Not sure where to go from here

[Mothergoose]

I have IC, VV, IBS from the muscle in the bowel not working right, and severe urinary retention.

I have lots of allergies and react to lots of meds in ways not expected too.

I spent years being bounced around by Dr's not being able to diagnose me as I never fit in one diagnoses nicely.

I would be told I for sure had IC, only then to be told no it's not IC your bladder volume is too much.

It turns out I have IC, but from years of retention from the muscle in my bladder not functioning right, my bladder is streached way out, I can pee more than 26 oz at one time, and due to loss of sensation in my bladder I don't even really feel like I have to go.

From IC I always have the sensation that I need to go but I can never empty my bladder, and if I do by some chance get my bladder to empty it will spasam like mad as it is not used to being empty a state it does not like at all.

The retention has been progressivly getting worse, a couple of weeks ago I was in full retention and had to go to the ER. Then I seemed to retain every third day for 24 hours, then again this week I was right on the verge of being in full retention.

Vaginal Valium take 2x's per day will help, but then it returns.

My Dr's has decided I should have the retention reasset, I have my 3rd uit in a little over a month, from bladder not emptying.

Great timing as my uro had to close his practise due to health reasons.

So I am now tring to find a uro who knows and treats IC and retention.

I feel I have my IC for the most part under control although one does effect the other.

Just to add another kick in the works I have a very low immunity, so I get infections more easily than other's and can fight them off either.

Because of this my Dr. is very reluctant to let me self cath as my chances of infection is just too great, and the infection take their toll over time, especially once it spreads to my kidneys too.

I live a 3 1/2 drive to the nearest place with a uro, I drove to this place this week and after 2 hours of driving I was in a full blown flare, both ways.

If I am not driving it is not quite so bad but I can take more meds to prevent a flare.

Now a uro wants to see me in about 10 days, I called his office before having my refferal sent to him and was told it was a 6 months wait to see him, but that he does see people based on priority need, so I was surprised when I got in to see him in 2 weeks.

So I guess he agrees with my Dr. something needs to be done.

My problem is he is an 8 hour drive away, and my husband can't take me, he will be working.

The other thing is my son has been away for 11 months I have missed him terribly, he gets home the day before, I don't want to say hello god bye.

A begger can't be choosy I just don't know how I am going to get to one city 6 hours away, drive there pick up my son drive back the next day, and then drive 8 hours the next day.

I guess I will just have to figure it out.

Just needing to write about my delema.

My Dr. says I need to go to this uro appointment.

MG

[greeneyes]

MG so sorry to hear your hurting in more ways than one. Is it possible to pick your son up and stay overnight where your appointment is?

[bubbe1]

MG,
I'm so sorry that you're having to struggle so much just to see a doctor.
I was going to say the same thing that Green Eyes said, could you pick your son up and stay over? Or, could your DH take a day off to either pick up your son or drive you to the doctor? Or maybe a friend or another relative could help out? Is there any other way to get to the place where the doctor is, like a train, maybe?
I wonder if the URO you are going to see knows of someone closer that might be able to schedule you in a reasonable amount of time.
I wish I had some brilliant idea to share, but alas, my brain has pretty much stopped working in protest to lack of sleep! However, I'm sure lots more people will be posting with helpful suggestions. I just wanted to offer my support.
Keep writing and update us.
Laurie

[Linda May]

I am so sorry that you have such a tremendous amount to deal with.
You come to the right place for support are you on the IC diet? Hopefully your new Uro will have a good treatment plan for you. I wish you the best and let us know how things work out for you.:grouphug:

[healingthoughts]

Mothergoose,

I am sorry you are going through all this.
When I read your post, it struck me that your symptoms sound a lot like mine.
I have a large bladder capacity and suffer from retention too.
I do feel that my bladder muscles don't work properly, that is the reason I retain a lot.
My frequency is not too bad (almost normal) and my pain gets a lot worse after urination. I guess this is due to spasms. My bladder likes to have some urine in it, I guess that is the reason why it never completely empties. I feel that, with an completely empty bladder, my pain and spasms would increase.
What treatments have worked for you, besides the vaginal valium? I am currently trying that, but not sure it is helping.

Hope you find some answers real soon.

Hugs

[ICNDonna]

I was just going to suggest an overnight stay. Is there any kind of public transportation you can use? I hope you can find a solution so you can see your doctor and still get to spend time with your son.

:grouphug:
Donna

[Mothergoose]

Part of my problem is I pick my son up in one City going east and south of where I live, I will go the day before at least maybe 2 days before.

We can't stay the night the day I pick him up as he has to be at work the next am. Iam sure he would love to drive back but he is starting his day at 2am to drive 2 hours to the airport, 2 hour wait at the airport, a 1 hr flight an hour layover, flys out of Frankfurt Germany for I think an 11 hour flight, and then arrives in Western Canada in the am the next day. I know from traveling myself that even if he sleeps on the plane he willhave jet lag and will be tired. He has not driven in a year as he was not allowed todrive while away.

If it was not for this I would give him my car let him drive home and I would fly to the City where my uro is, which is a 8 hr drive from my home and about a 12 hour from the city I have to pick my son up in.

My husband dosen't have the type of job he can take a day off, if he does nobody else can work, and they are already racing against time. I am hoping the job is just done by then and then none of this will be a problem, he will just drive.

My friends either work and can't take the time off or have small children and and 8 hour drive each way is too much to ask them to do.

If I had more time I could go by train, but it only goes certian days of the week, and it won't work out.

There also is a medical bus I could go on but samething the timing won't work.

I have lots of faith and figure most thing work themselves out, and this will too or I will have to change my uro app, for a later date so I can use another form of transportation.

At any rate I always stay over night if I have to travel very far, my bladder doesn't like to travel so the overnight is a must for me to cope, so that is already in place, what ever the plans end up being.

healingthoughts: I do not have any other suggestions for the retention, I tried flowmax, it caused my retention to get much worse, I tried another med in the same class and I am really allergic to them now, so that's out.

thanks for all of the suggestions MG

PS someone asked if I follow the IC diet, I follow it to the T, I do not cheat as it is not worht it, I feel the diet, is the best thing I have done for IC.. My old uro said in his expirence the people who do the best with IC over the long haul no matter what else they do, do best if they follow the diet.

Also where I live they have a real shortage of uro especially one who know anything about IC, this is the closest one.

Thanks again for your imput

[tigger_gal]

oh my goodness MG, I am at a loss for words for you. I do wish I lived closer to you to help. can you imagine the experience the both of us and my kids LOL. sending big hugs to you.

[Mothergoose]

Thanks, yes if we lived closer together, at least it would be easier to comiserate together.

As I said before it will all work out or I will make it all work out.

What I didn't put in my other post, was my dr feels I do need to see a uro for reassement of retention problems. So he sent out about 5 refferals to see who felt they could help my case and who could see me the soonest.

Another uro about 5 hours drive away, agian in a different direction, wants me to have 2 hand held bladder ultrasound tests a week a pert to see how much residual urine is in my bladder after voiding, I think he is going to use these results to see how soon I need to be seen. This is a 5 min test, each one, I can go anywhere they have one of these machines.

I am waiting to hear if a hospital just over 2 hours drive away, can and will do this test. If not it will be at least a 3 hour drive each way.

To boot this closest hospital, is not on the way to either city I have to go to next week.

I know this sound strange but I live in the mountains, where 3 mountain ranges meet, so when I go any where you are always having to go where these mountain ranges will let you go, or go around them, not many roads as well.

I am hopping the hospital 2 hrs away will do it, as I can easily drive there and back, plus they have good grocery stores and someone is always up for the ride there to do a bit of shopping.

I will keep you posted.

One week and 12 hrs till mt baby is home, can't wait.


have a good day MG

[leelee88]

Sorry you are going through this..
I to suffered from severe retention.. I know this sounds crazy but I have high blood pressure and my dr put me on a diuretic. And to my surprise it helps with the retention..I still have some trouble emptying my bladder but it is not near as bad as it was before I started taking the diuretic..I do hope you find something that helps.. hugs

[Mothergoose]

I am feeling better about the whole issue today.

I have been on Ab's all week from a UTI from the retention, I was feeling pretty good by Friday afternoon, I had started them the previous Sat.

I saw my Dr. on the Friday afternoon for a mole removal from my lady bits, uncomfortable but not too bad, he had warned me it would be quite painful, but compared to the pain I live with it was nothing. I ended up quite swollen and bruised, ans stitches are a bit itchy.

Aways by Friday night I didn't feel well and figured I was just over tired and went to bed early. I woke Sat am with a Temp, burning to pee, hard time to pee, ab pain and kidney pain. I had blood in my urine, and big pieces of tissue. I was the same on Sunday.

My dilemma was, did my infection spread to my kidneys which does happen to me lots, or a flare from the poking, pulling, and cutting of my lady bits.

Sunday eve my husband wanted to take his dad out for father's day dinner and to church so I thought I will get up and go maybe getting up and dressed I would feel better.

Well to say the least I didn't feel any better worse infact, so I go my husband to bring me home before church.

On the way home we talked about next week and all the driving I have to do. first he said he might be done his job by then so could drive. (yeah) I asked if he could take a day off to at least go pick our son up he said he didn't know, he hates to commit and let anyone down, then I said well I figured I was going to have to drive and he said obviously you are too sick to drive this far, if you can't drive home from town.

So at least he recognizes my limitations, so something will work out.

I am leaning to wards postponing the uro app for a few weeks, I know this sounds silly but I feel too sick to travel that far to go see him right now, and if I have an infection will he get any real results from tests anyways. Also I just know if he does an in office Cysto to have a look at my bladder it will send me into a big time flare, I just can't face it right now after fighting one thing after another for the last 5 weeks.

thank you for all the support

As for being sick or worse I have put in a call to my Dr. and am expecting a call from him anytime now, he is really good at calling me when I ask him too.

I have not tried diuretics, I will ask about that at my next Dr's app. I don't think he will Rx it for me as I already have low blood pressure and have to make sure I eat salt everyday to try to keep it up high enough for me not to be dizzy.

thanks MG

[Mothergoose]

I spoke to my Dr. yesterday and he asked me to come in for blood work today and then wait for the results.

He thinks I may have got the flu on top of the UTI, hence the blood work.

I am not so sure it was a flu, I came very close to having to go to the ER last night, I was in a bad way with pressure and not being able to pee.

I decided to try to wait the night, which I did, and I went some this am, so i am a bit better, but I can see I did not go enought to empty. I am recording in and outs.

Thanks MG

[Mothergoose]

I went to y Dr. today I have had a uti, I got a lot sicker with it over the weekend.

I spoke to my Dr, yesterday and he asked me to come in and have some blood work done today, he felt I had caught a stomach bug on top of the uti.

I was yea that could be true but why is my retention getting so much worse? He said come in and we will do the blood/urine tests and see what they show.

So I went in and had them, I had not been able to pee since about 2pm yesterday.

The blood tests showed my sodium was low, probably from the flu, but he felt a intravenous would correct this and make me feel better.

He then wanted to feel my belly, I was retaining so much I could barely stand to have him touch me, I was in full retention again.

So off to the ER for me, first they couldn't get the IV line in, I don't have good veins, or so they say. Then some pain meds, and meds to help relax my bladder to see if I could go. After an hour and a half I finally said I wanted to be cathed. I also asked this time to drain as much as they could, they were quite surprised when they got 54 oz out. Not a surprise to me. After they decided no more was going to come out I said I would try to go pee before I left and since I am supposed to be recording my In's and outs for a week, I wanted a hat to pee in. I quite easily peed another 10 Oz's.

So I don't think he knows what to do now, just wait till I get into a new uro, I guess.

But not a fun day for me.



MG

[bubbe1]

Oh my goodness, MG. You certinaly have been through it.
I hope tomorrow will be better and that you can get some answers.
Hugs,
Laurie

[Mothergoose]

Thank you Laurie I need that hug right about now.

I just feel I am missing out on so much lately, I always miss out on lots but I don't ussally care but it is getting at me lately.

Oh well chin up I will preserve.

Thanks for the replies MG

[Mothergoose]

Well the time is nearing and I still don't have any answers.

My son said today he actually now doesn't start work till the 4th of July so I am now trying to see if I can get his flight changed to the city my uro is in so I can go pick him up and see the uro at the same time and make one trip.

My husband has decided I am too sick to make these trips alone, which I am.

After speaking to my Dr. yesterday he does not want me to put off the uro app.

I had tentatively decided to try putting it off for a week or 2.

but here I sit with a million things to do and no phone call to say if they can change flights.

Oh well patients. It will all work out.

MG

[KathiB]

MG - reading your story, first of all I feel so badly for you. I hope you were able to get to the URO and get your son. Post an update so we know you made it through.

Second, I've seen a few of your other posts, and I feel like we could be twins! I have such severe retention issues - often times I can't walk it hurts too much because my bladder is so full. I can't ride in my husband's truck, I can't go in the boat anymore since the bouncing hurts too bad. I get UTI's, not quite as often as you, but one every couple of months. My low back pain is horrendous, plus I have bowel and pelvic pain issues on top of it all. Just wanted to say "hello!" and tell you that I feel your pain, and I hope you are getting through it all ok.

[Mothergoose]

Update

It has been a whirl wind here, things should slow down now.

We ended up changing my son's plane ticket to fly him into the city the uro was in.

I went into complete retention for a second time in 2 1/2 weeks, after this my Dr. was pretty adamant that I really needed to go see this new Uro. Also my husband finally got it that I was not capable of driving by myself to the uro app when he had to bring me home from a dinner out, I sat through dinner and did not eat and then we were to go to church. I just could not sit through it, I was in lots of pain, could not pee very well and I was exhausted from getting up so many times Trying to pee at night.

He went to church because we had taking his father to dinner and church so he needed to go back and be with him, I was very okay with this I just wanted to crawl in bed with my heating pad. I was asleep before he got home.

So my son flew in at noon, my Mom and a niece went to the airport and met him, I cried not to be there, but my husband had to work that day he just couldn't get out of it. When he got home from work at PM we left to make the 8 hour drive to the city. I was really uncomfortable, I had pillows, blanket, heating pad, books, Ipod, snatches, meds of all sorts. I stayed a wake because my husband was really tired we had got up at 5 am that day, I could have slept but I was afraid of him falling asleep. We arrived at 2 am, I immediately went into my son's room, he's the baby of my children and I had not seen him in 11 Mons. I hung on to him and cried my eyes out.

I sent away a boy and got a young man back, he had gone on a student exchange, I missed him so much, but it was really good for him. He was sick as a child and spent many years housebound, so I had wondered if I would ever see the day that he could function in the world. He's healthy, has gained lbs of muscle, he joined a gym and worked out to build muscle mass, he went to school, worked on a farm, lived with a family with 7 kids ages 2 to 19. He learned a second language and is fluent in it. It was a win win all the way around, he traveled a bit in Europe and saw some different ways of life.

The next day we hung out and my Mom went home to her home, it was nice to see her even for only a day.

The next am my husband and I went to see the uro. I am not too sure what I think about him, he has a bit of an abrupt manor, bit I think hopefully he may know his stuff. He did an in office cyst, but it was not painful at all, he said he didn't know if I had IC or not as he didn't inflate my bladder enough to see IC, but that it is very large and flabby, it holds a very lg volume of urine and it apparently doesn't work to empty. He asked me why it didn't empty I thought he would tell me, not me tell him.

He asked and answered his questions before I had a chance to answer him. He kept asking me if I had MS, I have had this ruled out, he must have asked me 3 X's if I had Fibro, or Lupus and didn't seem to happy when I said I did not, he said but you hurt all over I said no just my pelvic and lower back.

He finally decided that he didn't have enough information so he got me to sign release forms so he could get info from past uros. He asked me to get my records from my GP, anything that pertains to my bladder. My GP has already done this he faxed him 25 pages of reports and test result for the last 8 years, my history goes back much further than that but it was about then that they realized I had voiding problems as well and most other IC symptoms.

I am to go back to see this uro again in Sept after he has had a chance to review my records and he will have plan of treatment by then. I am sure he is leaning to wards self intermittently cathing.

But go figure after the second episode of total retention, my retention issues have improved a bit, so I am not as uncomfortable as I was for quite a while.

But of course with this condition you can't have it all, my bladder as far as IC symptoms have been pretty good for a while, no burning, or pinching upon voiding, no urgency, I would not say a total remission but IC symptoms were better than they have been in a long time. I had quite a flare from Trying a medication a few weeks ago, but it did clear up in a few days, but now it is back. It is not like a flare it is more like when I just had constant symptoms.

I follow the diet really closely and attribute my bladder being pretty good from the diet. I have racked my brain, I didn't eat anything I shouldn't have, but as I said I guess you just can't have it all at the same time.

Anyways after I was done at the uros we picked up out son and headed home, it had rained so much that there had been a slide on the road and a 8 hour drive became a 13 hour drive, it took us 5 hours to go about 60 miles. I had to pee so bad I had to climb into the bushes that were soaking wet from the rain, and pee. I could not wait any longer. If I have to wai to pee, then when I can go I can't go, so I had no choice I had to go in the bushes.

Oh well it was not the first time and I m quite sure it won't be my last time.

My older son had taken a couple of days off work so he was at our home when we got home at 2 am in the morning, he missed his brother too, so between the 2 of them being home it was a steady stream of people through the house for a while.

Then a boy who I consider mine as he spent more than half of his life at our house, our youngest sons best friend, they have been close since being babies. He had been traveling since last Nov. he showed up to surprise us on Sunday night, it was great I really missed him too. He is part of the family, he has always just came and went as he pleased, eats what ever he wants, our home was truly his home too.

My older son went home on the Sunday night, and the younger son started one of his 2 jobs the next day.

Then of course no matter how many times I told him to sort out his course's for University in the fall, he of course left it for the night before, this was Monday evening, he then had to be ready for registering at 7:45 am Tuesday am, he pulled it all together and got into all the courses he wanted, and then headed off to work.

So I am hoping things will settle down for a bit. I enjoy all the activity and company, but maybe that is why my bladder is unhappy now. It like things to be a bit quieter, and for me to be able to rest when I need too.

anyways I guess I will let you know what happens with this uro in Sept.

MG

[OllieR]

Hey, just read this post MG! What a story, but yes it sounds familiar to what I have going on! I too have to travel for my Uro, but only half what you travelled - I cannot imagine going that far! I'm guessing you live in Canada? I don't know about there, but when I travel there are things to look into. Since it's near a hospital, some hotels offer discounts to people staying for medical treatments. Since my parents are so amazing, they book us a hotel room for a night or two. But I've been told there are charity places where you can stay for free or very little too.

Definitely keep us posted. I have severe retention as well and am able to go on my own sometimes but cath other times. I hate it soooo much!!! So if you find any answers I would love to hear them of course. However, my doctor thinks my retention comes from PFD and the inability for my muscles to relax anymore because I'm always in so much pain :/. I say, then do something to take away my pain because I'm tired of it anyways lol! I hope something works out for all of us. IC is miserable enough without retention.

PS - Reading your posts are very encouraging. I like to see how you just try to work everything out that you need to, even though I was thinking all that driving (even as a passenger) would be so horrible if I was in your shoes! So I give you lots of kudos for figuring all of that out and staying committed to the doctor even though it's such a hassle to see him. A catch 22 I guess! God bless, MG, hoping your flare is feeling better.

[Mothergoose]

Thanks for the reply it is always encouraging to hear from someone in the same boat.

I am lucky in that most Cities I have to travel too, I have family to stay with, this helps a lot, we ussally stay a day or too as my husband knows how hard the traveling is on me. This time just was circumstances. He had to work that one last day, the job was ending it was a contract and the whole thing would have had to wait for my husband to get back to be completed, so he really didn't feel he could leave them in the larch or we would have gone down during the day and probably on the weekend so we were there when or son arrived.

Then our son who had been away for 11 months had to get home as he had 2 jobs to start to earn money for University, as he did not earn any money while away, but did earn experience.

Our other son who lives 3 hours away had taken days off work to be at our home when his brother got back. It was really nice they got to spend 4 days together. there is a big age gap between them but they have always been really close, nothing the older one would not do for the younger one, they live together for a while when the younger one was in high school, so he could get all the courses he needed.

When we go to my next app we will probably make it a bit of a holiday, see my brothers, and maybe go over to where my Mom lives or she will come to my brothers at the sometime.

I planned this app for the same time my youngest has to move to the city to go to University, so it will be nice to stay a few days and see he gets started off right. Although he is very mature for his age and he will have no problems I am sure. Also my brother lives a few miles from the University and have told him he is invited to Sunday night dinner every week, and to bring his laundry to do while he is there. They also said he can come for dinner any other time he wants too, can use their car if he needs too, and can just come over to their house even if they are at work, if he wants some downtime or a quite place to study. I couldn't ask for anything more. both of their kids are away at Universities else where.

As I said in the end I have faith everything will all work out, although my husband can be frustrating at times as he will never make plans in advance. He lives by the day, but we have lived this way for 30 years so we make it work and now with IC I have to live more and more by the day.

Have a good weekend MG

[bubbe1]

Mg,
I'm so glad to hear that things are starting to work out for you.
Also, how excellent that your son will have a place to go to on weekends for TLC and laundry!
Feel well and have a great weekend.
Laurie

[Mothergoose]

Thanks