. when iw as working some days it was too painful for me to sit on the car seat, i had to sit on a cushion, also i cannot sit on anything wooden as it gives me worse pain, in my vulva area, the urethra is so sore and the clitoris.. Cushions on any hard chairs, is also a must. otherwise it flares up my urinary symptoms. Also, my counsellor tells me it is ok to cry everyday...because you are dealing with so much and its an expression of the emotional upheaval...i hope you are ok
many blessings your way
luv Tamara

[dancemomof2]

This is a touch thing to deal with, when I drive and even whe nI drive I have to take my left left and prop it up under my other leg to get all the pressure from pushing down on my bladder and it pushing on everything else. I'm sorry to hear you have this trouble, I sure know it stinks.

[ad8123]

Hey Tamara, I never thought about the crying that way. I wish I could cry tonight but I am just too tired. Ic is annoying!

[Ginny]

I second that on getting more opinions before doing silver nitrate. I have not heard of them doing them in a very long time.

Ginny

[M.C.]

I also have pain when sitting down. The only thing I can do when the pain hits is walk. I wondered if anyone else was like this, but haven't been online to ask so now feel that I'm not totally alone in this. Some attacks would last 4, 5 or 6 hours & the only place I could get off my feet was on the toilet, but the pain afterwards would be worse, so didn't try sitting there too often. My husband is really great, but can't do anything except ask me what I ate that I shouldn't have? When I'm in pain, that's the last thing I want to hear so could just scream at him, but don't (at least not out loud). Glad you're finding the site a place for info and to vent. Hope you're soon feeling better.