Can't decide which is worse: flare or doc

[Sarilou99]

I was diagnosed about a year ago after a lot of pain and work with my 3 docs and they all agreed that I had IC. I moved in May and gave the university medical staff my info including the notes from my docs with their diagnosis. Well,
about 3 weeks ago I started with the same pain that put me in the ER a year ago. I went to the center saying that I have IC and this is familiar pain- just wanted painkillers since mine were running low. I understand they have to cover all bases and rule out my appendicitis, but it took a second doctor to agree that I had IC. I was crying by the time he was doing the internal ultrasound I was in so much pain. Now I am still having pain, so I went back today. They checked me for a bladdar infection [neg] to "make sure that IC was an option" and told me that I have a nerve outta whack in my abdomen. So, I am going to PT. To top this all off, I am having panic attacks!
I am very hurt (physically and emotionally),tired, and feel the need to cry. I am in pain and it seems that they don't belive me. They suggested a laprosocopy and going back on Elmiron. I cannot afford either one, being a college student. Luckily, I am getting support from my teachers who are understanding about my absences, and my family is great. Despite all this, I feel alone and frustrated like noone understands what I'm going through. Thanks for letting me rant, looks like the tears came after all.

[KristaM]

Thats terrible... I'm so sorry that you are having to go through this. It is bad enough to have this disease in the first place let alone having to explain yourself. Can you call your original doctor that diagnosed you? Maybe he/she can send a perscription to your family or they could talk to someone in the clinic at your college. I wish I could help you out in some way.. Best of luck!
Krista

[jibbajabba317]

HI,
I KNOW WHAT YOU MEAN,AND I FEEL FOR YOU.JUST WANTED TO LET YOU KNOW WHEN YOU FEEL ALL ALONE PUT YOUR FAITH IN GOD WITH HIM YOU ARE NOT ALONE,HE HAS TRULY BLESSED MY LIFE AND WHEN I NEED COMFORT I TURN TO HIM AND HE DOES COMFORT ME.

GOD BLESS :pray: WORKS MIRACLES

[tigger_gal]

(((((((hugs))))))... I am so sorry things are bad for you.. have you checked out our low income boards..... I hope this suggestion helps..
hugs
Brat

[Sarojini]

I am really sorry this is happening to you. I think the suggestion about getting in touch with the doctor who diagnosed you is a good one. It's possible he/she can call in a prescription for you, or one that your family may be able to pick up and bring to you. At least then you wouldn't have to spend all this time doing useless things in the ER with docs who make you feel terrible about yourself ... I am so sorry you are going through this :grouphug: :grouphug: :grouphug:

[Sarilou99]

Thanks so much for listening. Things have just exploded and it seems that it will never settle down, but I know they will- they did before. I talked to my family and they are willing to help out where they can. I will try and contact all my previous docs to get records, looks like the only way to get all my ducks in a row.

Thank the heavens for weekends!

[XoChelsey03Xo]

I am so sorry about all of this. I hope that things get much better for you soon!!! :) Chelsey

[JessicainArkans]

Your story was like looking into my own life, P.S. I hate this chapter!!
I have Doc's that refuse to help me with pain control, I had the newest bladder cocktail installation last Monday & have really paid for it, I have gotten dressed one time this week, that was last night at 6:30 pm to watch a bunch of Hill- Billies duke it out at the Toughman Contest, I did actually enjoy it, some one punching the lights outta' some one else, I wish they would have put me in the ring with my Uro!!!
My Hubby went to a Doc's appointment with me after the Uro would NOT prescibe any pain meds after doing his very painful therapy, My Hubby chewed the Doc out!! The nurse got to hear the worst of it from both him and me, I thought the cops would show up after all my Hubby said he was going to do to the Uro!! The Uro got what was coming!!
I went to my PCP and cried my eyes out and told him I was worth only a hole in the ground and the coffin to put me in, I told him of the new Drug guidelines and he still was nervous about giving out any pain management... finally Hubby got real tough and told the Doc he would drag every last Doc to court if they did not help me, the Doc kinda jumped at his script book and started writing out pain meds for someone who deserves them, we out here suffering with IC are not Drug seekers, we are Mom's,wives, sisters and daughters you suffer a whole He&* of a lot and do not get the treatments we desearve because the Docs are afraid of the DEA!! b( got that off my chest!! WHEW!!).
I hope you are feeling much better and with time they can help you and I both!!!
God bless,
JessicainArkansas

[VickiB]

Wow,...Way to go Jessica! And a big gold star for that hubby of yours!

Vicki

[Myli]

/comfort
/hug

It is very saddening to hear of such things happening in this day. It doesn't speak well for medical practioners, that some are so totally ignorant. The only thing that occurs to me is the one of fear of the law. Or perhaps, the almighty bottom line. If the university started treating IC, maybe it would increase the costs there. Either is an ugly thing to contemplate as the reason behind their actions.

No one should have to go through this. It is wonderful that your family will help as much as they can. Do you have any insurance coverage at all? Perhaps it would have online prescription services? Attending college shouldn't preclude you getting the medical attention you need. I hope something can be worked out for you.

Ranting and tears sound very appropriate responses to this egregious situation.

/hugs :grouphug:
Myli

[jibbajabba317]

Jessica,
Good for you and your hubby,sometimes you just need to freak out,so some one hears you...lol.Maybe who-ever is controlling these drug scrips on how many and what you can take need to go through this ic there selves,I mean when they already know what we need them for a disease we have,not some kind of high or for the fun of it..better yet lets put them in a ring{Tough-Man Good ol Fashion Kuntry Butt Whoopin**..Glad you Hubby spoke up for you..........Way to GO !
.........................God Bless

[andcohen]

:headbang: IT DOES MAKE YOU SO ANGRY & HURT THAT DRS & MEDICAL STAFF MOST OF THE TIME HAVE NO IDEA ABOUT IC!!!!! I MEEN WITH ALL THE BREAK THROUGHS IN THE MEDICAL WORD IT'S SO HARD TO BELIVE THAT THE BLADDER IS SO HARD TO TREAT OR IGNORED & UNHEARD OF. WHAT DO WE HAVE TO DO TO GET THE WORD OF IC OUT THERE? HERE IN AUSTRALIA IT'S EVEN WORSE I THINK. WE ALL HAVE TO LEARN TO BE STRONG & STAND OUR GROUND, OTHERWISE NOBODY WILL HERE US.
ANDREA :help:

[Sarojini]

:woohoo: :woohoo:

Jessica, I am so glad your hubby helped you fight for pain control. My husband used to do the same for me with my old uro -- he was a bit iffy about prescribing pain control too and once my husband went in there and told him exactly what I went thru all day, that I wasn't making ANY of it up, and that he had better do something to help me. :) It DOES help to have the husband go with you, esp. if he is supportive... I think just having someone else confirm your suffering helps, but it really is a sad state of affairs that ANYONE WOULD NEED SOMEONE TO CONFIRM that they are in pain.

This whole issue makes me quite angry and I am in the midst of trying to figure out what the best course of action is regarding it... should I become an activist, should I write to congress, etc?? :)

Anyway, I am happy to report that my new wonderful uro is good about pain control; I am lucky that she works closely with Dr. Daniel Brookoff (a pelvic pain specialist quoted many times on the ICN & ICA) and I feel confident that my pain will always be addressed appropriately now.

However, I feel for all of you out there suffering needlessly, hence my desire to become active somehow in getting the word out that IC is an extremely painful disease in some cases and that patients deserve appropriate pain control....

:)