Family wants 2nd opinion

[sassiegyrl]

Hi there, I need to vent,
I have been diagnosed for several years ago with IC. My treatments have been heparin instills and meds. At first set of instills worked well and I was feeling better. then I was having flares again and started instills again and they did not work. So my Dr did a lap and removed adhesions that was aggrivating my IC. Now I am restarting the instils once every 2 weeks. The problem is my family wants me to now get a second opinion (with a urologist) after all this time to get this figured out once and for all. I have told my family that this is an on going condition. I am sure that I will feel better soon. They just don't get it. My current doctor is a GYN and has helped me with everything so far and I trust him. I have seen a urologist in the past and she found nothing. So why would I want to go though headache of seeing another doctor????:cussing:

Thanks for listening
April

[jaime15]

I'm sure your family just has your best interests at heart.
I know when I was dx'ed, my mother had a hard time with it. She kept trying to figure out what she did wrong while she was pregnant.

AND I got a second opinion because I wanted one. So if you do get one, fine. If you don't want to go through the hassel again, don't. That choice can also depend on your insurance. If you pay a percentage, that could be costly. If it's a co-pay, then you aren't out of tons more money.

Basically, if you think your Uro is good and you like him/her, do what you think is best.

I hope the instills work and you don't have to have it done as often.....take care!

[Berkshire Road]

I've had about 18 relatives in 2 countries sending me helpful articles and suggestions about "what else it could be" even while my IC treatment was working well. When I've had relapses or flares, the volume increases. It's annoying as he!! but it really is well-intentioned.

Grit your teeth and keep telling yourself they only nag because they care. Then lie and tell them you saw the uro and he confirmed your gyn's diagnosis and treatment. :)

[dyno]

It has taken years and I still don't think my mom "gets it" at times. My kids have finally come around but it didn't help with them that my now ex, their dad, told them after our divorce that the IC "was all in her head".

It just takes time for families to come around and you have to do what you are comfortable with.

[ICNDonna]

I agree. My mother always thought that if I would just see another doctor, I would get well. I finally just stopped discussing my IC with her.

Donna

[stef000]

Well i always get that from my family....
I say if you are happy with your treatment and your doctor...then just stay with it.....
if you are not and want a second opinion then go for it....
DO NOT DO THINGS JUST BECAUSE YOU FAMILY THINKS YOU SHOULD
Do whatever you want to do......
If you are happy and everything is fine with your treatment then stay the course and do that......
i hope this helps...
take care
:hi:

[mary124]

I know that my Mom had a hard time with understanding this illness, couldn't believe that I kept getting bladder infections as she called them. Finally my Sister found an article in a magazine about 10 years ago on IC and ask me was this what I had and when I said yes, she said great, I will talk to Mom about it, of course even after all of these years (its been 18) she really doesn't get it, but she is trying. ( I think its funny that when we go somewhere together which is not often as I live about 160 miles from her she will say "do you need to go to the restroom - and she will repeat that every 30 minutes or so.)

[sassiegyrl]

Thanks for the responses everyone. :smile tee I know that my family cares for me. Thanks for listening and chatting with me. It is nice to know that I am not the only one that has gone (going) through this...


April

[VickiB]

I think it's really hard for others, -'in this day and age' to grasp the concept of something that cannot be cured,....yet -(because I'm still holding out on hope!)

You need to do what you think is best.

Vicki

[maryla]

My kids and I have to say my friends as well, really do not fully understand either. My daughter who lives right in the same city that I do, doesn't even want to talk about it. I realize that, that is what she does when she gets scared. so, unless she calls and asks, I do not even bring it up. I just figure one of these days she may not be so scared and we can sit and cry together or whatever we need to do.

My son on the otherhand talks to me about it. But doesn't commit too often. My friends want me to be just like I use to be. Sometimes I think they are the most difficult to talk to. I have actually lost one friend because of my illnesses she basically told me to just get over it.

Anyway, I do what I need to do for me. If your happy with your treatment, that is all that matters.

Blessings,

[stacey79]

I second everyone's thoughts in many ways. I think our families are just trying to help by suggesting second opinions. But, it all comes down to what we're comfortable with. I have a very compassionate uro who I am thankful for. He is not, however, the most cutting edge IC doctor. That said, we've worked and found a regiment that works for me. I keep up on the research. He has even offered to refer me elsewhere if we need to, but I'm happy with my treatment right now and have been for probably the last four years.

Just a couple of weeks ago, though, my parents mentioned that if I wanted to see another uro and needed help financially they would help me. I appreciate it and know they're trying to help, but there's no point in wasting anyone's time and money right now. I'm on relatively few meds for IC and my symptoms are under control. I don't have children, yet, but I do know that when a loved one is sick all I want to do is be able to fix it. I'm guessing this is our families' solutions for us.

That said, I do have to say that I am blessed with an understanding family. I've basically had IC since I was 3. I have a family filled with women who have "sensitive bladders," so I have been blessed that they understand. Unfortunately, sometimes my parents still can treat me a bit like when I was a kid and they were in charge of my care. But, I'm still thankful for that love and care in the end.

[Katrina]

I would suspect it is possible your family is going through a grieving process of your condition and may be stuck in denial currently. Second opinions are usually considered to be a safe bet but I understand the not wanting to waist your time with the whole thing. It can be very hard for them too and they don't realize that a lot of there responses are hurtful. I don't think my family will ever really understand that they make so many choices and say so many things that hurtful regarding my health. I think if needed you can set some rules about the issue.

Sometimes family members can be helped but hearing from us what we need from them regarding this. Since that isn't the same for everyone or every situation it can just be some guidelines.


on a totally different note....have you considered doing the instillations yourself and even more often? I was doing 2 a week for a while and I know of people doing even more often than I so your current amount seems pretty low to me unless you are doing quite well. I don't see a reason to see another doctor from what your treatment plan is currently since it sounds to me like your responding to treatment and when things get worse more actions are taking. With hunner ulcer patients lazzering them off and rescue instilaltions top the list of what is most helpful!


Anyway, sometimes making some things for you family to read that explains what you want from them...why your on the path in treatment your in and why you need them to trust that your doing what is best for you can help a bit. :grouphug: