lost and don't know what to do

[rdo801]

I'm so lost and unsure of where to turn next. My final appointment before the Cysto/hydro & biopsy is coming up next week. i have been waiting for this one for 3 months now. I have already had the IVP & in office Cysto and everything points in the direction of IC. But I'm unsatisfied with my Urologist, but feel very angry with my family doctor who told me he wouldn't see me anymore because he thinks I'm there to get drugs. I'm not a druggie but I human and can only handle this pain for so long before i loose it. After what happened with that doctor, I'm scared to find another doctor or to even ask for pain medication. But on days like today when my bladder is burning and I feel sharp stinging stabbing pain at random, i think it's warranted.

My husband is frustrated also. Because every time we have intercouse I get a bladder infection. I have tried just about everything to prevent them (washing, using anitbacterial cream, different positions etc..), but no matter what we do I get an infection each time we have intercourse. Right now because of my current pain level with IC we are both scared to do any more damage so we are abstaining. Each infection makes the IC worse and vice versa. What a vicious cycle!

I don't trust Doctors anymore and wondrered if anyone else has had these same problems? What do you do if you are in need of medical care and your doctor says you are either a druggie or that we have to wait. I don't want to wait, I want to get my life back. Right now at 32 my quality of life has diminished, and my levels of depression increasing.

Any ideas?

Thanks
Rikki

[ICNDonna]

It sounds like you are on the right track to get a diagnosis, which the hydrodistention and biopsies should provide. When you have infections, are they being diagnosed by cultures being done --- or simply by symptoms? If you aren't having cultures, it could be that the symptoms you are experiencing are not actually from infections. The urologist may be able to help with this problem.

I do think you could be thinking of finding a different primary care physician. Many will not order full time pain medications, but most will not refuse to see a patient.

Sending warm healing thoughts,
Donna

[kelly McC]

I had a hard time finding any one who would believe me or help me. I canged primary doc and saw 4 Uro's. I got a list together from here and the ICA and starting calling around. I have 2 great docotrs now who know what IC is and the pain it causes. Good luck I would suggest keeping a journal of you pain, bring a copy of patients pain rights and information about IC It helped me
Kelly

[SharonA]

Do try to find a doctor who will work with you, not against you. It will make all the difference in the world. Check out the doctors listed on this site as Kelly suggested.

As far as infections after intercourse, ask for a low dosage antibiotic that you can take after sex. That might help.

Check out the IC Patient Handbook at: www.ic-network.com/handbook (http://)

:) :) :) :) :)

[vm]

I take one antibiotic pill after sex and haven't had a UTI in 10 months now. I used to get 4 to 5 infections a year. You might ask about that if they are confirmed infections.

[rdo801]

Thank you all for your posts. My urologist took my sample and said that there wasn't a sign of infection (I didin't think I had one) but blood. With the burning pain now stinging me instead I'm not suprised. He prescribed Ultracet.

I do get actual infections, and six months ago i couldn't tell the difference between an infection or IC flare. But now I know when it hurts while I urinate, I have an infection. instead of hurting before and after.

My husband and i were very careful during intercourse 2 nights ago but last night I was up all night in pain and this morning i can barely move. i know i have another infection. i was already having a horrendous IC flare and this on top of it has me in tears with every move my body makes.

My husband has gone from supportive to unsupportive. He goes back and forth. It makes it very difficult for me. He 's unemployed right now and i work from home but he's angry with me for being sick and unable to help more with our kids. I do help as much as i can. it's not helping.

This is a great board. Thanks for your help and encouragement.

Rikki

[vm]

Rikki - Please ask about an antibiotic for after sex. It really might help. :kissing:

[ChefGrl84]

i went through 4 docs before i finally found one that could tell me what was wrong. i am one of the lucky ones though and do not have much pain (in remission now for 6 months).. i was like you though getin the pain after intercourse.. i found that you just hvae to be very careful to make sure his penis doesnt touch your bladder (he doesnt put it in too far). specially if he is large in that area. and urinate before and after sex, even if you dont think u have to afterward.. also.. try and not wear anything tight fitting afterward.. you have to as they say "let it all hang out" (lol..pardon the expressin).. you may want to say down for a while after you urinate.. let your body relax..try having a glass of rice milk before and after also, it helps to neutralize your bladder..

Ohh.. before i forget.. you can also try one of those adhesive heating pads on your lower abdomin.. they work miracles..

Good Luck :)

:angel: Rachel