Reposted for new member

[ICNDonna]

Today, 02:38 AM #14
AJB
Registered User


Join Date: Jun 2005
Posts: 1 Is anyone out there feeling like they're up against a brick wall trying to get past t
he "ladies get this problem,it's just one of those things you have to get on with".
I had a hysterectomy at the age of 29 for severe endometriosis,the whole of my abdominal cavity was stuck together with lesions,so I read with interest the Evil Twins Syndrome as I have been having pain and frequency problems. I printed it off and took to the hospital with me as I was having Urodynamics tests. I was told by the consultant the link was rubbish and I shouldn't believe anything on the internet.The test was very painful as the catheter came out twice. I was told that I could hold enough and there wasn't anything they could find.I came home and just cried,I am in such a lot of pain with it and go to the loo a couple of times an hour.I've had a cystoscopy that showed inflammation and scar tissue,apparently none of this points to IC according to my doctors.So what do I do now .Its so frustrating that I've already been through this "women's problems" with the endo for five years and now its happening again.Please tell me I'm not an hysterical woman!

[ICNDonna]

:welcome: to the IC Network

If your doctor isn't listening to you, it may be time to find a different doctor. You are definitely not a hysterical woman!!!

Have you seen a urologist? If a simple cysto, with no distention, showed scar tissue and inflammation, that does at least suggest an IC diagnosis.

The Patient Handbook at http://www.ic-network.com/handbook contains a great deal of helpful information.

Donna

[Dixiefireball]

:hi: and :welcome: to the ICN. I agree with Donna sounds like if your doctor isn't listening to you its time to find a new doctor. You do need to be treated and shouldn't have to suffer in pain. we do have rights.
please check out the handbook donna gave you the link above its a very useful sources of information the IC diet may help you a great deal until you can get a doctor to listen to you and get you on some treatments
if you need anything please let us know we are here for you and most importantly we understand.

I was told not to believe anything i read on the internet in the pass too, but i have learned so much from this site about my diease that has been very useful and most has been right on the money.
sending you hugs and prayers for a brighter tomorrow rhonda

[traceann]

I completely agree with the ladies, if you aren't being listened to -- time for a new doc! Your troubles are very REAL, not in your head, and sometimes you have to see a lot of "doctor frogs" before you find your "prince or princess", lol. Keep your chin up and read all you can -- knowledge is power and this is a great site to build that power! I know for me, I got all I could from here, and went into my doc's office armed and "dangerous", lol. It got me a diagnosis and the right meds finally! Persistance can pay off, I know it's hard when you feel like you just aren't being listened to, and in effect "dismissed".

Glad you found the site, ask all the questions you need to, or even just to vent. The people here are GREAT, and have been a total lifesaver for me -- I don't know what I would have done without this resource for info and support!!!

Hugs,
Tracey :)

[AJB]

Thank you to everyone who has offered support and advice.The site is a wonderful support. I have downloaded lots of info and intend taking it with me on my next visit.England seems to be a way behind the states in embracing new findings.I'm not surprised to find the "don't question me youre not qualified" is not unique.I am currently trying Prelief and adjusting my diet which I hope will help.Wishing you all a comfortable day!Alison

[traceann]

Glad to hear we could be of help to you! I do hope that you are feeling better, even having more info sometimes can make you feel better, if not physically, but mentally!!

Take care and hope to see you around!
Hugs,
Tracey :)