Please help me!

[Dees1977]

Hello. I am 28 yr old female. I have been having pelvic pain and frequent urination for 5 months now. Some days are better than others. I had a kidney stone 2 yrs ago and had a cysto and IVP done...my urologist said everything looked great. I recently went to my gyno who done a pelvic ultrasound and found nothing..So she scheduled me for a lap on April 8. I have been to the urologist 2 times in the last month. He checked my urine both times and told me there was no sign of infection or blood. HE told me to drink more water and that he thought I have overactive bladder. It doesnt hurt when my bladder fills up or when I pee. Sometimes I feel like I have bladder spasms. Do you think I have IC or endo or what? Please help! I am so frustrated and depressed. Thanks

[Portia17]

Hi Dees

I know how you feel.

When was your cysto done? Was a biopsy taken because on my cysto he saw nothing but found the i.c. with the biopsy


if he thought u had an overactive bladder, why did he not give u something?

My first urologist thought I had that , he never helped me so I stayed in pain till the 2nd uro who did the biopsy and found the i.c. Uro never gave me pain meds so I went to pain mgmt

My gyno checked me and did a sonogram and found nothing and then did a lapro and he found nothing and then sent me back to uro who found it with the biopsy

Please find out if a biopsy was done on your bladder?

[Dixiefireball]

first off :welcome: to the ICN boards we are glad to have you here while you on your search for answers.
Your doctor really needs to rule out other things and one of them is Endo before getting dx with i.c but endo is common with I.C.
after other things has been ruled out it will be time to test for I.C some doctor dx it by systom alone. which is easier on a person but doesn't give the person and idea how bad it is.
some does the poss. test which doesn't feel good and others do the hydro/c. which is full proof. in dx i.c
you may get some relief with the IC diet you can find that at www.ic-network.com/handbook also there you can find many treatment op. there for I.C please take some time to look over the handbook i think you will find it truely helpful.

another thing does your doctor know what i.c is and how to treat it? that is an important question if you don't know you need to ask because a lot of uro don't believe in i.c and if yours don't you need to find one that does..
Follow your heart it will lead you to the answers.
sending you hugs and prayers please keep us posted how you are. WE DO CARE!
Rhonda :grouphug:

[patricia1]

Hi Dee and welcome to the site :welcome: . First off its hard to say for sure if you have IC or not. Although the pelvic pain and frequent urinating are signs of IC. The pelvic pain can also be a sign of Endo. Sometimes IC and Endo seem to run together. If you have IC or want to try and find out starting with the IC diet is a good place to begin. It is listed in the patient handbook I believe. Only way to know for sure if you have IC you will need to have either a potassium test (sorry for spelling) or a hydrodistention with cystoscope. This needs, the hydro, to be done under anthesia at the hospital as it is usually out patient surgery. Sometimes a urologist will do a cystoscope in the office to rule out other things. Normally the office one will not show signs of IC. Maybe the urologist can get together with the gyno when you have you lap done and do the hydro then. Best of luck to you sometimes the road is a hard one to travel. I hope you find the answers you are looking for.

[Dees1977]

Thank you for the warm welcome... It means a lot to know there are other people out there with similar problems. I was wondering what symptoms you have with your IC...and when you urinate is it a lot or a small amount? Thanks


Dee

[Portia17]

Hi dees

Mine started out that way like urinating every 15 minutes then I don't know happened, I stopped urinating every 15 minutes so now I urinate about 15 x a day put in exchange I got the constant 24-7 pelvic pain. I also get the burning as well.

How often are u urinating?

Hugs
Mary

[Dees1977]

I urinate every 1 to 2 hours. I don't burn when I pee..and i don't hurt when my bladder is full or empty. I am SO SCARED.. All i do is worry about this non-stop....

[Portia17]

Dees

So you have the constant pain down there and not to bad of urination?

If so, that sounds like me

What I did before even getting a diagnosis (because it took them long) was I went to pain mgmt and she perscribed some things in the meantime. Then when I got the diagnosis she started prescribing different things.

Now the pain is pretty good when I sit or lie down but she is going to work on the part as I can never stand or walk too long

My advise, have the lapro done like I did and then the urologist
In the meantime, if they won't prescribe pain pills for you (cause regular doctors are scared, but maybe yours will) then go to pain mgmt in the meantime.

Hugs
Mary

[Betsie]

When I was dxd in 2002, it was during an emergency laparoscopy....too long of a story, but in a very rushe decision, the URO who did not think I had IC, scrubbed in and did a hydrodistention with cystoscopy after the GYN procedures....any reason to think you might need another look and is this a question worth asking if they could do a similar procedure? I can't say I loved it, as I ended up with abominal surgery...but it did get a lot done through one anesthesia event...but it could also be there is no reason for you to have another...I am not entirely sure when UROs feel they should repeat these if at all....though I do know many here have them as a form of treatment.

Just a thought, hope it made sense...btw/my regular primary prescribes all pain meds, and its a good situation for both of us. My uro did prescribe for a year or so, but I dont think that was his norm at all. Good luck with everything.

[Sarojini]

:welcome: to the ICN...

It's hard to say whether you have IC or not -- only your doc can do that. It sounds like they are trying to rule things out, which is pretty normal when someone complains of pelvic pain.

You may want to read the patient handbook link that Dixiefireball gave you-- it describes the symptoms and the diagnosis of IC very clearly. For example, you will see that a plain cysto in the uro's office usually won't show IC -- you usually need to have the cystoscopy performed with a hydrodistention (stretching of the bladder with water) under anesthesia in the hospital for the signs to appear.

Most of all, don't panic -- you are headed down the right track by discussing this with your doctors, and while it may seem like it takes a while, they are just trying to rule other things out. IC is largely a diagnosis of exclusion...

[Dees1977]

Thanks again. My pain is around my ovaries..or that is where my gyno said it is..Is that where you have your pain? What type of pain do you have is it a dull ache...sharp, does it bend you over like bad menstral cramps? Thank you for all this great info.. It is so nice to here from other people.. Oh and how common is this disease is it more common than endo? And can endo cause frequent urination?

[Portia17]

dees

My pain is between like above the clitoris too below the belly button

I do not know about urination and endo but you should go to www.webmd.com
type in the whole spelling of endo and click on the symptoms and see if that comes up

Mary

[ICNDonna]

It's good that you are seeing a doctor for testing. I think it's good that you are being treated conservatively until you have a diagnosis.

Donna