Need advice ?!?!? Whats the best way to handle this ??

[crkshnks79]

I posted a thread earlier explaining that I called my urogyn , because Im in a major flare and ran out of pain meds . I got ahold of the nurse and explained this to her and also told her that I have a MAJOR reproductive infection ( non std related ) which is making my pain a 100 times worse ....she told me " no to count on it " but that she talk to the doctor when he gets in , in the afternoon and call me back . No I just got back from my gyn and PID was confirmed , my pelvic exam was excruciating and now my pain level went from a 6 to a 10. It feels as though someone is manually trying to pop my bladder , I have some serious retention , burning , spasms and my insides feel as though they are being worked over by a jackhammer :cussing: My gyn gave me a script to go to the ER for a antibiotic shot I need to get which they dont have in the office .

SO heres where I need advice ....

1) Should I just go to the ER w my script and bring w me my IC diagnosis papers and explain to them that Im in a flare and horrible pain ? Cross my fingers that they help w my pain manangment ??

2) Go to the Er and not tell them about the PID and have them treat me in general ?? because Im wondering if I go there and tell them whats wrong w me they'll say "well your doc didnt think it was necessary for you to have pain meds , so we cant help you "? Because then Im screwed !!

3)Wait for my urogyn to call back , who just got out of surgery and is just now seeing his other patients , and see if he can prescribe something for me ?

Please !! Help !!! I cant take this !!! and I dont know what my best option is ?!?!?!? Im in so much pain , I just want it to stop !!!!

[crkshnks79]

I just called the urogyn office again in tears begging them to have him call me back cause I dont know what to do ??!?!?!?! The office lady said that shell give him the message as soon as she can and tell him to call me back , Should I just wait and see what he says ? Even if it takes a awhile ??

[SandyRN]

Better yet, if they say no over the phone you get an emergency appt with the doctor and tell him in person so he sees those tears. It's always better than a phone call. I hope it doesn't come to that....Good luck! I know you're suffering. I've had PID before and it is agonizing on it's own!

Hugs, Sandy

[crkshnks79]

I asked about an emergency appt and they told me the earliest that he had was next week !!!! If he doesnt call me back tonight Im going to call again tomorrow and ask again to be seen , but he isnt there on tuesdays , so Id still have to wait til weds if he doesnt call me anything in !! Once you had PID , did it keep coming back ? this is the second time Ive had it since March 08 , and my gyn told me me that its likely Ill keep on getting it from now on ?? Thank you for your help !!!

[SandyRN]

I only had it once, so maybe I was lucky, but I don't think that's necessarily true that it will always keep coming back. I hate to tell you to go to the ER because we all know what that's like but if it comes down to it take someone with you, take your prescription with you and any documentation you have that says you have IC. Then you cry, beg, fall on the floor, whatever you need to do to get a doctor to help you. If the doc there doesn't help you or dismisses you as a drug seeker don't leave, sit there and ask for a patient advocate or the nursing supervisor. They are there round the clock and they are there for situations just like this. Don't let them send you out of there with no relief.

My fingers are really crossed for you....but it's all in what you feel comfortable with. If you can hang on til Wed then demand to be fit in on Wed and tell them how sick you are.

I know this isn't a short term help here, but have you seen a pain mgmt doc? Forgive me for not knowing the whole situation but I'm not caught up with my reading yet.

I am so tired of reading how members are mistreated when they really need pain medications. It's not like we're junkies looking for a fix, we just truly need help and I wish more doctors could understand that.

I hope things work out for you!!!!!

Hugs, Sandy

[crkshnks79]

I only had it once, so maybe I was lucky, but I don't think that's necessarily true that it will always keep coming back. I hate to tell you to go to the ER because we all know what that's like but if it comes down to it take someone with you, take your prescription with you and any documentation you have that says you have IC. Then you cry, beg, fall on the floor, whatever you need to do to get a doctor to help you. If the doc there doesn't help you or dismisses you as a drug seeker don't leave, sit there and ask for a patient advocate or the nursing supervisor. They are there round the clock and they are there for situations just like this. Don't let them send you out of there with no relief.

My fingers are really crossed for you....but it's all in what you feel comfortable with. If you can hang on til Wed then demand to be fit in on Wed and tell them how sick you are.

I know this isn't a short term help here, but have you seen a pain mgmt doc? Forgive me for not knowing the whole situation but I'm not caught up with my reading yet.

I am so tired of reading how members are mistreated when they really need pain medications. It's not like we're junkies looking for a fix, we just truly need help and I wish more doctors could understand that.

I hope things work out for you!!!!!

Hugs, Sandy

Im going to wait to see if my urogyn calls and if he can call me in something even if its til I can get in to see him . IF he cant or wont , then Im going to the er w my IC paperwork and explain it to them . I didnt know that you can do that if your denied at the hospital ?? Thats a great idea !! Cause honestly if they rejected me , I think Id lose it ... I ALWAYS HAVE PAIN Especially on my left side , but when I in a flare it goes into hyper drive and I can do anything but wish I didnt exist because the pain gets too bad .

I have seen on pain mngt doc and he told me that because there is no diagnostic proof that anything is wrong w me , that its in my head and that he wont help me .... Now my urogyn mentioned a pelvic pain specialist out in Allentown , PA but thats 2 hours away from me !! Lisa , suggested another doc who does pain mngt and is only a half an hour from me . I called them today and I have to get all my paperwork faxed over to them , then the docs review it AND THEN they call me back to make an appt . So Im going to mention that to my ic doc next time Im in the office .

I know theres a ton of posts for you guys to read , no need to apologize !! Ive been going through severe chronic pelvic pain for 4 yrs and it just keeps getting worse . No docs believed me , told me it was in my head , or that I was seeking drugs that wont help me . Ive had mutiple exploratory surgeries to try to figure it out , of course nothing showed up . I found this site and went to my old uro w it and he told me "yes , you sound like you have IC , but IC doesnt cause that type of pain , its probably just your ovarian cysts " ( which I have all the time , I get complex cysts , so even tho they burst , they never really go away because they are so many lil cysts , inside one big cyst ) ANyway , I seeked out a urogyn , thanks to someones advic on here , got my primary to refer me and the urogyn that I see was the first doctor in 4 yrs who took me seriously , actually listened to me and is very nice . He did give me a prescription for 40 oxycodone on my first visit , after he saw how much pain a simple pelvic exam and cathe caused me . I just ran out of those yesterday , I shouldve have called before I ran out , but I was so afraid that if I asked he wouldnt be nice to me anymore ... pathetic I know . I have no reason to believe he would act like that , but after so many years and so many doctors being jerks to me , I get very nervous to ask for help when it comes to pain meds ....So Im praying that he will help me again even if it only a lil til get me through before he has to refer me to pain managment ..

Sandy , thank you so much , for all your help and listening to me !!! I truly , truly appreciate it !!!

Lauren

[Mothergoose]

If your Dr. office is not to far away I would go and ask in person to be seen. I would say I will wait as long as I have wait to be seen. Then sit, where the recep can see you, prefferably where the Dr. can see you too if he comes out. From what I have read on other peoples posts It seem like if you go to ER, they may lablel you as a drug seeker. His office should have app saved for people who need to be seen that day.

Sorry you are haveing so much problems and are in so much pain, I think if you can't get help at Dr. office you don't really have any choice but to go to the ER. You could go to the ER for your AB shot (you need this anyways)and feel out how they seem, you know you can sometimes tell they are going to say no before you ask, and see how things go.

Hopping for better times for you Mothergoose

[Claredale]

Definitely, I would show up and make sure they knew I was in pain. I remember years ago having a migraine and I had never had one before, but I knew what my grandmother went through with them. I called my PCP and was told they didn't have any appts available so I would need to go to the ER if they were that bad. I was newly married and didn't want to pay that co-pay and wait for hours, so I drove myself down to the office. I was so sick I had my face as close the the window as possible to feel the coolness. When I got there, I was as white as a sheet and they rushed me to the back where I got sick big time. They immediately put me in a room and gave me shots.

[waterflow]

I would go to the office and ask to see him. If need be sit in the waiting room crying and I bet they get you in fast. I did this last year. Not that I needed to get in fast. I was there for my appointment but was having a really bad day and just coudln't stop crying. Guess they didn't want me out there crying with all the other patients so they took me in right then and there. Hoping you get some help soon. I know how it goes at the ER too. I for one would only go if it were life or death for me since they have never once helped me each time I went.

[BrittanysDance]

:confused: I'm confused.... you're seeing a urogyno AND a gyno? If your gyno diagnosed PID then your urogyno certainly knows how this condition works and how painful it is and how it affects the bladder (and can infect the bladder as well....). I'm not understanding how your gyno just didnt RX pain meds for you to begin with ?? You should be having both of these doctors working together given IC can be classified or is being classified more and more into the realm with pelvic issues more or less, especially if you have pelvic floor disfuction (I dont know if you do, but most IC patients do) and PFD falls into the realm of gyno related; but IC is def. uro related = urogyno should be able to take care of PID AND IC. I dont understand how your urogyno and gyno both wouldnt know about your IC - or why you would have to provide papers proving your diagnosis to either...:confused:

I do hope you are able to get some relief soon and feel better, however I do think you need to find a pain management doctor that can better assist you, or at a minimum, a better uro who is willing to in the interim.

Lots of hugs,
Brittany

[crkshnks79]

:confused: I'm confused.... you're seeing a urogyno AND a gyno? If your gyno diagnosed PID then your urogyno certainly knows how this condition works and how painful it is and how it affects the bladder (and can infect the bladder as well....). I'm not understanding how your gyno just didnt RX pain meds for you to begin with ?? You should be having both of these doctors working together given IC can be classified or is being classified more and more into the realm with pelvic issues more or less, especially if you have pelvic floor disfuction (I dont know if you do, but most IC patients do) and PFD falls into the realm of gyno related; but IC is def. uro related = urogyno should be able to take care of PID AND IC. I dont understand how your urogyno and gyno both wouldnt know about your IC - or why you would have to provide papers proving your diagnosis to either...:confused:

I do hope you are able to get some relief soon and feel better, however I do think you need to find a pain management doctor that can better assist you, or at a minimum, a better uro who is willing to in the interim.

Lots of hugs,
Brittany

Hey Brittany , yes I am seeing both because my UROGYN tells me he more on the URO side then the Gyn and I guess he prefers to treat just URO ? I know ...that one made no damn sense to me either ( and yes I have PFD and Im currently doing pt for it ) When I got a hold of my urogyn's nurse (apparently he doesnt do call backs he has his nurse do it )and told her that I was in horrific pain and thought I had PID she told me " well then you need to call your GYN , not us " Um , huh ?!! That ****** me off and then on top of that I told her that either way Im ALSO in the middle of a terrible flare , which her response was " Well theres nothing we can do for you , he wont give you pain meds , go to your GYN and get treatment for your infection and your pain will go away " I told her I did and that it got worse and between that and my IC that I can barely move , so that I was going to the ER . She asked me why (I thought that one would be freaking obvious :headbang:)? I said because I cant handle the pain anymore , her reply was " well antibiotics treat the infection , not pain meds " At that point I gave up trying to explain which was what I thought BLARINGLY OBVIOUS !!! And I gave up asking her or my urogyn for help , and just hung up . Honestly , I never got to talk to the actual doctor , just his nurse who is very inpersonable and not compassionate in the least . The doctor on the other hand is usually very nice , so Im not sure if it was just her or not ??

My Gyn didnt rx pain meds because they just dont do that , even tho he watched me practically jump off the table during my pelvic exam and then hobble out of the office in pain , he only gave me antibiotics and told me to go to the ER for a shot in my butt. I am currently looking for a new gyn . I dont know why they are not working together . I told my urogyn that the regular gyn and myself dont get along , and she blows me off about everything , so maybe thats why ...

As for the diagnosis papers , I meant take them to the ER with me so that they know I had a chronic pain condition of the pelvis , hoping that they would understand that all of this going on around there was truly hurting me . Surprisingly enough though , the ER was the best place for me !! The doctor I had there was amazingly caring :angel: !! Withing 10 mins of me getting to the Er she had me hooked up to IV and was giving me antibiotics and PAIN MEDS ( Thank you doc and GOD !!!!) did a battery of tests that neither one of my docs did and held my hand and told me that she would take care of me and for me to try to get some rest now that Im not in so much pain ( :bow:) She asked me if I wanted to be admitted for pain control or would I be more comfortable to sleep at home if she gave me pain meds and anitbiotics to take w me . I told her I would sleep better at home so she discharged me w doxycycline , flagyl and 30 ( yes 30 !!) percocet .

Bottom line is my urogyn wouldnt help w the ic flare and doesnt want to handle gyn related issues just uro ones . My gyn doesnt ever think people need pain meds , regardless of what condition the patient has , and does the bare minimum of anything every time . I just started seeing this urogyn and he was very nice to me , so maybe I should make sure if it was his cranky nurse talking or actually him ... ? Either way Im ****** that my urogyn wouldnt help w my flare , I tried to make a emergency sick appt w him but the office lady told me he had nothing til next week . I see him monday for an in office cysto that he wants to do before I start my rescue instills , I want to talk to him about what the hell am I supposed to do if Im in a raging flare and cant get into to see him ?!?!? Bottom line is I have :cussing: luck w doctors in general ... I hope this made things a lil more understandable for you . Tahnk you for your concern , you brought up alot of good points that I need to talk about w my doctors , the last few days I have been in so much pain I couldnt think straight enough to figure anything out . Any advice you have on all this or suggestions , would be GREATLY appreciated !! I hope you doing well , take care :)

[Briza]

Lauren,
It's good to hear you had a good ER experience. I did, too, the one time I went to the ER for bladder issues last fall. I was having retention, couldn't pee, lots of pain. I was really surprised, the ER dr said, "yes, IC can be difficult," and that he even knew what it was I was impressed. The whole process was so much better than I expected...w/in 10 mins of arriving I was admitted, cathed, offered pain meds, and the ER dr spoke w/ my gyn, who handles my IC stuff. I declined the pain meds because I had my own and wanted to wait til I got home to take them. Anyway, I was in and out in about an hour. :)
Anyway, I'm glad you had a good ER experience and posted about it because there seems to be many posts about bad ER experiences w/ IC, but not too many good ones!

[BrittanysDance]

Hi Lauren,

I'm so glad the ER dr helped you on this and gave you proper treatment in the interim. Its so frustrating when you have TWO doctors that refuse to help you and treat the disease, let alone the infection. I'd try to find another gyno if possible - and uro if you can as well because from the sounds of it, neither one of them are doing very much IMO. I just dont understand why someone who spent years getting double certified would say "oh..I dont do the gyno side of things..." I could understand if it were the obstetrics part of it..but you dont spend extra years becoming double certified to NOT know both "trades" so to speak. Infuritating....:cussing: I hate doctors like that - I'm so sorry you've been through this. *biggest hugs to you*

I'd see if the ER doctor can recommend anyone that specializes in PFD and IC. I dont know if that particular doctor works in thier own practice or if it was just a PA or the resident, but it'd be worth asking. Look on your papers and see the name of the dr, its usually there. You should be able to call up there and leave a msg, something to the affect of "this dr. treated me in the ER and was so wonderful..knew so much about my condition, etc...and I'm wondering if you could pass along my name/number to him/her because I've been trying to find a doctor that knows alot about my conditions. I'm hoping that Dr. ____ may know someone or can recommend who I may go to.?" Its worth a try...

Rest up and feel better soon! I'm sooooo glad you got some relief and treatment!

Hugs
Brittany

[Mothergoose]

Just wanted to say glad it went well for you, but you know it is a sad state that ICer's have to debate and weight the pros and cons of going to the ER when we need help for fear of how we will be treated. Were sick, we won't go if we didn't need help gods know we go to the Dr. often enough we would not go to pass the time of day. If you broke your arm you wouldn't think twice about going, but you can't stand up, or maybe walk, or maybe pee from pain and were torn whether go go or not, some thing is not right about this picture.

Mothergoose

[malone]

Hi-
I think it is clear you need to find 2 new doctors. From what you have said these are 2 heinous doctors --this may sound terrible but I really hope what goes around comes around! Anyway, you should probably start looking ASAP while you still have the percoset--everything is so much harder when the pain is off the charts! Good luck--Ginny

[Briza]

Just wanted to say glad it went well for you, but you know it is a sad state that ICer's have to debate and weight the pros and cons of going to the ER when we need help for fear of how we will be treated. Were sick, we won't go if we didn't need help gods know we go to the Dr. often enough we would not go to pass the time of day. If you broke your arm you wouldn't think twice about going, but you can't stand up, or maybe walk, or maybe pee from pain and were torn whether go go or not, some thing is not right about this picture.

Mothergoose

I have to agree with that. Though I did have a good ER experience, I tortured myself with worry about how I would be received and treated, if at all! I feel blessed that things went as smoothly as they did for me.

But you are so right, Mothergoose, most of us have so many drs and appts as it is, and you would think with all the doctors most of us have that they would be the ones to go to and to help us as a first line of defense...if our usual doctors are not there for us it makes it all that more difficult to make a decision to go to the ER, where we don't know know the doctors or what to expect at all, and that makes the stress of it all so much worse!

Brittany :), as always, you see the much broader picture and, I believe, have given excellent advice.

I think sometimes we have to stick with the doctors we DO have at the moment; but just like a job, it is better to search out other doctors who may better be able to help us, but still have the doctors we currently have on the burner before breaking those ties, if y'all know what I mean.;)