So frustrated

[designermillion]

I have been having bladder pain on and off for the last 10 years. It started with a urinary tract infection in 1998 that just wouldn't go away. I have since had them on and off until July of last year. That's when the constant pain started. At the time I was diagnosed with another UTI, but after being treated with antibiotics the pain never went away. I finally went to see a Urogynecologist in September, and without even performing any test, he diagnosed me with IC. He just seems to want to prescribe me medications. Right now I'm on Neurontin, Hydroxyzine, Vesicare and Percoset for pain. I just started the Vesicare two weeks ago. The Neurontin/Hydroxyzine combination seemed to be working for awhile, and then all the pain came back with a vengeance. That's why he put me on the Vesicare. I was doing pretty good on the Vesicare the first week and then the pain came back. I've been reading that you flare before your period, and that seems to be exactly what has happened, because I started my period this morning and the pain is mysteriously gone (as of right now-but that could change). The one drug I want to try is Elmiron, but this doctor refuses to prescribe it. He said he's found it doesn't work. I would at least like to try it! This doctor's office doesn't respond to my phone calls in a timely manner (if at all), they won't call you back with urine test results and they have even lost my urine sample once. Since I have been in so much pain, I finally went back to my primary care physician yesterday just to have her check my urine. I know she will give me the results and won't lose the sample! I told her everything the other doctor has done (or should I say, hasn't done) and she was shocked that no tests had been performed on me. She suggested I see another doctor. I am just so freaking frustrated with all of this. I don't understand why this pain won't go away!! I am almost 36 and my husband and I would like to start trying to have a baby, and I just can't do it with all of this pain or being on the meds associated with it. He's pressuring me everyday about it and just doesn't seem to fathom the amount of pain I'm in. Maybe he thinks I'm making it up? I'm also frustrated with my stupid doctor. It's like no one seems to care you're in a lot of pain. Let me just write you a prescription so you'll get out of my hair and I can make my Mercedes payment! I know everyone else on here has their own problems, but I just needed to vent. :cussing: Thanks for listening!

[SharonA]

:welcome: to the ICN...

I think it is a good idea to try to find another doctor. Ask your PCP is she can recommend someone. When you call for an appointment, ask the person if the doctor treats others who have IC. From the response, you will probably know if this was a good recommendation or not.

IC is as new to your husband as it is with you only you are the one feeling the physical pain. Give him time. It might help if you were to print out some of the information available on this site regarding what IC is and how it effects all parts of your life. If you are comfortable with him coming here and reading our posts, it might help him understand what you are dealing with.

Don't give up on having a baby. It is possible despite having IC. There are many here who have been pregnant or are right now. Read their posts and stories. They could help you.

:):):)

[Claredale]

The most important thing is to have a doctor that you can trust and that you can talk to and that listens to you. When my prior doctor left for another job on the other end of my state, they brought in this "wonderful" doctor that was supposed to fill my doctor's shoes. She didn't even come close. She didn't even realize I had a sacral nerve implant after my 2nd appointment and I asked her about having it adjusted (which she didn't know how to do). I immediately googled her and found out her credentials, which didn't include knowledge of IC. I got in touch with my prior doctor and she put me in touch with the doctor am seeing now and have seen for 2 years now. That is one that I can count on is him listening to me and we are a team in treating my IC.

Please keep us posted.

Tracey

[designermillion]

I'm confused about the difference. Who should I be seeing??? When I looked up the new doctor I was referred to, he is listed under Obstetrics and Gynecology, however I've also seen him referred to as a UroGynecologist. Is it better to just see a Urologist? Do they even treat women??? I'm just confused I guess.

[sickofmybladder]

I am currently seeing an ob/gyn speciality doctor who specializes in pelvic pain - this doctor is the one that diagnosed me - and he is very nice - however, his experience is limited with I.C. - and he is not treating my pain so I am going to a urologist at the end of this month that specializes in I.C.

A urologist is a urinary specialist (so to speak) - they specialize in urinary issues, kidney and bladder - they absolutely do treat women.

I think each persons case is different as well as their relationship with their doctor - you have to decide what is best for you.

Good Luck

[traceann]

I do agree with the rest here that another doc may be in order, especially since your PCP suggested it as well ;) I know that Elmiron has helped quite a few people, myself included, lol. So, I would think you should at least get to try it if you'd like to providing that there's nothing in your medical/health history that says you shouldn't etc. That's just my opinon, though, lol :)

My take on a UroGyn was that not only do they treat the female urinary system, but also the reproductive system etc. You could get a pap test and yearly for example. At a urologist, it's just the urinary system, bladder etc. I agree that it's all up to you - whomever you feel the most comfortable with personally - be it a uro or a urogyn - as long as you like the doctor as a person etc. as I would think both specialties are of equal value. It's really important to have a good relationship with your doc, after all you should be a "team" and take a team approach to managing your care.

Hope you feel better soon and find a doc who will listen to you as well!!!

hugs,
Tracey

[VSBY]

How do you deal with the headaches? Advil or Tylenol?
Vsby

[leelee88]

Advil can be very hard on a lot of ICers. I for one can not torlerate it..

[designermillion]

Since my last post my pain had almost stopped and then a few weeks ago I noticed some frequency starting again. I didn't think much of it at the time. Then when my period started, I started having some fullness. That was very odd for me, because I usually get the pain during PMS and it would go away when my period started. Once my period ended, the pain came on full force, and let me tell you it sucks BIG TIME. I am on no medication now (I ended the Hydroxizine and Neurontin months ago), so I don't even have any to take. I have been living on Pyridium (the stuff that turns your urine orange?), and Percoset. I am absolutely miserable. The Percoset makes me sick to my stomach for hours. I noticed this time around that I was having a really bad time with my IBS around the time the pain started, and I also felt like I had a yeast infection. I don't recall ever having vaginal itching before. Is that normal? I took a Diflucan just in case, and it has some what subsided, but I still feel it at times. I don't just ever get yeast infections. I get them from antibiotics, which I have not been on. I don't know if any of this is related, but seems to be out of the ordinary for me. I haven't changed anything in my diet or life style, so I have no idea why the pain has returned. I just needed to vent again. I'm SO upset. :help:

[SharonA]

It is probably time to see your doctor, again. I hope you start feeling better.

[aleet7]

Since my last post my pain had almost stopped and then a few weeks ago I noticed some frequency starting again. I didn't think much of it at the time. Then when my period started, I started having some fullness. That was very odd for me, because I usually get the pain during PMS and it would go away when my period started. Once my period ended, the pain came on full force, and let me tell you it sucks BIG TIME. I am on no medication now (I ended the Hydroxizine and Neurontin months ago), so I don't even have any to take. I have been living on Pyridium (the stuff that turns your urine orange?), and Percoset. I am absolutely miserable. The Percoset makes me sick to my stomach for hours. I noticed this time around that I was having a really bad time with my IBS around the time the pain started, and I also felt like I had a yeast infection. I don't recall ever having vaginal itching before. Is that normal? I took a Diflucan just in case, and it has some what subsided, but I still feel it at times. I don't just ever get yeast infections. I get them from antibiotics, which I have not been on. I don't know if any of this is related, but seems to be out of the ordinary for me. I haven't changed anything in my diet or life style, so I have no idea why the pain has returned. I just needed to vent again. I'm SO upset. :help:
I'm sorry that you are feeling bad. I also get worse during pms and then all my symptoms leave during my monthly and then come back when it's over. I hope that you can get some help soon!

))Hugs((
Teela