Re: please help newbie with info/advice on treatment and diagnosis

[Guest guest]

Thank you so much for your reply, Viv. I'm more in the middle of

the state in Valdosta. Do you have any suggestions for compassionate

docs? We have to travel to Tallahassee (1.5 hrs away) for pain mgmt.

and that doc is getting tired of dealing with a problem that isn't

responding to his treatment, so he's considering that it has a

somatic component now. I think after a year of excruciating pain and

doctors who can't see beyond their specialty (urology, gynecology,

GI), my daughter's pain is certainly magnified. It does seem that

the more docs you see and the more they dismiss you, the more

intractable the pain becomes. That doesn't mean there isn't a

physical or mechanical cause of the pain, though.

Several people have suggested that she see a neurosurgeon. We hate

the idea of surgery and she doesn't have insurance or any kind of

assistance, so...

Thanks again for your response... any advice is appreciated. We feel

we're just about at the end of our ropes.

Betsy

>

> > We live near the Florida-Georgia border and would appreciate

those who are somewhat nearby giving us resources. <

>

> Hi Betsy...where do you live? I live on the coastal FL/GA border.

> It seems that some are destined to be with doctors who don't

believe or give us the brush off when things we feel can't be

explained. You have the right to get a second opinion by another

doctor. You can get as many opinions as you want or need.

>

> Viv in GA

>

>

>

[Guest guest]

Due to your daughters abdominal pain I would recommend she is

referred to a gynae asap....particular attention should be made re

cysts, adhesions and Endometriosis - as the symptoms she is

experiencing are similar.

Endo for example is oftern misdiagnosed as kidney, bladder and IBS

problems rather than the correct diagnosis.

For further information you may wish to look at the www.endo.org.uk

site to compare info in more depth.

cheeres

Lee

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> Chronic_Pain_Assistance

> From: " Betsy " <ebt213@y...>

> Date: Thu, 05 Feb 2004 02:37:23 -0000

> Subject: Chronic Pain Group newbie needs pain dx-tx info

>

>

> Hi all...

>

> I'm very new to this board and hopw that all of you who are

> now " experts " in chronic pain can help me help my daughter. She is

> the CP person and I'm te one with computer access. She has had

> severe groin/back/bladder/kidney pain and problems since 1/03 when

> pain hit her suddenly in her lower right abdominal/groin area . It

> quickly spread over the bladder and left kidney area. She has a

> history of kidney stones and went to the ER thinking that was the

> problem.

>

> To make a very long story short, sort of (LOL), she has been

> bouncing from doc to doc with most of them throwing up their hands

> and telling her they think it's stress related. However, this pain

> is so severe that she has been hospitalized 3 times and most

> medications have had very little effect on it except IV things in

> the hospital.

>

> After multiple tests, labs and radiology, etc. she was diagnosed

> with Interstitial Cystitis due to painful urination, etc.... then

> undiagnosed. Then urethral syndrome, then undiagnosed after that

> pain subsided. Finally a pain doc did MRI and found protruded discs

> at L4-5 and S1 (we think she also broke her tailbone when she was a

> teenager) and multiple tender points in the abdominal wall and

> pelvic floor. He also confirmed she has a fatty liver and

escalating

> liver enzymes. He has her on Tramadol and Neurontin. He has

> recommended physical therapy since 1 epidural injection and 3

> injections in the inguinal nerves have failed to give her much

> relief. For a month her back was better, but now it hurts again and

> the groin pain and occasional pain over the kidney are always there.

>

> Has anyone got any advice on what she can do? The pain doc seems to

> be getting exasperated now just as everyone else has. Has anyone

> ever known anyone who has this kind of pain. My daughter used to be

> a relatively happy person who was going to school and working part

> time. For a year now, she hasn't been able to do much more than

walk

> around the house before she feels so bad she has to lay down. It

has

> made her life almost unbearable and my heart breaks for her and for

> all of you who are suffering so much.

>

> Thanks so much for any help or advice you can give. We live near

the

> Florida-Georgia border and would appreciate those who are somewhat

> nearby giving us resources.

>

> Best to you all...

> Betsy

[Guest guest]

Hi Lee...

Thanks so much for your reply. I really appreciate having a place

where the pain " experts " can give me info and advice.

My daughter has had 3 GYN exams over the last year including a

laparoscopy last February to rule out any endo or ovarian cysts,

cancer, etc. She has had painful, irregular periods since she

started having them and and was on BCP's for much of her life (she's

26 now). She stopped taking them 6 months ago when she was fighting

yeast and bacteria that she believed was causing urinary problems

that seemed like interstitial cystitis because she found out how bad

they are for estrogen dominance, yeast, etc. Of course, the periods

have gotten more painful and she has had very irregular bleeding

since, but the GYN's can't find anything wrong.

Thanks for caring. Any input is really appreciated.

Betsy

> Due to your daughters abdominal pain I would recommend she is

> referred to a gynae asap....particular attention should be made re

> cysts, adhesions and Endometriosis - as the symptoms she is

> experiencing are similar.

>

> Endo for example is oftern misdiagnosed as kidney, bladder and IBS

> problems rather than the correct diagnosis.

> For further information you may wish to look at the

www.endo.org.uk

> site to compare info in more depth.

>

> cheeres

> Lee

>

>

[Guest guest]

Sounds like she has been having a really difficult time Betsy - I

really feel for her. I'm sure the gynaes have tried but I have herd

of endo - and other conditions being missed - even with a lap. It

has taken some sufferers up to 10 years in sometime 2-3 diagnostic

laps to discover the truth - unless the surgeon is an endo specialist

it still runs the risk of evading detection.

Whatever is the cause of her problems though I hope she comes to a

diagnosis shortly - I know myself that even although they cannot

actually resolve the problem and remove the pain, having the

condition identified is in itself a relief. You can then move onto

the more productive efforts of dealing with the condition and making

your life as pleasurable as possible.

It may even be worthwhile asking if your daughter could trial a

testosterone based hormone theraphy such as Danazol or Gestrinone

which would not cause the increased oestrogen levels - I found these

drugs very helpful in controlling pain...they do have rather nasty

side effects however so advice is always required.

All the best to you both and don't give up trying to find an answer.

cheers

Lee

> > Due to your daughters abdominal pain I would recommend she is

> > referred to a gynae asap....particular attention should be made

re

> > cysts, adhesions and Endometriosis - as the symptoms she is

> > experiencing are similar.

> >

> > Endo for example is oftern misdiagnosed as kidney, bladder and

IBS

> > problems rather than the correct diagnosis.

> > For further information you may wish to look at the

> www.endo.org.uk

> > site to compare info in more depth.

> >

> > cheeres

> > Lee

> >

> >