A Newbie Whose Lost Faith in Doctors

[jentribue]

I've had pain for four and a half years, but I was diagnosed officially about ten days ago. I've been reading the message board and information on the site for a few days and I feel so angry, frustrated, impatient and sad. I've had doctors tell me my pain was in my head (males, of course) and I've seen a therapist who told me it wasn't. I've had a baby (thank God) and almost had a hysteroectomy as I also have endometriosis and adenomyosis. After four and a half years of pain and suffering, I finally have a diagnosis. The pain is unbearable. I'm impatient to get relief but do you know what the urologist says when I call and ask for help? "I don't treat with narcotics and it takes 4-7 months for the Elmiron to work." Do you know how frustrating it is to FINALLY have an answer only to be told that sorry, you'll still have to suffer? I'm looking for a new urologist today. I read how many of you have medications your doctor provide that help with pain and I can't get my urologist to talk to me (I had to page him after hours to get around his nurse). Somehow, it makes me more angry that they KNOW what's going on and they still won't help me. Why do they become doctors if not to treat suffering? I don't think there are any female urologists in town, but I'm sure going to look hard for one! I have the article one of you posted that was a speech by Dr. Brookoff. I'm going to send it to my urologist. I have tears in my eyes as I write this. Another day of suffering and misunderstanding in front of me....

Thanks for listening. I thank God for this site and this forum!

[humpieumpumkin]

Your Uro seems like a real piece of work:cussing: No one needs to be in pain. If he knows it takes that long to work why not make you comfortable until then? Some uros arn't comfortable giving narcotics...the ones that are good will give you referral to a pain clinic if they wont do it themselves. In the mean time I would practice self-help. Heating pad, bath, pyridium, camomille tea w/honey, tums, and deep breathing. The pyridium is truly a life saver for the notorious Burning pain:rant: Good luck:pray:

[hoping4acure]

Please don't give up--some of us have gone through SERVERAL doctors to find the one that is right for us.

I am going to tell you what one of my doctors told me "Don't EVER let anyone or any doctor make you think it's in your head, It's REAL pain" so, again, please don't give up! There is a doctor out there for you.

Please let us know how you are doing...we care!

:)

[Sarojini]

Right, don't give up!!! :) It's hard to find doctors who are willing to help, but they ARE out there. I have had two who are wonderful and who have helped me manage my pain, so they are out there.

Can you talk to your primary care physician about the situation? If neither doctor is willing to help with pain, you can always ask for a referral to a pain management clinic... there, the main and usually only point is to treat pain. I go to one since my urologist is an hour away and the pain clinic is just 10 minutes away from me -- so to make it easier for me to get my montly pain prescriptions, my urologist referred me to this clinic. It does help.

:grouphug:

[Bessie]

I agree with the others.......don't give up. I also go to a pain management doctor and he does prescibe medication to help with the pain. My urologist did prescribe pain medication a couple of times and then told me I needed to see the pain management doctor for continued pain treatment. My pain management doctor is so compassionate and willing to try different medications to see which will help the most. Please keep trying until you find the right doctor. There are some out there that really do care. Please let us know how things are going. Hang in there :)

[kari1980]

Jentribue.....I sympathize with you, I went through the same thing with doctors...I've been to several different urologists, including female ones, and none of them will prescribe pain medicine for my pain...Luckily I have a wonderful internist that I've been seeing for over 20 years, so he has been good so far about giving me pain medicine. So if you have a good relationship with your internest, try him...I don't understand either though why the urologist are so difficult about the pain meds when they are the ones who diagnose us and know that it is a "Real" condition and how painful it is. I just don't get it....If it wasnt' for my pain meds, I'd probably be in the ER every week! Keep reading the boards and take the advice on how to try and relieve the pain in other ways until then, and also watch what your eating, I really do find that when I eat something I shouldn't I am in so much more pain.......
I wish you luck, hang in there!

Kari

[Berkshire Road]

I was in exactly the same situation at one time, and I really thought I'd rather be dead than continue in this amount of pain. But I found a psychiatrist who deals with pain management and stress management, and she's great about giving pain scrips.

Don't give up!!! I seriously wasn't even going to go see this shrink, figuring it would be the same old story, but my husband more or less dragged me there. And it turned out the she (the Dr.) has IC, in remission, and she totally gets it.

So I guess the message is, keep trying no matter how discouraging it is. When you least expect it, you may find your angel.

Carolyn

[Trishann]

I do understand about having alittle bit of faith in the doctors. But don't give up because their are still good doctors out there. I hope you find a good doctor soon that will deal with the issue of your pain. Don't continue to suffer because a doctor won't help you. :rant: That is what I am think right now.

[izazen]

A good self help tip I got from dear Katrina is to place your heat source (heating pad, microwave sock, etc.) on your perineal area (between vagina and anus) its a wonderful area and seem to neutralize both the urgency and/or pelvic pain. Sometimes you have to squoosh it around a little bit to get the exact RIGHT spot but when you do - you will be able to rest and get some sleep. Its nice to play a relaxation cd or some spiritual music in the time its taking effect. Good luck!