Help Me!

[kazi]

Hi everyone im back again...so again im now back at another urogyno lol yes yet another one..and again it seems so answers for me :headbang: Apparently according to all of thm i don't have IC...Even though many of my symptoms are identical to them...Anways the latest urogyno that i saw on Tuesday gave me an internal examination.And the minute he put his hand up my vagina the pain was terriable!!And then he said he began tapping on my urethera and my ovaries to feel for any abnormalities etc!He said he couldnt find anything that was obviously wrong with me!But i was like ummm "hello" clearly if im in this much pain their definetly has to be a problem...Anyways as per usual he like all others said that what i'am experiencing is the after effects of a really bad UTI that i had 2 years ago,and that it will eventually go away..BUt i mean does that sound reasonable to everyone i mean can it really take your body 2yrs to recover from such a bad UTI??Keeping in mind that i'm a healthy 19 y.o non smoker and drink only once every few months..The pain i experience is in my urethera a burning sensation often that gets worse after i urinate,but ingeneral just plain hurts a lot of the time...I can't have sex with my boyfriend because its too painful...this is ruining my life its wrecking all aspects!! Anyways the eurogyno put me on a drug called hiprex im not familiar with it..but is anyone else??And does anyone have any ideas of what i could have??i mean i have had cystoscopy after cystoscopy-AND NO IC PRESENT...so i've come to conclusion that i dont have that!!And does anyone know of any good eurogyno's in perth or even in australia, as im willing to travel anywhere for help!!Please somebody help me!!!xoxoxox :grouphug

[Rosalie]

Has your Uro considered Urethritis? Unless they look at the neck of the urethra they might not find it. Your symptoms sound very much like mine and this was my diagnosis. Now on 25mgs Endep daily, my pain is under control.
Still have a flare every few days now but I can control them with diet and bicarb. Touch wood!

[kazi]

Urethritis???No ,no one has ever mentioned or even considered this one to me at all...what are the symptoms like??is it curable??What methods are used to treat it??And when your treating it do you have complete relief??Can it ever just go away?? I was just looking it up on the internet then and it says that its caused commonly by sex....see thing is i've been experiencing this pain before i even became sexually active.... but even so now im scared to have sex because it hurts so much! And when you are treating it does it make sex less painful in other words does the pain go away when being treated!!hahahaha sorry i must really be annoying you!!im sorry :grouphug:
its like 21 questions hey!! But if you could reply back i would be so grateful!! love karis xoxox

[ICNDonna]

IC is not usually diagnosed by a cystoscopy done in the doctor's office. It's not until the bladder is stretched under anesthesia (hydrodistention) that the IC is visible. There is also another test (potassium sensitivity test) where they instill a potassium solution into the bladder --- if it causes an increase in pain, it's pretty certain it's IC.

Many of us were first diagnosed with possible urethritis or trigonitis before finally getting an accurate diagnosis.

One thing I suggest is that you put yourself on an IC diet and see if that helps.

Sending healing thoughts,
Donna

[tigger_gal]

The worst IC bladder can look "normal" with an in office Cysto. Donna is right, about the hydrodestion. Have you asked your uro to do one? I would think that you would not have after affects 2yrs latter from a bladder infection.. What about PFD? has that been mentioned?
Sending you hugs and wishing you lots of luck for a quick dx.

[kazi]

Yep i have had a cystoscopy in fact 4 done under hydrodistention...again no tell-tale signs of IC were present...what else could it be?

[Rosalie]

Kazi, I have had this problem for over forty years, long before I was sexually active, actually I was only a child when I first had symptoms.
I read that stuff on the internet as well and got quite embarassed about telling anyone the diagnosis my uro gave me.
But then,the medication I am on has given me such relief, she can call it what she likes! She said it was a bit like IC but localized at the neck of the urethra and bladder. I don't get the hip or thigh pain that the ICs get.
I assume that there must be more to Urethritis than they know. Just like IC.
Whatever helps IC helps me. So I am on Endep(elavil) 25mgs a day.
When she first diagnosed me she said that it "might" be curable. Although I have been on medication for 12mths now, I still get breakthrough pain but I can manage that usually with pain killers and bicarb soda.
I don't know if this is what you have or not but I suppose its worth mentioning it to your doctors.
Good Luck. Regardless of your diagnosis, this site is a wonderful place for support, help and caring. It was the first time I had ever felt as if I wasn't going insane, people actually had some idea of what I was going through and really cared.

[kazi]

hi rosalie and thankyou so much for your reply! In fact i was just wondering since you live in melbourne i was wondering if you could give me the name of the specialist that you are seeing there because on the 25th of january I'am going to melbourne with my best friend hehehe for a shopping spree and was actually hoping to get into see a gyno/uro whilst i was there?? Since i will actually be moving to melbourne to study in late April next year i thought this would be a perfect opportunity for me to find some1 whilst over there?

Thankyou love karis xox

[Rosalie]

How nice that you are coming to Melbourne. I hope you like it here. Are you studying at uni? If so, which one?

Ok, I see Dr Anita Clarke, she is at Suite 2, Ground Floor, 141 Grey Street East Melbourne Ph 9417 6241. Kirsten is one of her patients as well.
Anita is pretty down to earth and I like that about her.

If you want to see her either while you are here in January or April, I suggest you contact her office ASAP as it takes a while to get in. If you want the name of another urologist we can see what we can find out for you.

So you are coming for some shopping. You can shop till you drop here and start anew each day. Bring your credit card!!!!!!!!!!!!! and comfy shoes!!

[kazi]

Hey Rosalie!! Just want to say thankyou again for all the reply's you have given me on my topic!!and a special thankyou to everyone else that has helped me as well!I luv uz all!!xoxo Yes im comming to melbourne on the 25th of january for like 5 days!!can't wit it will be my 5th time there lol i love it so much there!!it's so vibrant and theres so much to do its great!!And im kind of on the lookout for a place to rent with my best friend when we come there to live in April next year!! I'm so excited im doing an advanced course in Melbourne on professional make-up artistry!Here in perth i have already passed my diploma in it but im looking to advance my career further in it,hopefully in tv and catwalk etc.Because i figured if i want to go somewhere in the industry Melbourne is definetly the best place to get noticed!! Hhehe i know i cant wait to shop again and im like in love with chapel st hehehe i wanna live in that place!!heheh but i think its a bit too expensive tho!! By the way do you know of any good places/areas to rent in Melb that are not too expensive for a student and close to the city in melb??

By the way tommorrow im going to call Dr Anita and see if i can schedual an app. very soon!!thankyou so much for giving me her details i really appreciate it!!hopefully she will be able to help me!!

By the way just an interesting fact i was told the other day and was wondering whether it sounded familiar to you.... The past few specialists that i have seen and asked about the possibility of me having IC..all said that it was highly unlikely and that the only reason that i think i could have it is because its so overly diagnosed and popular in the USA??Have you been told this also?? And i was just wondering whether you have heard or a eurogynocologist called DR Tim Jeffrey??apprently he is suppose to be one of the best and he's in perth...Have you ever heard of him??

Hope to hear from you soon!
Love karis xoxoxox

[Rosalie]

Karis, I haven't heard of that DR but hey! I've never even been to WA. I know that is very remiss of me but one day I will make that trek accross the Nallarbor" My husband did it many years ago on a motorbike...me? I prefer an airconditioned car!

As far as accommodation goes for you here in Melb. Ther is so much to choose from that it depends on a lot of things. Is your college in the city or the suburbs? Do you want a house or flat? Do you want or need to be close to the city or the college? Near the beach or not? Student accommodation? ( there is a fair bit in the city itself, especially close to the universities)
There are some pretty exy suburbs around but I'm sure you will be able to find something. Check out some real estate agents when you are over in Jan. You might even be able to find something through your colllege.
You know when I was first out of secondary school ( many many long years ago now), all I ever wanted to be was a makeup artist in the film industry which at the time here was not exactly flourishing. So there wasn't anything I could do to get into the industry. I wish you well! There are far more opportunities these days. Good Luck.

[helenprestegard]

HI Just read your messsage, good luck in Melburne. I am movingg to Perth art xmas,can u list me the uros u have tried that u find ok, thanks Helen

[helenprestegard]

Hi KAZI, IM LIVING IN SPAIN AT THE MOMENT , i HAVE HAD IC FOR 7 YRS NOW , CAN YOU RECOMMEND ME A GOOD DOCTOR,DOES NOT ESPECIALLY HAVE TO BE A URO, BIT IF POSSIBLE A DCO THAT HELPS WIT IC OR BLDDER CONDITIONS. WE ARE COMIMG TO PERTH TOMORROW SO IM EXSITED TO SEEE WHERE IT IS . IT SEEM VERY FAR AWAY FOM EUROPE, i HOPE i CAND FIND A DR TO CONTINUE WITH MY MEDS OVER THERE.HELEN