What to do while I'm waiting?

[crystilclear]

Hi all! Just to try ans summerize I've been through hell trying to get a diagnosis. I've been sick since I was a young child. I finally have a diagnosis and I'm still waiting for someone to actually help. My uro is aweful. I told him that my bladder sometimes spams so hard I can't urinate sometimes for an hour or two. He thinks I also have IBS, and PFD but sayd that by treating the IC the rest will be taken care of as well. I was recently in a huge flare for 3 days. I asked him to perscribe mne something to help because I didn't want to take a wasted trip to the er again. Hew gave me 10 pills of vicodin which I've had for a couple months. I use it very sparingly because I had to pry it from him in the first place. He acts like I'm a pill popper when that's the first time I ever requested help. He says a warm bath and heating pad should do the trick. This comming from the man who said I had the worst case of IC he'd ever treated with wall to wall ulcers. Yet he acts like the pain is in my head or something. I usually struggle throught the day but I'm becomming more and more irritable and that's no fun for my 3 kids and my wonderful hubby. I'm waiting on a referal to Balimore University. But in the meantime I'm so stressed. I've already had 6 weeks of DMSO and been on meds for about 6 months. He has me on elmiron 3x a day, elivil 1 25mg at night, and nulev 3x a day. He really hasn't had any other patients like me and has made more than 1 mistake. Like he left gause pads in there for 3 days! I didn't even know they were up there and I was so swollen from the cathater that it was unable to dislodge. ANyways I'm so fed up riught now. I feel like he is prejudice against me because of my age. Or maybe I'm reading too much into this. He does definately talk down to me. I'm 25 with 3 kids and just because I'm young doesn't reflect on my ability to take care of my kids and such. I have a wonderful husband who was my high school sweetheart, 3 awesome kids, a nice house... Sorry I'm rambling and venting on you all. I just feel helpless and a little hopeless right now. Any advice? Has anyone else had problems with their doc? Well thanks for the chance to vent. Sorry it is a little long winded. I hope you all have a pain free day! Thanks - Chris :(

[Sarojini]

:grouphug:

I'm sorry to hear you are having a difficult time getting help for your pain. I hate hearing stories like this... my uro is wonderful and helps me with pain meds, but I've heard so many stories from those like you who are having a hard time. :(

I was reading THE textbook on urology --Campbell's Urology-- the other day (yep...I am a medicine nerd ;) ) and, while it has a great chapter on IC in it that advocates pain control, I suspect many uros were either trained before that chapter was added or never got to it.

However, in the introductory chapters someplace, there is this part in there that made me kinda mad... it said that pain from the urinary tract can be very severe if it comes from solid organs like the kidney, but that pain coming from HOLLOW organs like the bladder and urethra was less severe, and more discomfort than actual pain. HUH?!?!?!?!?! I mean, really, I wish the guy that wrote that would get a bad UTI, or IC, or BOTH AT THE SAME TIME -- and then we'll see if he still thinks hollow organs don't cause pain.

BUT, my point is, I think a lot of uros read that book in med school, and they've been somehow taught that this pain is not real... it STINKS. :mad:

ANYWAY, have you tried your regular doc (general practitioner)? Perhaps he would help you with pain meds... or your gyno would, maybe. Some people find that is easier...

And even if you feel your uro is looking down at you for being a young mom... know that *I* am not. I admire you... you sound like you have a good, solid family and sounds like you are happy (well, aside from IC)... that is impressive at any age!!!!

:grouphug:

[crystilclear]

Thank you so much. I did go see my reg doc and he said I quote "Don't think that I'm going to perscribe you anything". And I told him well I didn't ask you for it. He told me to manage because I'll have to deal with it for the rest of my life. Maybe it's this state? Wv area or something. I can't wait to move back to Maryland. I feel like an outsider anyways. A city girl stuck in the country. It's not too bad it's in the tristate area next to the beautiful area of Harpers Ferry. I have a doctors office that has tons of patients and overfill their days with too many app. which results in poor patient care. It has better pediatric docs and that's why we still go there for the kids. He's the *** that told me to try and pee in the shower when I find it hard to go. Yah like that works and yuk! Not even gonna sit in a bath full of it either!!! Anyways thanks for the comforting words. I appriciate it especailly when I'm feeling so down. I never had problems making new friends or going out but I've been struggling for such a very long time that I've lost touch with friends I've known since I was little. They're all in collage partying while I'm at home with the kids. Not that it's not what I want but just that I can't seem to relate to them anymore and I feel isolated from other girls my age. I dson't have any common intrests and I am 25 going on 65 it seems. My husband gets upset because I am tired all the time and have been that way since he met me at 16! Is the low energy from IC too? My mother in law is constantly getting on me because my hubby lets me sleep in every weekend. She acts like I'm so unfair to him. But I've offered and he does once in awhile. I have such a hard time sleeping from the pain and after the DMSO treatments have worn off I'm getting up at night again. I'm falling behind in everything. Sorry I'm just feeling very lonely even in the midst of caoss my life is right now with the 3 kids and all. Sounds silly I guess. Thanks for listening sorry to talk your ear off. I've just been holding it all in and it's just starting to all come out anywyas. Thanks again - Chris

[Sarojini]

Geeze!! I'm sorry your primary doctor was so unsympathetic!! That is awful... really, I think before these docs graduate from medical school they should be tested not only on whether or not they have learned the proper amount of medicine, but ALSO on whether or not they have any decent interpersonal skills!

Also, I am so sorry you are feeling so lonely. If you want a penpal, you can email me at jen424@earthlink.net. I'm a pretty diligent email correspondent, and I know it's not the same as having all of your friends right there with you... but sometimes it helps just to be able to talk! :) I'm fairly close to your age -- just turned 30 a few weeks ago--- and I'm married, but don't have kids yet. And of course, I have IC... so I know what that's like too!

I know what you mean, too, about not fitting in. I grew up in Boston, went to college there, and then went to grad school in Los Angeles... and then moved to Memphis to take my current job. WOW. What a change!!! Memphis is so much smaller, and the Southern culture was like nothing I'd ever seen. I felt SO out of place for a while, especially since I was single at the time and everyone I met was married with kids (kind of the reverse problem from yours!) However, I ended up meeting my husband (who is also a transplant... he grew up elsewhere too) here, so that worked out. But I was depressed for a while, let me tell you. To be honest, though, my hubby and I have been talking about moving elsewhere in the next few years -- neither of us feels like we are real, true Memphians even still!

Oh, and my energy level gets REALLY low sometimes too -- I think it is the IC. In my case, it's my father-in-law that pesters me about it ("Is your bladder all better yet? NO? Why not???" and "What do you mean, you are too tired and sore to go on this big hike with us??".... ugh... and the man is coming to our house next week for a visit... yikes!!!) I try to just ignore him... and my husband and I put up a unified front with him, so lately he's backed off some...

ANYWAY, feel free to email if you want to chat more any time!!

[redstonebef]

Your letter breaks my heart. I am 57 but I have struggled with IC pain and urethral pain since I was 20. Back then there was no pain meds either. These Drs. must still be in the dark ages. You need to find a Dr. that specializes in IC. I hope you the best of luck and yes it is so hard to have children and be sick. I went through the same thing. Thank goodness I now have a pain control that works. I take it every day. Hugs

redstonebef

[Iris]

Hi there, I also feel for you, especially being young, raising a family, and battling IC at the same time. I also know the feeling of being alone, my husband was in the military and so we moved a lot. I had small children, and felt so isolated and alone, and did not have IC then, but know that feeling of isolation. I also feel for you that you cannot get any med to at least help with the pain side of IC. I consider my self very blessed, as I have a very compassionate, and caring urologist, and a Nurse Practitioner who helps with the pain and anxiety side of my IC. Hope that you can get something to help you out and get to feeling better. Always here to give you support whenever needed. Keep us posted as to how you are doing, hugs Iris. :hi: :kiss: :grouphug: :flower:

[codyryonwoodward]

I am SOOOO sorry. I know where you are coming from. I have a Uro who told me no more pain meds just because I have a interstim. He even said there is a new law about having to what 6 wks after a interstim adj. and told me I needed a pain mang. dr yet will not give me a referral. They just dont understand what we go through on a daily basis.

I am also young, 32. I was around 25 when IC started bothering me but it took5 yrs to get a diagnose. Uro after Uro told me it was all in my head. I also have 3 kids. IC caused me a divorced in 2000 but 10 months later I married the man I have waited all of my life for. Thank god for him.

I get more understanding and all of my pain meds from my gyno he has more sympathy thank any other DR I have every encountered. I wish you the best

[crystilclear]

Thanks everyone. I ended up taking a pain med tonight. I think that 2 days of moderate to servere pain warrents something. Wow I really must say that I am in awe of the outpouring of support I've found here. You are all so sweet. Thank you so much for taking time to offer advice and comfort to me. It's amazing because everyone is so kind. I appriciate it so much. Especially when you don't even know me. It seems as though sometimes the most compassionate people are the ones who have experienced pains and different tramas in their life. It's sad that any one of you have to go through struggles but it is so wonderful that even in the midst of all this you're still willing to try and help others. It takes me awhile to let myself give in and take a pain med. I want to be strong so bad. It's just I find myself feeling extremely irritable and angry because I'm in all this pain day in and day out. I'm really stressed and feeling very overwhelmed. I just want to feel like I have things more under control if that's possible. :kiss: you all are so great!!! I hope everyone has a good night. - Chris