A hard diagnosis
@nela13 (55702)
Portugal
March 13, 2019 11:57am CST
Today I haven't been around here as I went with my mom to a new doctor. She has been suffering pains in her bladder for almost a year now and all her medical exams are normal, the ultrasound showed that everything is ok with her bladder, her urine analyzes are normal with no signs of blood, she even did a special exam to check If there were tumors, thank God everything is well.
But as she has lots of pain when she wants to go to the bathroom, I decided to go with her to see a famous urologist here. The diagnosis is no good
It seems my mother has Interstitial cystitis, also called painful bladder syndrome, a chronic disease.
It has treatment but only in a distant public hospital, the one in my city do no treat this disease, the treatment Is done with botox injections in her bladder.
The doctor told us that this disease don't kill but will limit her life a lot without treatment.
We have two options: she wait to be called to receive treatment in a public hospital and this may take maybe 2 years waiting or she do It in a private one and It has the cost of 1900€. She will need to make the treatment every year.
She cried a lot as she was expecting something easier to treat, It was the first time we heard about this disease.
Do you know anyone who has this?
It seems my mother has Interstitial cystitis, also called painful bladder syndrome, a chronic disease.
It has treatment but only in a distant public hospital, the one in my city do no treat this disease, the treatment Is done with botox injections in her bladder.
The doctor told us that this disease don't kill but will limit her life a lot without treatment.
We have two options: she wait to be called to receive treatment in a public hospital and this may take maybe 2 years waiting or she do It in a private one and It has the cost of 1900€. She will need to make the treatment every year.
She cried a lot as she was expecting something easier to treat, It was the first time we heard about this disease.
Do you know anyone who has this?31 people like this
28 responses
@topffer (42156)
• France
13 Mar 19
No, if they took 1 year to diagnose it, I suppose that it is not a common disease. It is not bad, it is diagnosed after an average 7.5 years in France
. 2 years to wait for a public hospital
? I guess they consider that there is no emergency... Do you read French ? Here a link to the medical therapy of this disease. They tell that botox gave promising results... needing to be confirmed. I would take some time before making a decision. And probably consult another specialist now that it is diagnosed. 2 advice are better than 1.
. 2 years to wait for a public hospital? I guess they consider that there is no emergency... Do you read French ? Here a link to the medical therapy of this disease. They tell that botox gave promising results... needing to be confirmed. I would take some time before making a decision. And probably consult another specialist now that it is diagnosed. 2 advice are better than 1.
Il n’existe pas encore de traitement curatif. Cela dit, plusieurs médicaments et traitements peuvent être proposés pour soulager les symptômes. Il faut savoir qu’il existe encore peu de données sur l’efficacité de ces traitements et que bon nombre d’entre
6 people like this
@CarolDM (203454)
• Nashville, Tennessee
13 Mar 19
@nela13 No, this was years ago when the urologist would use IV meds. Never heard of botox for this. There are many articles online you can read. This is a trusted website I often read. It gives lots of information.
Read about interstitial cystitis (IC or inflammation of the bladder) causes, symptoms, and treatment.
3 people like this
@lovinangelsinstead21 (36850)
• Pamplona, Spain
14 Mar 19
All best wishes going out to your Mom for her to be alleviated of that condtiion.
Does it have flare ups and that is a very long time to have to wait also.
Hope you get to find a good solution for your Mom bless her.
3 people like this
@lovinangelsinstead21 (36850)
• Pamplona, Spain
14 Mar 19
@nela13
Could there be someone here in Spain that would treat her?
I mean she might well qualify for treatment somewhere I am not sure where but other people come from other countries far and wide to be treated and get cured too hoping this would be the case for you Mom.
Not sure where you could find out really but I am sure that there must be someone a Doctor I mean.
3 people like this
@nela13 (55702)
• Portugal
14 Mar 19
@lovinangelsinstead21 Yesterday all her papers were sent to the hospital that treat this disease, I hope they accept her besides the long wait.
As we belong the the european community i don't know if we have access to health care in other european countries. i know we have when we are travelling.
3 people like this
@snowy22315 (169602)
• United States
14 Mar 19
I never heard of it actually. Those are some poor choices. Can they give her something to ease the pain..if she wants to wait for treatment?
3 people like this
@FayeHazel (40248)
• United States
14 Mar 19
I'm happy it's not life threatening but I'm sorry that the treatment is difficult and expensive. I think your mom should do the treatment right away... even fi it is expensive. Health is worth a lot.
3 people like this
@nela13 (55702)
• Portugal
14 Mar 19
@FayeHazel yes, that is extremely important right now.
3 people like this
@FayeHazel (40248)
• United States
14 Mar 19
@nela13 I hope you find a good insurance
3 people like this
@janethwayne (5193)
• Philippines
14 Mar 19
That is bad to hear and sad for her but did the doctor give her some medicine to take?I am not really familiar about this kind but I wish her well.
3 people like this
@nela13 (55702)
• Portugal
14 Mar 19
@janethwayne I have been thinking about it but I need to search first.
3 people like this
@janethwayne (5193)
• Philippines
14 Mar 19
@nela13 There are herbal pills that can help to heal serious problems maybe she can also try but ask the doctor first.
3 people like this
@LowRiderX (22907)
• Serbia
14 Mar 19
Oh God, constantly some problems, just that we are not calm. I just saw what you wrote, I was not very active on the site in last two days. And I've been the last two days non stop with my mom, tomorrow will be finished results. Same, the bladder pain (urinary canal) and there is blood in the urine.
2 people like this
@nela13 (55702)
• Portugal
14 Mar 19
@LowRiderX I am happy for your mom, it is so good when things are simple.
My mother felt better today, the pain is not permanent and if she drinks lots of water and goes to the bathroom frequently she may reduce the pain greatly but that makes her staying at home.
1 person likes this
@LowRiderX (22907)
• Serbia
14 Mar 19
@nela13 We got results today, nothing seriously thanks to God, it's cold, it has inflammation of the bladder and has some bacteria (escherichia coli) The antibiotic that drinks helps her. Did you find out something new about this problem with your mom?
1 person likes this
@KrauseHome (36448)
• United States
13 Mar 19
No have never heard of this. Sad that it took so long to figure out what the issue is, and that there is no one around there to help treat it. My thoughts and prayers for your Mom
2 people like this
@lookatdesktop (27129)
• Dallas, Texas
14 Mar 19
I hope your mom gets better. I am sorry that you have to wait so long and that it costs so much to treat.
2 people like this
@acelawrites (19273)
• Philippines
13 Mar 19
I don't know about that disease. But you can research on alternative means to alleviate the pain while you are still waiting for the hospital treatment. I hope your Mom will be fine soon.
2 people like this
