NEED HELP from Australia

**adelaidedeb** · 06-27-2008, 01:00 AM

Im really a mess, i have seen soooo many doctors and they ALL have no idea what is wrong with me as my symptoms are so weird. The last dr thinks its a nerve pain but... i know its not and told me to go to a physio LOL LOL.

My symptoms have been constant for nearly 9 yrs. I have EXTREME terrible orgasmic pressure, the opening of my urethra if i press feels like its full of infected fluid and high pitched. I only wee twice - 3 times a day and keep the wee in because the more i wee especially if there isnt much wee in there i get this unbearable urge to orgasm but... it feels inflammed and infected. When its really bad like now im swollen at the end of the urethra. I have to walk with my legs apart. I have had some utis where it showed bugs. i have learnt to constantly drink and drink water, its the only thing that has helped me from going insane. I have had a terrible flu and my urethra is TERRIBLE. I cant sleep and the more i orgasm the more its high pitched. I feel like drinking something that will sterile the urethra. I hear girls on here with clitoral pain or throbbing. This is more like im swollen and extreme infected urethral orgasmic pressure. I cant take this anymore and fell like cutting all the parts out down there. I had a mri that showed L5 bulge in the lower back but they think that wouldnt do anything.

Is anyone from Australia, im in adelaide and drs here are wasting my money and time and im fed up with them not helping and thinking its in my head. And what on earth is a physio going to do with an infected urethra what a joke. I have heard of extended broth culture and wondering if that would help. Anyway with three children i find each day a challenge and try and not show im in this much distress, i just want to feel normal down there.

***ICNDonna*** · 06-27-2008, 02:00 AM

Have you seen a urologist? If not, I think that would be a good idea for you. I hope you get some answers soon.

Warm hugs,
Donna

**dg2901** · 06-27-2008, 09:52 AM

Have you tried posting in the Australia section of these boards? Perhaps someone could guide you towards a URO in your area who can help you; I know there are several regulars who post who are from AUS.

Hopefully someone will come along who can either guide you towards a DR, or who suffers with similar symptoms and can share their experience(s).

Wishing you well....
Diana

**adelaidedeb** · 06-27-2008, 03:57 PM

LOL i have seen urologist, gyno, chiropractor, you name a specialist i have seen them. Had two cystos and no one knows whats wrong

**Smokey** · 06-28-2008, 10:35 PM

Hi Adelaidedeb,

first of all welcome to the boards. i am from melbourne. i am quite sure there was a post on the aussie boards called encouragement and i am quite sure that this member was from adelaide. also i am quite sure there was another member who was from mildura. if you go to the australia boards you can go back to the start of all he old threads. you can pm me anytime

you can contact christine murray in melbourne she might put you in the right direction

Christine Murray
Clinical Nurse Consultant
Urogynaecology
Mercy Hospital for Women
163 Studley Rd
Heidelberg, 3084
Ph. 03 8458 4890
Fx. 03 8458 4878
Email: cjmurray@mercy.com.au

**Rosalie** · 06-29-2008, 01:03 PM

Hi Adelaidedeb

I think the person Lorena is talking about is Andrea (CoheandI and later Cohen3)
She lived in Mildura but also saw someone in Adelaide. I know that she wasn't happy with her drs and eventually flew down to Melbourne to see a uro.
However, Andrea hasn't posted for well over a year and I haven't been able to contact her.
But don't give up! Your story resonates with so many of us here. Getting the run around seems to be the norm. And as for it all being in your head? .....well then we are all crazy with you!
Lorena is on the right track. Try contacting Christine Murray or Elizabeth Thomas at the Mercy hospital. Perhaps they can offer you some suggestions as to who to see in Adelaide. I can pm you the phone number if you want to contact Christine that way.
Please keep posting. It was from stumbling onto this site that I finally was able to go back to the drs ( I had given up on them) with information that led to my life getting back to normal( or something close

). While waiting to get into see Anita, I found so much support and help here that I was already getting some relief from the diet and other helpful hints.
Hang in there

**adelaidedeb** · 06-29-2008, 01:51 PM

hi i have written to a dr in sydney im just waiting to hear if she will see me. I have found drs here in Adelaide hopeless and quite rude some of them especially with the orgasmic problem which is very very embarrising to me and is NOT a nice sexual feeling:-(

Is this anita clark a good urologist that deals with unusual problems like mine?

**Mothergoose** · 06-29-2008, 03:14 PM

Don't be too quick to write off the physio, I don't mean it as your only treatment. but alot of people with IC have PFD, and a physio can help with that, and it does give some releif to some symptoms. But you need to see a physio who speclises in PFD.

Mothergoose

**adelaidedeb** · 06-30-2008, 06:59 PM

but mothergoose how on earth can a physio make an infection go away? I have had this same extreme discomfort for years and i cant seem to see how a massage there would do a thing but just make me spend more money:-(

**SandyRN** · 07-01-2008, 10:59 AM

I know what this is because a few times a year I have the SAME thing, exactly. I feel for you...I really do. It has a name, it's Persistant Sexual Arousal Syndrome and it's cause for lots of jokes and people saying they wish they had it....but believe me they do NOT want it. It's unbearable. Having an orgasm does not help, it only makes it worse but the need is there so what do you do? Please search the boards for PSAS because I have written a few posts on it. Also, yahoo has a board for this. They may have changed their name because some foundation or what not was going to give it a different name...I don't know if they did.

You're welcome to pm me any time.....my take on it is that it's caused from PFD but that's just my thoughts.

I'm so sorry you're going through this!!

Sandy

**adelaidedeb** · 07-01-2008, 05:58 PM

thanks sandy for writing but... i have looked into that site when it first started and my symptoms are quite different to the girls on there. Most have just a heightened sexual appetite and DONT have the infection orgasmic burning i have. I can understand what they have would be annoying but my toes curl from the high pitched orgasmic EXTREME urinary feeling. Today i am soooo swollen in the urethra im walking like a duck and i could push the wall in as its the worse orgasmic feeling you feel like orgamsing but it does make the pressure go down abit but the rash burning infected feeling inside i hate:-(

**SandyRN** · 07-02-2008, 09:24 AM

I don't remember reading anyone having a higher need for sex with it, but I can tell you I don't. Maybe the site has changed some since the last time I read there which has been quite a while. I'm sorry it was no help to you. I know when it happens to me I do not want anything to do with a man, or any kind of sex toy. The urge is there but the release is anything but a release, it makes it worse, at least in my case. It doesn't happen to me all the time but it's about 3-4 times a year for a few days at a time. I would go literally insane if it were all the time. From what you describe I totally understand how you feel. I'm just sad that site didn't work out for you. There's not a whole lot about it on the web and the sites that are there are closed until you are allowed in because people tend to misunderstand and think it's about sex when it is anything but. We had one person on the board say she wished she had this til she understood what we were talking about. It sounds great in theory I spose, but it's terrible. I know when it happens to me I can't talk, walk, think, do anything but think about that area, and sometimes I have the urge to pee as well.

The offer is still there for the pm if you want. Our symptoms may vary some, but they vary with IC as well and we still are able to reach out here for help.

Hugs, Sandy

**adelaidedeb** · 07-02-2008, 01:57 PM

thanks for getting back to me. I dont think people understand what this feels like to me its not sexual at all. But when its really yuck i can orgasm a few times and like pump the blood around and i do feel abit better so my toes dont curl up with the extreme pressure. I feel dirty and ashamed and dont feel feminine at all as its so inflammed and infected feeling:-( I try and take one day at a time but to be honest i read other girls symptoms and can imagine yes it would be horrible but how i am i KNOW its alot worse symptoms and i cant get on and do anything and no way would i keep a job down. Can i ask if you have any root canals as i have one at the front that is playing up all the time and have seen on here that can release bacteria in your blood stream and cause other diseases ummm.