Very Confused With Multiple Diagnosis'

[hdrenzyk]

Hello everyone! I am very frustrated at this point and was hoping that someone here would have some answers for me. Here is my ordeal......I have been having painful and heavy periods since I can remember. I have been on the pill for about 6 years with no help to my symptoms. When I do have my period the pain is in the middle of my lower abdomen and feels like a contraction. It is very intense for about a minute, then dulls, then sharp, then dulls. This continues for about the first 2 days of my period. Pain meds only take the edge off. My doctor did a Lap 3 years ago and found some small spots of endo but nothing major. The surgery did not help my pain one bit. We continued with the current BC treatment because I refuse to go on Lupron. About a year ago I started to have problems with my digestive system. I went to yet another doctor who ran more tests and told me that I had IBS and put me on more pills. Well nothing changed so I went to a gastroenterologist who then did a colonoscopy and found nothing. By this point I was still having severe period pain a long with some digestive problems. I had a medicine cabinet full of meds, none of which helped. My GYN then suggested that I go to an endocrinologist (YIPEE another doctor) he told me that I may have endo on my bladder. He suggested that I go to see a urologist. (once again I felt like the hot potato, no one wanted to hold me, they just kept passing me along) This brings me to my current situation. I am having a Cystoscopy & Hydrodistention on Thursday to see if I might have IC. I am scared that the doctor will once again find NOTHING and I will once again be left with un answered questions. My pain is so un bearable that I do not work during the first two days of my period. This is getting to where I am starting to feel hopeless.

My question to any of you is have any of you experienced any of this? What kind of treatments have you tried that I have not? Could I possibly have something else besides endo or IC?

Sorry for the long post but I appreciate any response as I am almost at the end of my rope with all the docs and meds!!

BTW, I am only 26 with no children. Thanks for reading!


-Heather

[Kiyoka]

Welcome Heather, i'm sorry your dealing with all this stuff..with the doctors. It's such a big pain isn't it. I also have really hard peroids, and hurt a lot. I am still searching for a answer. I think I have endo. My primary doctor also thought I had IBS as wel.. but I had the coloscopy done as well and nothing showed up. I had a endoscopy...but they said I had acid reflux. I wish I could help you out, but I just wanted to let you know that your really not alone in what your going thur. I'm here if you ever want to talk. I'm 22 single as well.

[Katrina]

:grouphug: :welcome: to the ICN Heather!
Every disease you named....IC, IBS, Endo...I have and a lot of us do. One thing about Endo is that they may see a small amount of cells but that is not a meassure of your pain.

Sounds to me like you are having bladder spasms around your period. Was any of the meds you were given for IBS a antispasmodic such as Hyoscyamine?

Could you have something besides Endo or IC....well you have Endo...no doubt about it...you may have a mild case that is not the cause of your symptoms though...no way to be sure right now.

Endo pain isn't sharp like you described....You could have IC but it sounds quite likely that your having bladder contractions. When you have that pain that feels like a contraction do you ever feel like you have to pee???

You are not alone....I am 28 no children and have 13 or so illnesses...I know the difficulty of diagnosis after diagnosis...I also know all the stress of seeing multiple specialists and searching for the answer to what is wrong.

I am having some tests done on Thursday too...so we can pray for each other that things go well. :pray: If your doctor finds nothing I would look into the possibility of overactive bladder.
http://www.sworcare.com/IC%20survey.htm this is a questionaire as to weather or not you have IC

http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!



http://www.ic-network.com/forum/sho...90935#post90935 Newbie kit from the oldies to the
newbies

http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.

[emilyrose197377]

Welcome to the Ic network you will find a lot of info about ic and support from other members. I also have endo and Ic and numerous other chronic diseases. I just wanted you to know you are not alone.

Take Care
Kim

[ICNDonna]

At least you should know by the end of Thursday whether or not you have IC.

Sending gentle hugs and healing thoughts,

Donna

[hdrenzyk]

Thank you for all the support! This has been a quite trying time as many of you I am sure can relate to. It helps to know that you all are here, it gives me a feeling of relief. I am not sure if I have over active bladder, also I do not have one of the main symptoms of IC, frequency. I only have to go to the bathroom about 5-6 times a day. Do you necessarily have to be going to the bathroom 40-60 times a day to have IC? This pain is just so severe that I hope to have an answer soon!

[Kiyoka]

I don't go to the restroom 30 to 40 times. I go about as much as you do..5 to 6 times a day.

[AnneClare]

God be with you!!!!!!!!!! I also have multiple diagnosis. My answer has been to find a Primary Care Physician (PCP) who agreed to act as "case manager" for what all the specialist are doing. None of the doctors were talking to one another and were just piling on more and more medication. My PCP has worked very diligently to reduce the number and quantity of meds. I am slowly getting better and hope that you will too. Good luck Thursday!!!!!!!!!!!!!!!!!!!!!