Symptoms Update-can you relate?

[kkothlow]

I was hoping that someone could relate.

I posted a few weeks ago some of the symptoms I was having, and some of them have gone away, but some have not.

After two weeks of Cipro most of the burning went away... or so I thought. I was doing really good except for the constant need to pee when I walked or jumped.

My urethra feels sore/pinching/burning, which my gyno thought was from irritation as I am quite "dry", and told me to use Vagisil. For the past few days things have been good except for the constant pressure in my abdomen.(which can sometimes be controlled with meds) I didnt have any frequency, and I almost went a whole day without thinking of my bladder (yipee).

My bladder is still quite sore after the first pee of the morning, but I noticed today that I had been able to hold it for more than 4 hours without even thinking about my bladder.

However tonight, I felt the burn again in my bladder, and my urethra hurts again. I emptied my bladder all the way, and feel horrible. Its almost like my bladder feels best when there is a little urine in it. Can anyone relate to that

I noticed today when I was out walking that if I didnt hold in my pelvic muscles, it felt like I was about to leak urine. Do I maybe have tight Pelvic muscles causing all my problems.

I feel like I want this to be anything but IC...but also want it to be IC so I can just know what is wrong with me. I dont know what to do. I was doing so good for almost 3 days, but dont know why I am going backwards. Urine culture is neg, on meds for possible BV, so frustrated.

In canada, I cannot see a Uro without my DR sending for referal..and he keeps saying - "follow up after you finish your meds" - "I dont think you need a Uro" He is a great DR, and I want to trust him... but I feel like he thinks my symptoms are not important enough to warrant a Uro. I am lost.

[Snowden1]

Can I ask what med you are on for the BV? Is it metro something gel? If so this causes many people with IC problems. I would take the oral antibiotic rather than the gel - this is where many of my issues began.
Teresa

[kkothlow]

Its an oral med....Flagyl something or other - lol

[Snowden1]

That's good, glad it's not the gel form:).
Teresa

[sully02]

Teresa,

I just went on the gel form of the metro.........................yikes

What happened with your IC when you used it? I am going to 2 different Drs, one is uro and the other gyn.

sandy sully

[Calinda]

Hi, I don't have totally similar symptoms, but I can understand you're trying to figure out "new" pain and what could it be?
It seems I have that feeling of pressure and that I've had to pee more often than I used to--even though I've been on the diet strictly. I just think I'm trying to be more conscious and aware of the different pains. I also have a twisted colon--which is supposed to cause pain. So sometimes it's like lots of pain but I don't know how to generalize where it's coming from.
It seems like I do just feel almost constant pressure in my bladder now--I did just post about how sitting in a particular chair bothers me and others too. I did notice that made more pain.
Just wanted you to know that I think it takes some time when you have pain it's kind of a pain--to figure out how bad is it? what made it worse? etc.
Hang in there and hopefully you'll be able to figure it out. I hope that you can get in to see a Urologist.

[Snowden1]

sully02,
When I took the metro gel my IC started full force. I had been having pelvic pain ever since I had had my hysterectomy. However, I got a BV infection about 8 months after my hysterectomy and my gyn gave me metro gel. I had a very bad reaction - like acid spreading though my pelvic area, but stupid me kept taking it - for 5 days. Then I had horrible pain that spread to my vagina, labia, all over down there. I went back to my gyn no visible problems but my vaginal ph was very acidic. Three weeks later I woke up with horrible pain in my bladder and peeing every 5 minutes. I thought I had a UTI, but they said no, just blood in my urine and white cells. They gave me Cipro (for no infection). It did seem to help along with Pyridium. This is how my IC was triggered (but pelvic pain after hysterectomy had always been there after a staph infection).

I am sure metro gel does not have this affect on most people - I think my insides were messed up by the staph infection that took forever to get rid of and this was just the last straw in there -- and it spread to my bladder.
Teresa

[sully02]

This disease is so frustraing. And when you get a Dr that does not help you along, it just makes it worse to tolerate. Some days I feel like just giving up.

Teresa, I guess I was lucky the metro gel did not bother me. I had an imbalance of bacteria in the vagina. That is what was giving me the VV symptoms. Thanks God, it did not get as bad as the first time. VV is really painful. I don't know which one I had more pain with, the IC or VV. I guess I am doomed to have both. I think I have IBS also. And a gluten sensitivity.

I plan to take probiotics from now on. Hopefully, they will keep my VV at bay. I too sometimes can't tell where the pain is coming from. I do think my IC is better. I have taken the cystoprotek for over a year now. I also use prosed ds. It helps me sleep through the night. I take 25mg of elavil at night but I know it is making me gain weight. I am also on Vagifem and now my Gyn wants me to use an Estring. Has anyone used it and has it helped with the VV? It is so big I am wondering how it is suppose to stay in there.
Sorry to be a downer today. I promise to be better about posting negative stuff but some days I just need to hear other women know what I am going through.
sully

[Snowden1]

sully02,
I don't think you will have to have VV forever. When my IC started the nurse practioner did the q-tip tests to see where I was hurting down there and it was really bad. Now I only have VV in a small area. I don't know why it got better, but it did. I stopped taking baths because that was sooo irritating to the tissues. I now use that soap they sell in the ICN shop. Also, I used Emu oil after every shower and after urinating (I kept it on the back of the toilet). I don't really know if this helped or if it got better on its own and will come back.

Teresa