Severe Incontinence!!

[RAS6]

HI, need some help from you ladies who have been through this!! I just finished up my first year working full time in a school and loved it, but unfortunately my IC symptoms have gotten bad. I am seeing my Doc on the 7th of July. In the mean time, I have been experiencing SEVERE incontinence and am not sure what to do. I am worried it could be a sign of infection or that my IC is getting worse!! I have had incontinence on and off since I was diagnosed. I would say it was very mild, I would change two to three pantyliners a day. I usually "leaked" and only when I held my urine too long, sneezed alot, or had coughing fits. The past few months the urine loss was heavier. I had to buy the next step up in Poise pads and change them 6-8 times a day. Now I am soaking those. I am using moderate to heavy pads and changing them 6-8 times a day. I will look down to just see I am sitting in a puddle of urine. No rhyme or reason to it at all. I can't get in earlier b/c my doc is out on vacation and his NP is too.
Just wondered if there were any possible thoughts as to why this may be happening or suggestions on how to cope. I have been on several OAB meds, none really did anything except give me mouth sores!
Thanks ladies!!
Sorry i haven't posted in so long, work and my kids take up most of my time lately....
:)

[ICNDonna]

Be sure to talk with your doctor about your incontinence. It's very possible it's a medication causing it --- if that's it, he/she should be able to tell you which one/s and make any changes needed. I know it's frustrating. I had a bad stress incontinence problem and finally gave up and had a surgical procedure to correct the problem.

Donna

[willow2389]

i had sling surgery 2 months ago and my stress inconince is worse then before the surgery the uro said he is going to try collagen injections and if they dont work then will talk about a sling revission has anyone heard of these collagen injections do they help and does it hurt he said it is done in
a outpatient setting.

[ICNDonna]

The surgery I had for incontinence was several years before my sling surgery --- it was a Raz procedure.

Donna

[TexasHoney]

I'm sorry you are having such a rough time.You really should see your doctor ASAP. I hope you find some answers.

Take Care

[RAS6]

Thanks ladies. I did get ahold of my Doctor's office (my IC specialist) Both the doc I see and his NP are on vacation, so the on-call doc just said to "hang in there" until my appointment on Tuesday. They offered to have me take a UTI test in the meant time, but the office is an hour and a half away. So I am just waiting until my appointment next week. If everything checks out fine I am considering interstim. I am not feeling rushed, I have done LOTS of research, tried MANY MANY options, and have been diagnosed over 2 years now. Again, if they can't explain the increased incontinence I think the time is right. I am desperate to get my quality of life back. I have new insurance that started this month, that has no pre-existing condition clause, and that covers 100% of surgical costs unlike my last incurance. So that's where I am at now. Again, I am not rushing into this, have considered it for a very long time. Hopefully though it is just a UTI and that will be the end of it!
Thanks again!

[SandraCT]

Hi

I have what is called Mixed Incontinence. I have the stress kind where like you, I have been leaking and also I gush urine if I have a bad cough. It's so bad that I have to sit on the toilet while I cough. But I also have what is called a Neurogenic type of overactive bladder and this is what causes my leakage. I guess it's because my censory nerves are not signaling my bladder properly so sometimes I have the urge to go all the time when I really don't have to, but other times my bladder is so full and I don't feel the urge and then I leak from the overflow. I also have a weak valve. I do not leak as much as you are. One pantyliner a day works for me but I have the feeling that I'm constantly leaking and I feel like my bladder is hanging on the ground. I know how frustrating this must be for you as I cannot stand the leaking. You may have to have a Urodynamics study done (if you have not already) to determine the type of incontinence you have. Maybe you have a prolapsed bladder too. There can be several things including medications, causing your problem. I am on Flomax for retention and now I'm peeing like 20 times a day. It's really a nasty vicious cycle for us. Let us know how you make out after your appt. My current Uro put me on meds and said I could opt for surgery for that sling but it may make my neurogenic bladder worse and cause severe retention and then I'd need the Interstim. I am now going for a 2nd opinion as I am not happy with him. I hope this helps. Sandy

[RAS6]

Thanks Sandy! I PMed you back BTW.
I had Urodynamics back in '06 when I was first diagnosed, but no one ever talked to me about what they revealed except to say i had a "small bladder capacity". I have had several ultrasounds and CT scans and no on has ever mentioned my bladder hanging or any other issues. Until my last Hydrodistention under general anesthsia I was told my bladder looked "great and healthy". The last surgery revealed I now have small hunner's ulcers. When I tried OAB meds I had mouth soares and retention. I normally have almost constant Urgency and frequency sometimes up to every 15 minutes on a very bad day. Then the unexpected incontinence has begun now too. Hopefully they will have answers for me! I am really frustrated!
Good luck if you get that second opinion. I ended up getting a second and a third and am very happy I kept looking for options and answers.
Have a great 4th!

[SandraCT]

You know, it really aggravates me that some doctors do not thouroughly go over the test results with you. For example, I had an abdominal CT-Scan in 2006 for kidney problems and when I went back to my Uro, he said, Oh you have 2 kidney stones and pretty much wanted to rush me out of his office after that. I then said to him, "What else did the test show?" He said, ok, I'll read you the results. Well thank goodness I asked him because I then found out that I have cysts on my kidneys (which he said was normal and common), an Umbilical Hernia (which I would have never known about), inflammed lymph nodes in my groin (but he didn't know why), and some other minor things. I was so upset knowing that if I hadn't asked, he would never had shared this with me. I don't know why I have stuck with him either. But I am glad to be seeing someone new soon. I also thank goodness for this website as I have learned so much and therefore, when the doctors talk to you, I can understand a lot of what they are saying. If I didn't research many of these things, I'd have NO clue as many people do not and then they leave the office totally confused, especially elderly people like my parents. I have had many of the tests you mentioned and I was never told until my recent Uro dynamics that my bladder was a mess. Ultrasounds and CT-Scan were normal. My doctor never saw the ulcers when he did my biopsy in the hospital but he said my bladder was very inflamed and I was sent home with a catheter for a week and given no antibiotic so I caught an infection. Unfortunately I have learned that we have to be our own advocates and that it's important not to stay with a doctor that does not help you or thinks it's in your head. Although your Uro dynamics test was pretty normal (except for your bladder size) back in 2006, it may be time to do another one, as things may have changed for you. My Uro also did this test where you have a catheter in you and they take X-Rays of the bladder. This is probably the test that showed my neurogenic type of overactive bladder. I know there is a name for this test (if you haven't had it) but I can't remember. You can google it online to find it. Did you have this done? I feel for you. I have retention, leakage, urgency, frequency, and burning. When I have a BM, I burn and then pee a lot. It's all a mess right now. I hope you get good results from your doctor visit and they can find out what's causing your incontinence. I also believe I have severe PFD which can cause leaking and difficult urination and other symptoms. Please let me know how you make out. Best wishes,
Sandy

[dhoffer]

Hi, I read the posts and feel your frustration.

I have been having problems with leakage for years. my uro has done numerous tests and I have had two different sling surgeries. the only link I seem to be able to find is that the leakage gets worse mid cycle of my period. Right after I have my period each month I will have a couple days where I wont leak as much then about the 15th day of the cycle the leakage starts to get heavier. I will end up wearing 2 or 3 poise pads at a time and will wet them. the uro says there is nothing wrong with my bladder and he has no idea why I am leaking. he told me to talk to my gyno. I did that and she said he has probably done every test she would do so she has no answers for me. I cried when I left the gyno office. Its hard to work when your in the bathroom changing wet pads all day.

if anyone has any ideas for me I will be grateful. I have no idea what to do anymore.
thanks for listening
Dawn

[IC SARAH-CPP]

I have it BAD too. I am so scared about it. So very scared. I mean I lose the entire contents of my bladder 3-4 times a day, every single day. And I have NO warning and I mean no warning at all. It is like one second I am fine and the next I had peed my entire pants. I am sure you can imagine how horrid it is to work and be out in public when you pee your pants several times everyday. I have worn the diapers too but even those dont hold my urine in.

And it HURTS so very badly when it happens. I cry out from the pain too. I cant remember who on here was saying that we can have infections and the docs test for it but it comes up negative b/c the infection is there but it is still low but our bladders are so sensitive we feel it early? I think that is what happens with me b/c I get tested and they say no and then it get worse and worse and finally the infection shows up but I have been suffering for weeks.

Sarah

[SandraCT]

Wow...it seems like all of us have leakage problems. I don't get a large amount of it on my pad but it's strange because I'm having retention issues too so after I urinate (and not much comes out) and then I stand or sit, I can feel this blurp (like a bubble popping) and then I feel the urine. It's hard to explain but it also feels like my bladder and vagina are hanging on the ground. I know this sounds gross but I have to put toilet paper inside me because I can't stand the constant wet feeling in there. I think because mine is right at the tip and doesn't seem to come out much on the pad. But I'm definitely leaking. It sounds like some of you have a prolapsed bladder and also stress incontinence or some type of incontinence. I think I have damaged the pelvic floor muscles and I was told I have a weak valve??? I'm still in limbo with this myself. My current Uro suggested that surgery (sling) but I'm so afraid it will make my problem worse as he mentioned that it may solve the stress incontinence but it may make my retention (coming from neurogenic overactive bladder) worse. I cannot bear to have something worse happen from the surgery. And he said if that happens, I'd then need the interstim. I feel your frustrations. I hope we all can find out what is causing our incontinence and what can be done so that we will all feel better soon.
Sandy

[krisillis]

This may sound crazy but have you tried tackling the problem with physio? I have incontinence too and I just started seeing a physiotherapist and she thinks she can really help me with my pain and incontinence. If you'd like I can be the guinea pig for the next few weeks and let you know how it goes.

Christine

[SandraCT]

Hi Can you tell me exactly what a physiotherapist does? I live in CT and I've looked online and don't see many physical therapists or physiotherapists who specialize in this in my area. Maybe when I see my new Uro she could suggest someone that is not so far away. I know a lot of woman have tried the physical therapy. Please do let us know how your upcoming sessions go.

Best of luck,
Sandy

[krisillis]

Mine's pretty good. She's been in the biz for 20 years and has specialized in pelvic floor therapy for 10 years. When I first saw her she spent the whole hour assessing me. She interviewed me about my entire health history. She explained to me how the pain system works and how in many case like ours Its like an alarm system in a house that is constantly turned on and malfunctioning and telling us things we don't need to know. Like instead of going off when an intruder breaks in it goes off when an ant crosses the floor. Because of this my pelvic floor is constantly tense and it is so tense it can't relax and then the muscles spasm when I sneeze or cough or walk or stand. So she hooked me up to a bio feed back machine to see how much pain I was in and is teaching me some really simple exercises to control those muscles. Because when I learn how to control them I can learn how to relax them. And when I learn how to relax them. I can get them in a place where I won't be so tense I can restore my control. I went for my second appointment today. I saw her 1 month ago and after 1 month of doing her exercises she could already see a difference in my muscle tone. My experiences with her have been really positive. So if you want to give it a try make sure that you get your Dr. to recommend someone who specializes in pelvic floor therapy. Let me know if you have anymore questions.

Christine

[RAS6]

Thanks everyone who posted. I wish I could answer everyone's ?'s but I don't have answers for you. I am sorry so many of you are suffering too. This is really rough, especially during the summer. I feel like I always smell and am always wet. I am now carrying an "emergency bag" with extra pads and pants/shorts everywhere I go. It gives me some peace of mind.

I saw my Uro's NP yesterday. I brought up interstim, but she is advising me to wait a bit longer and I trust her judgement 100%. I am now on a higher dose of Cymbalta (she says it has been approved for incontinence), and taking Vesicare, 5 mgs a day. I am also on a higher dose of Neurontin for pain, gradually going up to 2700mgs in a few weeks. They want to help get my pain under control before I have another surgery. I am so thankful I have her and Doctor Mayer. They have been so caring and good to me and ALWAYS give me options which is what keeps me going when things get rough. So far no changes today, but I had a stressful day so that may be a factor. My NP also gave me info on local disability advocacy when I shared my concerns that my IC symptoms may interfere with my job as a Teaching Assistant in the fall. THe teacher I worked with last school year was wonderful and understanding, but one TA in our class was very nosy and rude, spreading rumorw that I was preganant, or that I had bulemia!! It was really awful, but thankfully most staff there don't believe her. Still I am worried that voiding every 20-30 minuets may cause issues at work especially if I am placed with a different teacher. My student moved so I ahve no idea where I will be going inthe fall yet.
Anyways, I am so lucky to have such a great medical team on my side!! It gives me hope and I didn't have much of that my first year after being diagnosed.

As far as physical therapy, it has been recommended, but the only person I can find who understands IC and PFD is a 2 hour drive away(at the same hospital as my Urologist) and the drive is HORRIBLE for me. I tried to find someone local and found a woman who researched it and acted like she could help me, but she quickly passed me on to a PT assistant who had me stretching and tightening my pelvic muscles, doing crunches (SO BAD!!!) and riding the exercise bike (which was HORRIBLE TOO!!) He also refused to do TENS on my abdomen and that was the whole point of my going to PT. Also they were pushy, wanting me there 2x's a week and I couldn't afford the the $35 co-pays that often!!

So that's that for now.
Hoping the med changes will help.
Thanks for all your help and compassion. Good luck to those of you who are struggling with this too. You are in my thoughts and prayers.
I am forever grateful for this site and the fabulous people here!!

[krisillis]

Hugs Rachel! I hope the meds work for you. Don't feel bad about the emergency pads or feeling like you smell all the time. You're not alone. I use poise pads and they're great for controlling the odor. I really hope the meds and surgery work for you. If it doesn't an you want to try the physio take the 2 hour trip. Right now I'm travelling and hour to see mine and having to see her every 6 weeks because she's that popular and paying $120 that I can't really afford because I'm at wits end. The one thing she taught me and that was at the first session is that your PHYSIO SHOULD NOT HURT YOU. She only has me doing 2 different exercises twice a day and they are only so I can learn how to control the muscle and if I am in a bad flare and it's causing a spasm I'm not to do it. Really just so you know in the future you can get by on physio every 6 weeks, don't feel pressured because they want to make extra money. I'm glad you're trying something new that you feel will work for you. I have my fingers crossed. I'll sign you up for a new body when I get mine. Hang in there!

Christine

[elitynski]

I've been reading all your experiences and I have some dribbling during the day and it frustrates me but I read about your experiences and I think about how you have all struggled.

My prayer is that you guys will be able to find the help you need so you don't have to struggle with the incontenence issue.

I think that Christine's post about bio-feedback is very encouraging. I'm hoping that this might be helpful to others as well.

I do have to tell you that your perserverance and fortitude inspires me - especially when I've been so down about what I've experienced lately and I read what you are going through and I wish for the strength that you all show.

Thanks for being good examples and my best hopes and wishes for continued improvement.

[RAS6]

Well I have been on the Vesicare almost a week and can't say I am happy. It does help with the incontinence. I still dribble but am not like before. However, my mouth is always dry (I even have the special gum but it doesn't help for very long) my throat is sore constantly, and I am getting sores on the roof of my mouth. On top of that it seems to be doing what every other OAB med I have been on does: it makes it hard for me to void. I still have the same amount of frequency/urgency and now it is even harder than usual to get started. I am not retaining, but it can takes several minutes now to start peeing and it HURTS ALOT!! Also I have to resist the urge to push b/c it makes my PFD much worse. But it is SOOO hard to pee when I need to now!!

So I am in a bad spot. Do I continue the meds that lessen my incontinence yet give me nasty symptoms, or do I go off of it and back to before?? I am going to leave a message for my NP and let her know. Maybe there is another med I can go on instead of Vistaril. I hate these symptoms but don't want to have incontinence that severe again!!