Help please!!! Need advice to find a dr, Hampton roads

[Chloeclover2000]

Can someone please tell me of a good dr who knows what IC is and is willing to treat it correctly!! We are military(navy) and my dr said well what do you want me to do....the navy hospital will help as much as they can and have been wonderful, but they can only give me hydrocodone 5 mg and like 10 pills, they try their best bc they know that doesn't help so they will write it out to take 1-2 x 4hours as needed. But I won't bc I'm so scared I won't have any. I have had IC for a long time, i was at the time of being diagnosed the youngest patient my Uro had seen. I started having having trouble and tests and seeing every dr, same as everyone told I had tO have some kind of STD and it must just be a false positive ... And on and on until they finally in 2003 started thinking ok maybe it's IC and done all those tests, which of course some I was asleep for but I remember the one clear as a bell, like it was yesterday, and pray I never have to do it again, the one they do in the Office and they inject stuff well for some reason the numbing did not work and I don't know why but having a cath put in and it being in causes me such horrible pain, like horrific... That and having provide and when they have to press on my lOwer abdomen...I try my best to either turn my head, hOld my breath or cover m face sOme, so they don't think I'm a baby but having those done will instantly before I can stop it have tears going down my face...so I tried all the medicines, been through it all.... I hated it bc I would get my hopes up and be crushed... Nothing has helped and I do btw watch what I eat bc I know what triggers mine... I don't dare drink,..and I know for me stress and movIng around or doing alot is my biggest triggers, also traveling which is hard since we are military. So I've tried everything... Even have the interstim placed... Was put in 2004...since day 1 have had trouble but didn't give up for a long time on it bc I had thought from what my Uro said it was the fix not only for my urgency & frequency but my pain also...I couldn't wait... I have always had shocks down my right leg... My toes began to curl under after so long... Even when I could get him to stay in the room long enough he would just adjust it and say try that for a month... It did help on bad flares with the really bad burning/pressure but that's it and I'd have it turned up so high that I couldn't bend my right leg to walk. It's now turned off bc I bent over one day to get a box of baby cereal off a bottom shelf and I felt something pull out from my spine area where they are at... And instantly it was such pain I couldn't move it was shocking my left leg and moved to the whole left side of my body.. Called Uro told to make appt asap as soon as holidays was over(this past christmas) so when I called they said I could come in march 30.. I was like seriously!??? No thanks. Btw the Uro who put it in is in WV where I'm from.... So anyhow Portsmouth Uro said they wont even touch me with the interstim and referred me out to civilian Uro.... So I prayed that god please let this be the one that will understand and help me... Bc honest to goodness I swear I feel like I am in a 24/7 severe flare...the hydrocodone does help enough that most of the time if it's not real bad( like after a pelvic or if someone has pushed on my lower abdomen that I can lay in bed without crying.... So please dont get me wrong I'm so grateful to the military hospital(civilian sent me away said they dont treat chronic abdomanil pain) but I am very careful with what they do give me and when I take it bc I know they will help, it just sucks going. I had my appt on last Friday and I was having a smaller flare bc we had to travel the day before but I could walk straight not in a 10 kinda pain....so I go in and she exams me and then do this test where they took this device and pushed on my lower abdomen all over real hard and it was giving off little shocks.... It was for like 20 mins.... Instantly of course I'm in pain and they keep on and finally I'm like please stop I feel like I'm going to get sick, like it hurt so bad i felt like I had vomit right there in my throat... Then I started getting real sweaty and hot feeling then came on this horrible dizziness and I asked again please stop, I feel like I'm going to pass out... They still cont for a just a lil bit more and finally it was over...she tells me that I have one of the worst cases she's seen( which after my Uro in WV done the diagnostic tests he told my parents that it was one of the worst cases he has seen. So the Uro on Friday goes through all the meds and I'm like yep tried that.... Ive been battling this Diease for years, trust me I've tried everything i can. I do research still.... We( my parents) have even ordered like herbal & homepathic meds trying to help.... So she says that the interstim she isn't going to worry about right now bc she said (these are her words) that I'm in this huge monster storm of a flare up right now that was so bad that she wouldn't be able to get it out now if she tried bc she said the muscles would be so tight that she wouldn't be able to get them out... Tells me she wants me to try elavil again( for Like the 10 time, but hey I am willing to try anything, I'm desperate) and neurotin again, also have tried many times... But again im willing... Also I tOld her periodium does help when I Need it so she prescribed that... Then the whole rest of the appt she is telling me about this plan/cute/program At this facility that she has started and wants me to do.. I'm willing until she then tells me that they will be pushing on my belly... Lower at that ... And not Just from the outside but also they would go in vaginally to push... I'm like ok... Are we really understanding each other, my worst symptom, the reason I ever even started seeking out treatment & answers was bc I was in such horrible pain, my parents are still paying on medical bills bc I was 16 at the time.... Not to mention having to come uP with over 300 to pay for that stupid elimoron for I think it was almost like 8 months for it to do nothing and I honestly think made it a bit worse...and the main symptom is still pain... I have figured out that if I don't drink alOt then I don't pee bc there's not hardly anything in there...I know it's not a good plan bc I know that I stay dehydrated( they always say something about it at the hospital , i guess they know from my urine culture?.. But until I can find someone who knows and will help I do what I can to just make it through the day... I do the same about eating... Again I know it's not good and I don't like having to pretty much self starve but I will do anything to try to keep away from any trigger if I can help it. So she does not address my pain, and I was scared to ask, bc I have been treating like a druggie so many times that now I hate going and talking to drs about my pain...but I did finally ask her and she said no I don't believe in pain medicines... I'm like ok so can you tell me what I can do to stop this pain bc I'm lAying on the table doubled over holding my stomach. Still crying bc this was after they did that test and was pushing on me so bad.... She told me to take some ibprufen and take hot baths and heating pads... I told her I've done that for years... I still do it... Its not going to stop this pain... She said well if your in this much pain you need to go to the ER and left.... So I tried to get up and as soon as I did almost passed out so I tried very slowly and wouldhave to wait a bit then get up a lil bit more then wait.... I was hurting so bad and so bad dizzy... It toke forever for me to get down and button my belt and get my purse, the girl came in and I told her and she wAs like oh man... And cleaned the room to prep for next pt.... Then I went to the bathroom bc of course had to pee bad but couldn't move fast.... And I kept putting cold wAter on my face tO keep from passing out.... I would go to try to walk out and feel myself start to like teeter and fall and lean back against the wall... It time awhile but when I opened the door there's that girl I think she was the nurse and she was like ok I'm going to show you where you check out... Told her again how bad I was feeling... She said i hope you get to feeling better... Felt like it toke forever to get out of there bc I was trying to be really careful so I didn't passout in front of those people and it was so embarrassing bc they was all staring at me, even though I was trying to walk as normal as possible .... So my husband helps me get in the truck and I tell him about it so he calls and talks to several different people through TriCare to try to get me some helP, so finally this one tells him to call this pain management clinic bc they deal with my Diease... So he calls and they have like a 2 month waiting list and he explains what's going on, so they say they need a referral .. And they will try to squeeze me in on Monday bc of it being so urgent..TriCare sent a referral and put it as emergency bc it usually takes 3-5 business days...won't know until Tom if they approved it though or if this place is actually going to get me in... I'm still in pain and still dizzy not as bad as long as I'm not up doing something, like I put a load of clothes in the washer and I was feeling pretty bad when I was done... So ive been researching and laying/sitting in bed since we left the ER Friday night...I am just to where I want to give up...I don't have My own life... This diease has my life... I can't be active like to run around with my 4 yr old ... No way... If we do go out like to walmart ( which i hate bc it kills me bc of how much walking I have to do that I have to go home and lay down bc I'm feeling so bad I feel like I can't hardly move. So basically I just feel so down, defeated,want to give up and beyond desperate to just have even a few mins that can be without this pain...I can't take it... Oh yea and my husband is deploying at anytime... Was suppose to have left last Tuesday but got bumped so it's just waiting a d then I have to move to nc to live near his family to help me bc we have 2 beautiful children... An 8 month old and a 4 yr old... That also I feel get punished by this diease bc of how sick I am all the time. It honestly runs our family and I feel like such a horrible mother/wife bc of it. Most of the time if I can stand it I will try to hide it from them... But never fails before to long we have to go home bc mommys not feeling good...my 4yr old will ask the drs now are you going to make my mommy better? Please make her belly better. The meds I have been on for pain before is Tylenol 3, darvocet, hydrocodone, and percocet. The hydrocodone will work some if I take the two pills to make it 10 mg but it doesn't take it all away.... The others don't help at all. I want to just feel better, normal, and I am desperate. Like this weekend I've taken the hydrocodone two of them at a time and I can feel the edge go off and the pain subside a little bit.. But still where I need to stay laying or sitting bc I am scared to take anymore that day bc I'm scared to run out so like now I'm feeling really bad, that little bit of relief was gone a long time ago so now it's just try not to cry and make it through the night .. And being very careful for no triggers and of course hot baths and my trusty heating pad.... So please if anyone knows of someone who will help me and treat every part of my Diease , bc it's always been they only treat the frequency and urgency if they do anything...I am desperate for a good dr. And I don't know where to turn or what to do..... Thank you if you made it through all this I know it's alot!

[Linda May]

look in the phone book for expert uros in your area. most doctors show a patient rating scale on the internet when you look them up. try to see the best rated uro asap. i dont no of any other solutions there was something about growing a new bladder on this forum, you might want to look into that as a last resorce. i wish i could help you more i will pray for you to feel better and find a good uro.

[Chloeclover2000]

Thank you so much!! I have I've been doing research like crazy.... Just don't know what or where to go.,and I need to find someone asap.... Thank you again so much!

[gidgit]

Urology of VA

Have you tried Urology of Virginia? When we got stationed here a year ago, Portsmouth would not even look at me, finally got an appt with this group, and have been very pleased.

Good Luck to you!!!
Sabrina

[dg2901]

Dr Kurt McCammon, urologist. Dr Rebecca Ryder (urogyn).