Help!!

[MARIE29]

I too am new to this forum. I started having pelvic sensitivity 11072006. I have not been able to wear clothes that put pressure on my abdominal/pelvic area. I have not worn jeans since 11/06. I have always had frequent urination as long as I could remember--but never painful or real urgent. Over the last couple of months I have not only felt sensitive/tender, but also inflammed and irritated in that area. A lot of times the pain is in the center of my pelvic area--my bladder. But I also have sudden shooting pains off and on in the whole pelvic area (also from rectum to pelvic). I tend to get more bloated too. It seems to get worse at night, with fitted clothes, standing for long periods of time, and it is even a little uncomfortable in the shower. I have had atleast 4 ultrasounds done which are normal. At first my GYNO thought it was a UTI and gave me Macrobid and did a pelvic exam--when she noticed my bladder was very senstive. The Macrobid did nothing and so she stated I may have IC.
I went to urologist 010307 and he did a urodynamic test which determines how much your bladder can hold and mine held very little--hence he said I had a overactive bladder. But he said a lot of women have that. I really don't think that this was a good test (error friendly), although because I always do have to go to the bathroom after I drink a little water, I went along with it. My bladder has never caused pain. He then told me that the only way for me to determine if I have IC was to do a cystoscopy with hydrodistension and a biopsy of the bladder wall.
012507 I had the cystoscopy w/hydro and 4 biopsies. I was under anesthia, but when I woke up, I was in severe pain--the worst ever--my bladder was going into spasms. I went home with a catheter, and once I got home and took some Percocet, the pain was better. I got the cath out the next day. After the surgery, when I went to use the bathroom, my bladder had a stinging pain right before I could urinate--it was coming from my bladder--very uncomfortable!! I was worried and miserable. The nurse said my bladder probably just needed time to heal from biopsies--I have never had burning or any pain during urination until after surgery.
Path Report---BLADDER POST WALL:superficial edema and congestion
BALDDER RIGHT LATERAL WALL: superficial edema and congestion.reactive epithelial changes. Notes: special stains(AFB) performed on specimens do not show increased mast cells or ulcerations. The histologic changes here do not support nor exclude IC.
I was very upset because I believed, based on what my urologist said that this biopsy was either going to let me know if I have IC--one way or another, which I am learning is not true.
Result: My urologist said that my bladder under hyro definitely looked like I had IC, but there is no evidence of IC from the biopsy. So he said he would just treatment for an overactive bladder for now, and act like I don't have IC. He put me on Vesicare for OAB and Macrobid. I don't feel good about the whole process at all or the doctor. I feel like he just doesn't know what to do and isn't informed enough about IC. I am still having a stinging painful feeling in my bladder now, before I urinate and just in general. It is not as bad as it was after my surgery, but I worried I made evrything worse.
I am in pain everyday--some days are better than others. The only thing that helps me is a heating pad.
Just saw my GYNO again 021507 and bladder was sensitive on pelvic examination. She said this is NOT a gynecological issue--it is strictly your bladder. I have an appt with another urologist 032107.
Am I taking the right steps? I am so worried all the time? I don't want this pain to affect my work and my relationship. Has anyone experienced the pelvic/bladder sensitivity to wearing clothes? Please help! Thanks

[traceann]

Hello and welcome to the ICN!

There are many many of us who have had to set the jeans aside and take up wearing comfy skirts, due to the clothing aggrivation issue, so you are not alone!!! I just wore really lose-stretchy type jeans, that was more comfy for me when my bladder was acting up.

If you are not comfortable with the doc that you have just seen, by all means check out the other one! I think you are doing the right thing by getting another opinion, there is nothing wrong with that at all. Especially when one just doesn't sit right with you at all....

I recommend trying the IC Diet (you can find info on it in the Patient Handbook link at the top of the page), that was a great tool for me to help control my symptoms while I was waiting for my medications to do their thing. It's a bit of a challenge sometimes - giving up favorite foods etc, but it helped me so much it was worth it to skip pizza so I could be out with my friends instead of home in pain! And it's something you can do for yourself, no doc required and you have to eat anyway, right?

You can also try drinking a tsp of baking soda in a big glass of water (provided you don't have other salt-sensitive health issues) as that can help calm an aggrivated bladder, heating pads work great as do the things like the ThermaCare Heat Patches, AZO Standard or Uristat - both are over-the-counter pyridium, which is an analgesic for the bladder and can numb things up nicely, but does make you pee orange. It can stain undies etc, so pantyliners come in handy, lol. It's not something to use long term, as too much can be bad, but can help get through some rough patches - and you can ask your doctor how much you can safely take etc.

I do hope you get some answers at your upcoming appt! Do keep us posted, and again, welcome to the gang and hope to see you around the boards!

[izazen]

Traceann, You are so sweet and helpful! I know you have given me sage advice many times. You are a great resource on the ICN.

Regarding the baking soda - it has changed my life - for the better - but I'm not sure why. It sure has helped with the burning/aching I often get after "going." - Now I don't have to walk like I just got off a horse after doing so!

Is it because it alkalizes the acid in the urine?

I love baking soda!!!

[Georgia L]

To Marie 29
have you asked about or has your uro suggested a potassium senstivity test? that is more concise in determining IC or not

[traceann]

Thank you so much izazen! Yep, it helps to neutralize acids, it's also good for heartburn too, lol!!

[MARIE29]

Thanks for the friendly responses. Everyone is so nice here I feel so much better talking with people that truly understand my pain.

BTW..How does pyridium work? How many times a day do you take it and when does it start helping? I took it once not for long because I was scared it would make me feel worse--it seemed like I was urinating more, but that could have been coincidence. What about uristat and AZO?

[traceann]

I usually buy AZO or Uristat, depending on what I can find at the store, or whichever one is cheaper at the time, since it's the same stuff. It's an anagesic for your bladder etc, it numbs things. I found this out unfortunately one time a loooooooong time ago, when I took it, and it nauseated me, so um, yeah, it came back up and numbed my tongue, lol. I think the box says to take every so many hours. I used to take it, the I would redose when it was wearing off etc.

[wombat]

Hi Marie,
I have had sensitivity to clothes too. I can no longer wear belts and only wear loose fitting jeans. I'm really into skirts now!

I've had still undiagnosed bladder/pelvic pain now for 2 years and recently had a cystoscopy but not hydrodestention - not sure why uro didn't do that as well. I actually thought she was going to because thought it was standard for IC testing, but have had bad pain flare just from the cysto so feeling reluctant to have anything more done at least for a while. I know how frustrating it is to have things done and end up in worse pain. Take lots of care of yourself

I've found that relaxing music and meditation have been helpful. I've also practised breathing through the pain. I used to fight it in the beginning, especially because it was so severe and alarming and I didn't know what was wrong, but finding now that deep breathing and not fighting against it seems to help. Somehow by relaxing into it and feeling it seems to actually take some of the power out of the pain (if that makes sense?!). I'm thinking of trying hypnotherapy next to help with symptoms.

Your symptoms sound a bit similar to mine because I also had some degree of urinary frequency before, but never bladder pain until 2 yrs ago. And i've also had the shooting pains throughout the pelvic area which caused me to think maybe the source of the pain was elsewhere for a while, but am sure now the central core of the pain is in the bladder (had investigative gyn. surgery Aug 2005 and was told i had a normal pelvis). The uro said the bladder pain could be part of my overall fibromyalgia condition which causes widespread pain throughout the body, but sometimes can concentrate in the bladder. I've had fibromyalgia for almost 20yrs, but bladder pain only the last 2. I have read that fibromyalgia pain is largely neuropathic (faulty pain messaging from brain) and sometimes wonder if the bladder pain has something to do with pain messaging gone haywire and wondering if hypnotherapy will help with this.

Thanks for your posting. Each time I read someone's story it helps to not feel alone and that there are other people out there who understand. Good luck with everything and take care,
wombat