Insight PLEASE

[Little Sunshine]

Hi, I was diagnosed with IC a few weeks back (my story is posted in another thread here). My urologist did a bladder distention a few weeks ago and noted that I had petechial hemorrhages throughout my bladder wall. He diagnosed me with large capacity IC. This past week I visited the Cleveland Clinic in Ohio. It is pretty cutting edge as far as medical treatment goes. I saw a female urologist and she took in all of my information that I had to give her about my IC. After a pelvic exam she told me that there was a good chance that I didn't have IC...that as many as 80% of women are actually misdiagnosed with IC. She said my pelvic floor was hard as a rock and I needed to see a physical therapist to work on relaxing my muscles and they could very well could be putting the pressure on my bladder and causing the frequency/urgency and pain with intercourse that I am having. Obviously I am VERY confused at this rate. Esentially I have gotten two very DIFFERENT diagnoses. I don't understand why my bladder would have hemorrhages on it...or in it...if I don't have IC. The doctor in Cleveland did not look at my bladder as the doctor here at home did. But she did do a two year study in medical school on pelvic floor problems (or something to that degree). I wondered if anyone out there has had a similar scenerio. I am climbing the walls here trying to figure out what the heck I should be doing. Any advice is welcome advice. My urologist here at home gave me the typical meds for IC...the doctor in Cleveland told me to take a warm bath and drink a glass of wine before intercourse...to relax my muscles. Two very different responses. So far, I haven't been doing anything other than following the IC diet and avoiding intercourse....and spending a lot of time in the bathroom. Right now I am working on finding a female urologist here at home. Other than that....

[Engtch29]

Similar problems

Hello,

I just want you to know that I've also been told by Hershey Medical Center that my vaginal muscles are quite tense and that I need PT. I'm going in a few weeks.

I constantly feel the need to "go" and when I do, not as much comes out than what I remember. I've not been diagnosed with IC yet and am very upset as you are.

Where do you live? Did you do anything different before these symptoms? For me, I jet skied and moved into a new home, lifting many heavy boxes.

I'm confused as well. Lately, I've been using a heating pad any chance that I get, on my tush and tummy at bedtime--seems to be helping some.

Here's to feeling normal again..!

[Little Sunshine]

Maria

Hi Maria, I am sorry to hear that you have been feeling frustrated too. It's not a fun feeling to have. Personally, I am terrified for this PT. I have had so much trauma to that area with everything that has been going on....and can't imagine any more. I too have been living on the heating pad. Before all of my symptoms began, I was being treated for a UTI that wasn't going away. Hence, the further testing and diagnoses with IC...and now this pelvic floor thing. In the past few months I haven't done squat for exercise besides walk my wonderful dogs. Before that though, I was a regular at the gym...hoping to prepare to climb a mountian I have been dying to climb out West. I kayak, backpack, hike, run, lift weights. You couldn't stop me, or so I thought This IC thing has put a total damper on my life. If you can believe it, I've lost 17 pounds of muscle. Anyhow, do the doctors suspect you have IC? I certainly hope not. I don't wish this upon anyone. I am sure there will be moments when I feel healthy. But right now it's hard to see that light at the end of the tunnel. Please let me know how your therapy goes. Good luck.

[cmclien]

Hi sunshine,

I think you might have both going on. Uro #1 found real hemorrhages so I'd stick with his meds. But that doesn't mean you don't have pfd too. I think its odd that despite the physical findings of uro #1, that #2 kind of dismissed it. I liked her advice of wine before sex and probably going to PT would greatly help you. I always have a glass of wine before sex just for that reason alone. My DH will be like why do you need to do that? ha ha and I'm always like you have no idea what its like to be the woman! (and I mean this only in the kindest sense). But it takes concentration to relax and a little wine definitely helps. I'm not condoning it for most ICers as it alone will bother their bladder but just thought I'd mention it definitely helps me relax and helps me concentrate on relaxing those muscles and I don't even think I have PFD. Will be asking my gyne this week.

[ICNDonna]

I agree with Cindi --- it's very possible that you have both IC and pelvic floor dysfunction. If that's the case, some physical therapy, along with diet changes and IC meds, could be the thing that makes you feel better.

Warm hugs,
Donna

[earthlady]

Hello LittleSunshine - I had the very same thing happen to me. My uro/gyno tested my pelvic floor and found I was having severe pelvic floor spasms and said she felt this was the cause of my bladder problems. I went to pt for internal myofascial release therapy and all my bladder problems went away for two and a half months, but slowly returned. The IC specialist I saw felt it was IC that was causing the pelvic floor problems- So I treat both. I guess it's the chicken or the egg thing. I have pelvic floor stretches I do every day at home, sit in a warm bath with epsom salts, I put a heating pad under my butt when I'm lying or sitting on the couch, and sometimes take a muscle relaxer or Ativan- this really helps. Also, taking long non jarring walks seem to calm all my muscles down- including my bladder. As if we are not confused enough with all the differing opinions right? I also recently read that some researchers have now found the petechia and pin point bleeding in bladders of people who have absolutely no symptoms of IC at all. You may want to try the pelvic pt and see what happens. I have a great one who deals with nothing but bladder and pelvic floor problems.

[Little Sunshine]

Cindi

I too found it odd that uro number 2, dismissed the findings of uro number 1. It almost makes me want to have someone ELSE look at my bladder and see what's going on. Why would uro number 1 report these findings...if he hadn't actually seen anything? Could it all be a HUGE mistake? I really wish so. I am still following the IC diet and am not a wine drinker....but a beer to chill me out would no doubt be wonderful. I have been following the diet for about 2 weeks with no difference as of yet. The week before I was diagnosed I was eating Indian food and drinking beer. I notice no change now...other than weight loss. I have an appointment set up with a female uro/gyno. I plan on checking out the PT. I haven't started any meds yet...I'm so afraid of how they'll make me feel. Thanks so much for your input. It really means a lot to me. I hope that you are feeling well today....I sure miss those days!

[Little Sunshine]

Earth Lady

Thanks for your input. Was the PT that you did painful? They said they were going to have to put their hands up inside of me....which terrifies the living daylights out of me. They said they give you Valium first, but still. I have had so much trauma to that area that I would be alright if no one ever touched it again. Just thinking about it makes me sick to my stomach. I know you said that walking helps...I do walk my dogs everyday but am SO worried that I am never going to be able to do the type of exercise I was doing before. Do you ever do any type of exercising other than walking? If so, how does it make you feel? At any rate, I do have an appointment with a female uro/gyno....so we'll see. I hope that the sun is shining in your corner of the world. It is in mine, which definitely helps boost the spirits. I'm just ready to get my life back.

[Little Sunshine]

Donna

Thanks for your input...I am really worried that I do have both IC and the pelvic floor thing going on. I feel like each day, I get just a little bit more of the life sucked out of me.

[Little Sunshine]

Pictures of Cystscopy?

Just curious...were any of you able to view pictures of your procedure? I was just given a written report. I don't know if there are pictures, but if so, I might feel more comfortable with a diagnoses if I could actually see what was going on and not just read about it. Thanks!

[earthlady]

Yes I have to say that the first few sessions were painful and I wanted to quit but my dr. encouraged me to continue and I'm glad I did. After the first few sessions and the muscles relaxed it was ok and I'm glad I stuck it out. I had pain meds I could take when I got home, but didn't need them after the first few sessions. They can also do external therapy but my dr. didn't think this was as effective. Everyone's case is different though and mine were specifically spasms, so it will probably depend on what they think your pelvic floor needs. My pt assessed my pain level before she even started. Anxiety over bladder pain doesn't exactly relax your body, so I can see how all those muscles can really tighten up. I did go on a 3 hour hike a few weeks ago, and while I was hiking I was ok. The ride back though in the car was incredibly bumpy and jarring, so this did not help at all. I haven't purposely tried anything too jarring yet, so I will see what I can do and what I can't. It will be trial and error. Lifting weights seem to be ok. My bladder has been very happy and calm lately and I want to keep it that way right now.

[Little Sunshine]

Earth Lady

I am glad that you survived your therapy sessions and I am also glad to hear that you have gotten out to enjoy nature. Hiking is probably my all time favorite activity. I live in the heart of the Appalachian Mountains...and I love to get out and spend time with my 3 dogs (and husband!). We spent last summer backpacking and kayaking throughout Oregon. At this rate, I'm wondering if I will ever be able to enjoy these activities like I used to. I try to remind myself that I could be one of those cases that goes into remission for 8 or 10 years. I have had my dr put in a script for Gelnique. They didn't have it stocked at Wlagreens so I will have to wait until Monday...but at this rate, what's 2 more days! I don't know if you have a significant other, but I have found that all of this nonsense has really put a damper on my romantic relations with my husband. Thank God he loves me for reasons other than that. Thanks for all of the tips you have given me. I am glad to hear that your bladder has been calmer lately and I hope things stay that way for you for a LONG time!

[earthlady]

There are a lot of people who have posted here who have gotten a lot of their regular life back, so don't despair. As one poster had said- when you find the right dr., the right medication, and the right therapy that fits you it can make all the difference in the world. I think most people do find something eventually, and find a way to adjust. I was really bad at one time and am slowly finding what works for me and what my limitations are and have tried to stop catastrophizing the situation until my nerves are shot. I can see that patience is really really needed with this condition. This has not been my strong point so I am learning some really valuable lessons with all this. Yes it very much can put a damper on your love life. No doubt about it. Not sure what to do about that at this point yet. You may be out hiking again before you know it - you never know, so hang in there.

[Little Sunshine]

Earth Lady

Thanks for your vote of confidence! I haven't given up hiking yet....my beautiful dogs won't let me. I move a little slower, but so does my 13 year old dog. I forget what type of meds the dr has given you for your IC? The dr gave me Elivel (sp?) and Elmiron. I started the Elivel and while it appears to help with my urgency/frequency...it is making me a shakey mess. I haven't slept in 2 nights. This is terrible for me b/c I have suffered from chronic insomnia for 7 years now. I don't need to add anymore sleep problems to the mix. I am headed to pick up my Gelnique now and am hoping that will help with the urgency/frequency without the wacky side effects! I just can't stand the fact that all these crazy medications have to be put in my body...especially the ones that are essentially rewiring my brain. Anyhow, hope you are having a good day. The sun is shining here and it's 80 degrees. That definitely helps!

[earthlady]

Unfortunately I can't take the elavil or any other tricyclic med. It causes restless leg syndrome, rapid heart rate, and insomnia in me. Right now I am on Gelnique that I take about every three days due to it causing some nausea if I take it every day. It does work though for the frequency, irritation, and spasms and is not constipating for me. I was given the liquid Atarax but haven't started this yet. I have Ativan to take when needed, and this actually helps the most for sleeping and seems to even calm the bladder down a lot.
The sun is shining here on the west coast also, so I will be out on the river and mt. trails shortly!