I am at the end of my rope

[Kirs10]

I am at the end of my rope. I have been in a really bad flare for about 4 weeks, and I was given a rescue instillation in the doctors office and was sent home with self cathing supplies. I did them, after finally figuring out how and they didn't help me at all if anything they made things worse. I went back to my dr's office and saw his nurse and she said that she didn't know why I was still in pain and that she thought that it was probably cysts on my one ovary, and that i needed an ultrasound. She kept telling me i looked miserable, and then said she wanted to talk to the doctor after she did her internal exam and had me crying from the pain she caused in doing that exam. She cam back into the room and told me that he wouldn't remove my last ovary and they he wanted me to begin DMSO treatments, and then they were going to send me a pain clinic. I was sent home iwth no relief. I have been taking 2 vicodin every 4 hours for pain for two weeks straight. This morning I got a phone call from the office and the nurse that was to do my DMSO treatment, called to say that she only did these on friday's and then she informed me that i need to pick the medicine up at the pharmacy and take it with me to the office. I was shocked, i wasn't told about any of this yesterday, i was under the impression that I was just going into the office and having a instillation. I have 3 children, a husband that doesn't support me emotionally, or financially, I can't afford to come up with $90 dollars every two weeks for 8 weeks. I just can't so when i told the nurse that she informed me that she would have to give my file back the nurse and let her figure something out but that she didn't think there was anything else they could do for me if I could do this treatment. So I have been told by my docotor that there isn't any thing else they can do for me basically because i haven't got them money.
I am just floored. I have never been told there isn't anything a doctor could for me, and then not gotten a referral to a doctor that could.
So I am not a real big fan of rescue instillations. They didn't do much for me and if anything made the pain worse.
I am going to look for another doctor to see in the area, but living in Maine leaves me coming up pretty short.

Thank you for letting me vent and for listening. I really need to get things off my chest and any advice would be appreciated.
Thank you
Kirsten

[vm]

Have you spoken directly with the doctor or is the nurse or receptionist relaying all this to you? Sometimes that can make a big difference. Of course, sometimes it doesn't - but I'd try speaking directly to him about the situation if you haven't been able to already. :kissing:

[ICNDonna]

I agree with Kim. I would talk personally with the doctor before making a change.

Sending warm healing thoughts,
Donna

[ShePurzz]

another post gone out into cyberspace unfinished and who knows where it will land... grins.

Hi Kirs,
How frustrating to think you are going to get treatment only to find out that the cost is keeping you from getting help. Let me suggest a couple of things you can also try, but I agree, ask to speak to the doctor.

First, when I do have my instillations, I have my doctor phone my prescription in to a pharmacy near his office, so if I do forget to pick them up on the way to my appointment, it is only a couple of blocks away to get it. They should be able to call you in a month's supply -- for however many he wants you to have -- if you have insurance, it should only cost the co-pay portion. If you don't, you may ask him if you can have fewer treatments and see if that helps you get through the flare.

My doctor does these once per week for four weeks -- however, the last time, I hurt so badly after treatment three that I never went in for treatment four -- I just phoned to say it isn't working this time -- however, it has worked well several times in the past -- so perhaps it wasn't really a flare that required this much attention -- who knows?

My point is that if it isn't covered by insurance, maybe you can get by having one weekly for a couple of weeks (maybe two or three) and that would hopefully cut down on the cost of the meds and get you through this... worth asking anyhow.

Also, ask your doctor if the company that makes this medication has a program to help people who don't have insurance, and can't afford their medications -- hopefully you could get some help that way.

I hope this is worked out for you -- and I hope that getting it vented helped too -- sometimes just writing it out is helpful...

:pray: :pray: :pray:

Be well,
Mary

[mela414]

Hi, I hope you are doing better today. I've read all the responses and you got a lot of good ideas there. Definately talk to your dr. If they are not willing to work with you then you might have to change drs. I had to do that too.
I haven't been able to do instillations either.... because like you they make it worse! I guess I am too sensitive to the meds....or could it be the IC has getten worse? who knows. I also tried DMSO......it was pretty torturous for me but I hung in there and did the series of them. They only helped for a few days after each treatment but in the long run they did not offer the longer term pain relief I was looking for.
Talk to your dr. even if it means making an appt to discuss things with him.
Take good care of yourself.

[Kirs10]

Thank you replying to me. I have tried to get an appointment with the Doctor they just don't like ot make appointments with him. I am looking into a new doctor in a differnet town because I am really at the end of my rope. I am not too sure that they will tell me anything different but i will see the doctor the first visit, so hopefully I can get a few more answers.
Thank you
Kirsten

[vm]

Your current uro's office staff doesn't like to make appointments for patients WITH the doctor?????? Do they have a nurse that meets with people instead? That would bug the crap out of me!

[Kirs10]

The nurse that see's his patients is not familiar with IC she kept telling me that i needed to have an ultrasound done, then she asked if I had a history of endometriosis, and all that info was in my file tht she never read...............I am just tired of the pain, and still haven't heard from thim since last Thursday.

Just tired......
Kirsten

[ads]

Could you call the pharmacy and see if their is any medical financial assistance for you to get the supplies?

[nostalgic48]

Dear all of my fellow IC friends,
I am determined to get this thing conquered. I do so many things that sabotage my health and the flares continue. I work full time, am working on my master's degree (thesis), have a sixteen year old son who is starting to drive, a newer boyfriend who doesn't understand my illness, and an immediate family who are basically absent from my life. They are there if I need them, but yes, we are all busy and lead our own lives. I am going to vent here because it is easier to vent to those who understand. IC is devastating. I have had it for over 24 years and personally, I am tired of it. I am tired of watching everything I put into my body. I am weak, losing stamina, and frankly, frightened by the way I feel alot of the time. I get regular checkups at the pcp's office, had my yearly pap, mamogram, bloodwork, etc. I have excellent health insurance. I am so tired of worrying about what will happen to my son if something happens to me. I am crying alot, menopausal, hurting, and need lots and lots of tlc, but who is going to give it to me? No one understands except all of you in the IC society. This website keeps me going, gives me hope, and helps me when I feel that my nights are so sleepless that I don't know what else to do. I am basically a very patient person, with an optimistic attitude. I throw myself into my career and my dreams. Sometimes I feel like it's an enormous task to just shower and get ready for work. I just really appreciate being able to write this and say how I feel.
Thanks for listening...You are all my saviours!

Ps. I made the beef stroganoff recipe in the IC Cookbook - try it, it is Delicious!!:bow:

[Bianchi]

Kirs10, I hope you get to talk to the Dr. personally. Sometimes they dont know what their employees are saying to patients. Not to give you an appt. is totally ridiculous. When and if you see him the next time , write everything down so you dont forget, and please tell him about the appt. situation.
If you dont get anywhere with him, definitely go to another Dr.
I wish you good luck. and take care.
Bianchi