A hard diagnosis

@nela13 (15263)
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?
32 people like this
29 responses
@topffer (37793)
• France
13 Mar
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.
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
@nela13 (15263)
• Portugal
13 Mar
7 years?! It is worst than here. Thank you for the link, I understand a few things, it really seems that botox is the best thing. This doctor is the best one, we trust him. We have to analyze all our options, we want her to enjoy her life.
2 people like this
@CarolDM (18900)
• United States
13 Mar
A friend had this and she got treatments and is ok now.
4 people like this
@nela13 (15263)
• Portugal
13 Mar
Really?! Were her treatments with botox?
3 people like this
@CarolDM (18900)
• United States
13 Mar
@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
@nela13 (15263)
• Portugal
13 Mar
@CarolDM with meds? Do you know which meds?
3 people like this
@Sheali (6271)
• India
13 Mar
I never heard about it and I am sorry for your mom.. Hope she feels better
4 people like this
@nela13 (15263)
• Portugal
13 Mar
This disease limits her life a lot, she rarely goes out because if she took some time to go to the bathroom she feels lots of pain.
3 people like this
@Sheali (6271)
• India
14 Mar
@nela13 That is so bad I don't know why people need to go through all this
3 people like this
@nela13 (15263)
• Portugal
14 Mar
@Sheali it is terrible living with pain.
3 people like this
• Pamplona, Spain
14 Mar
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
@nela13 (15263)
• Portugal
14 Mar
Thank you, she is getting more pain as time passes and now we must consider all the options as it is a long waiting for someone who is in pain.
3 people like this
• Pamplona, Spain
14 Mar
@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 (15263)
• Portugal
14 Mar
@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
@LadyDuck (208199)
• Switzerland
14 Mar
Oh my goodness, I am so sorry for your mom. Can you start with a paying treatment and in the meantime ask to be called to receive the treatment in a public hospital?
3 people like this
@nela13 (15263)
• Portugal
14 Mar
That is what we want her to do but first we must find a good health insurance for her. She is in hope that it won't take that long but if so it is a long wait for someone that is in pain.
3 people like this
@LadyDuck (208199)
• Switzerland
14 Mar
@nela13 When you are in pain waiting is not a solution.
3 people like this
@nela13 (15263)
• Portugal
14 Mar
@LadyDuck the pains come and go but everyday she has it.
3 people like this
@Corbin5 (134447)
• United States
13 Mar
I do not know anyone who has this, and I am so sorry your mother is suffering from this.
3 people like this
@nela13 (15263)
• Portugal
13 Mar
Sometimes it is very hard and she avoid going out as she may not have a bathroom near if she needs it.
3 people like this
@Corbin5 (134447)
• United States
13 Mar
@nela13 Yes, that would make her life more difficult.
2 people like this
@nela13 (15263)
• Portugal
13 Mar
@Corbin5 And she end up suffering even more
3 people like this
@Nevena83 (17878)
• Serbia
13 Mar
I am very sorry that this is happening to your mother. I've never heard of a disease. 1900 is a lot of money, I wish there was a better solution for her.
3 people like this
@nela13 (15263)
• Portugal
13 Mar
It is a lot of money for us but 2 years Is a long wait for someone that Is feeling pain
3 people like this
@Nevena83 (17878)
• Serbia
15 Mar
@nela13 Yes, you're right, that's a lot of time.
1 person likes this
@nela13 (15263)
• Portugal
15 Mar
@Nevena83 we are looking for an insurance that may help with the costs.
1 person likes this
@FayeHazel (25955)
• United States
14 Mar
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 (15263)
• Portugal
14 Mar
I need to convince her, she thinks it won't take that long to be call but meanwhile we are looking for a health insurance for her.
3 people like this
@FayeHazel (25955)
• United States
14 Mar
@nela13 I hope you find a good insurance
3 people like this
@nela13 (15263)
• Portugal
14 Mar
@FayeHazel yes, that is extremely important right now.
3 people like this
@janethwayne (2608)
14 Mar
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 (15263)
• Portugal
14 Mar
It seems that pills aren't effective to control the pain but we need to find a solution for her.
2 people like this
14 Mar
@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
@nela13 (15263)
• Portugal
14 Mar
@janethwayne I have been thinking about it but I need to search first.
3 people like this
@shaggin (43228)
• United States
14 Mar
Oh my gosh that is awful news. It could be worse but it still is awful! A huge cost or a long wait while being in pain the whole time how sad!
3 people like this
@nela13 (15263)
• Portugal
14 Mar
yes, it is awful living with pain, we are searching for a solution as soon as possible.
3 people like this
@snowy22315 (62701)
• United States
14 Mar
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
@nela13 (15263)
• Portugal
14 Mar
it seems it is difficult to alliviate the pain with meds and it is a long wait for someone who is in pain.
2 people like this
@sofssu (22879)
14 Mar
I am so sorry to hear this, the pain must be awful. Your poor mom must be suffering a lot. I hope she gets some help soon.
3 people like this
@nela13 (15263)
• Portugal
14 Mar
I hope too, it is terrible living with pain.
2 people like this
@amadeo (87388)
• United States
13 Mar
Never heard of this and so sorry.I do hope she get some relief there.
3 people like this
@nela13 (15263)
• Portugal
13 Mar
We won't give up, there must be something more to do to help her.
2 people like this
@jaboUK (56385)
• United Kingdom
13 Mar
That sounds like an awful disease, I'm sorry for your mother. Will you be able to raise the 1900? 2 years is a long time to wait when she's in pain.
3 people like this
@nela13 (15263)
• Portugal
13 Mar
It Is awful, 2 years is a very long time for someone who is in pain, we must search a health insurance for her and hope this surgery will be covered.
2 people like this
@maezee (36457)
• United States
13 Mar
I have never heard f this. Sorry to hear of it.
3 people like this
@nela13 (15263)
• Portugal
13 Mar
It is not a very well know disease. Thank you.
1 person likes this
@LowRiderX (4058)
• Serbia
14 Mar
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 (15263)
• Portugal
14 Mar
I am so sorry about your mom too, hope it is nothing serious and she may get help soon as well as my mom.
2 people like this
@LowRiderX (4058)
• Serbia
14 Mar
@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
@nela13 (15263)
• Portugal
14 Mar
@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
@dya80dya (12118)
• Romania
14 Mar
I am so sorry for your mother. I don't know anyone who has this.
2 people like this
@nela13 (15263)
• Portugal
15 Mar
Thank you, it seems it is not a very usual disease.
• Dallas, Texas
14 Mar
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
@nela13 (15263)
• Portugal
15 Mar
It is awful because it is not considered an urgent disease, so the waiting time is longer. The treatment in a public hospital will cost her around 100€, it is a huge difference.
1 person likes this
@KrauseHome (36062)
• United States
13 Mar
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
@nela13 (15263)
• Portugal
13 Mar
It is awful for her, she has been in pain for too long and now it seems there aren't a simple solution. Thank you for the prayers, we will need It.
1 person likes this
@acelawrites (15049)
• Philippines
13 Mar
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
@nela13 (15263)
• Portugal
13 Mar
We need to find a solution and help her to alleviate her pain.
1 person likes this