On Lupron with pain dr says no to hysterectomy

Anyone else in this boat? She (ob/gyn) says after having zoladex/lupron for a year the pelvic pain I have can not possibly be from ovaries or uterus. She says a hysterectomy will not help the situation at all. She said there is no evidence of cysts or fibroids.Which was a lie! I know what the ultra sound tech saw. I saw her measuse them and document them.

More history, I am a breast cancer survivor. The last of three tumors was er positive. Tamoxifen caused thickening of the uterin lining and fibroids. Several large cysts on the ovaries. Onc stopped tam after two years and put me on arimidex. I did not tolerate that well at all. Stopped that after 8 months.

Last year at this time they were going to do a hysterectomy and then the onc said lets try zoladex instead to see how your body will tolerate the total loss of estrogen. We switched to Lupron due to the cost of zoladex. In Feb. the gyn said we will do this another 6 months then we will do a hysterectomy, either the Lupron is working and a hyterectomy will be better or it won't be working and the hysterectomy will be our last hope. Now she says it can not possible help me any at all it has to be my bowels or bladder. Go have more tests done. I tell her I'm tired of being in pain, she says she is too and there isn't a **** thing they can do about it. ..... I was taken back a bit! What does her pain have to do with my situation? I was in tears. She told me she did not appreciate me being beligerant with her. She was the one yelling. I just looked at my husband. We left there wondering what had just happened.

If any one has any thoughts I would like to hear them. I am going to get in touch with my family dr and my onc today and I will probably find another gyn. I guee my biggest question is did any one have pelvic pain after having Lupron, have a hysterectomy, and then feel better afterwards?????? Thanks, Juliebear

It sounds like you should find another dr. Maybe your dr is correct that a hyst. would not help but I sure wouldnt let a dr treat me that way! Either way I would want another opinon. Maybe even two more opinions. I hope you are able to work things out. Good Luck, hang in there!

If you choose to get a second opinion bring copies of your ultrasound reports with you. Not only will you get a copy for yourself but you will have another interpretation of them. If the interpretation turns out to be vastly different, you might even want a tie-breaking third opinion.

Hi Juliebear,

I agree with Charmedone and Pearle. Get a 2nd opinion.

I think many of us ladies go with the medical evidence in our files ~and~ with our "gut" instinct about what is happening with our bodies. It sounds like your Dr. has shut-down in the listening dept. and does not want to hear your side anymore.

Start fresh. Get another opinion and have the 2nd Dr. look at your file. I got a 2nd opinion and I was very glad I did. I was prepared to get a 3rd.

Best wishes,

Mary

Hi Juliebear,

Just a footnote. I am NOT a Dr. and you mentioned pelvic pain. Has your Dr. ever talked to you about endometriosis?? Here is a link for some info.:

http://my.webmd.com/content/article/85/98744.htm

Just gives you some more info. to look at.

Also, I did (3) months of lupron shots to shrink my fibroids enough for a LSH, a less invasive hyst. My Dr. did not want me on lupron more than 3 months. As my Dr. described it, lupron is a temporary "band-aid" for a problem. Lupron causes temporary chemical menopause and it can cause bone density loss if used for extended periods of time. Not to scare you, and you might talk to her about it.

Best wishes again,

Mary

Hi Juliebear,

Another opinion certainly does seem to be warranted. It's very important to have a doctor who will listen to you carefully and take the time to explain things in detail. They are hard to find but you can tell the office when you call that this is what you are looking for and if their doctor does not fit that description, you would prefer not to waste either of your time. Also, ask around; ask other women (and especially nurses) who they would recommend. Remember, YOU are the customer who is buying this doctor's services, not the other way around.

Having said that, I also caution against hysterectomy until you are 100% certain of your diagnosis. There are NO guarantees that hysterectomy will end pain and it is not a harmless procedure. Especially if you are going to have an oophorectomy. (ovaries) Just like historylady said, the Lupron treatments can cause bone density loss which not something to be taken lightly. The risk comes from the Lupron shutting down the ovaries, so therefore, if you remove the ovaries permanently, osteoporosis becomes a permanent, (and often, life endangering) threat to your health. Not to mention the higher risk of heart disease, stroke, and a host of other medical problems that go along with losing the ovaries. Remember, the ovaries are part of your endocrine system and, as such, play a much bigger role in your overall health than just reproduction.

As for me, my hysterectomy certainly did not cure my pain, it only caused me much, much more. To make matters worse, I was misdiagnosed and as it turned out, did not need a hysterectomy in the first place. Now, every day of my life I wish I had gone for another opinion and researched my problem more thoroughly before letting him operate on me.

It seems clear that you are having a problem, and especially since you have already had cancer I would agree that you need a good work up. I hope you can find a doctor who will help you soon. Good luck and best wishes,

I'll add yet another voice for another opinion (or two).

You need a solution, and Lupron is not generally recommended for more than 6 months due to bone loss and other side-effects.

S & best wishes - keep us posted!
joano

I was pain free when I was on Lupron. Like the other (((Sisters))) mentioned, 2nd or 3rd opinions may help you find more answers and a nicer doctor too. I know emotions run high when we are frustrated and in pain.

I hope you have better luck finding the cause and cure for your pain.

Gentle s, Beth

I'd certainly get another opinion. I experienced something similar to this years ago. I had suffered with pain in my left side for years and had seen doctor after doctor. My GYN actually told me, in the presence of my husband, that I was not in pain, the so called pain was in my head. He was very hateful and told me that if I didn't want to take the birth control pills he had previously prescribed but did absolutely NOTHING to help my pain then there was nothing else he could do for me. I'll tell you this, I thought my DH was going to knock him out of his chair. I couldn't get dressed fast enough to get OUT of there and I never went back. I found a WONDERFUL christian clinic out of town and scheduled an appointment. When the doctor entered the room (after reading my chart) the first words he said to me were, "tell me why you are here today". I started crying and explaining my pain, etc. and I told him what my former GYN had said to me. He could not believe it....especially AFTER he asked me what measures he had taken to come to that diagnosis. I explained that the ONLY thing he had done was a pelvic exam. Two days later I was having a laproscopic (sp) procedure done that led to a diagnosis of endometrosis and my doctor was very fast to tell my husband to make sure I KNEW the pain was NOT in my head. There is a lot to be said for doctors who are not afraid to use their bedside manners and their expertise to come to a COMPLETE diagnosis. I've been on LUPRON only to have my symptoms reoccur....and now am scheduled for a TAH/BSO on May 25th. I've been in pain for many years now and I can't even bare to think of continuing this way. I'd DEFINATELY search for a SECOND opinion. There ARE other options. I'm sorry to be so long with this response but I want you to know that I've been where you are....you're not alone.....Keep us posted on your journey. Find that new doctor!

It is nothing different than what everyone else is telling you, but you really need another doctor. Your current doc is not only rude and dismissive, she lied to you about the results of your tests. That is, in itself, reason enough to stop using her services. This is the most intimate professional relationship you will ever have, respect and trust must be mutual and inviolate, with this woman (I hesitate to even call her a doctor) you have neither. I was also told by my former gyn that if Lupron did not work, she would not even consider surgery, because of course Lupron always works for everyone who has pain caused by their reproductive organs. Bullchips. She refused to do tests, to share the results of tests with me when they (well, it... ultrasound, nothing more) were done, and told me flat out that finding a diagnosis "isn't the issue". I understand now that, since there is no possibility of surgery without a diagnosis to warrant it, she simply decided not to make a diagnosis. I walked away, there are more than enough doctors out there who will treat you with respect and be truthful and thorough, nobody should continue to try to work with a doctor who can't manage to be professional. Look into their background (even get a phone consult to discuss personal beliefs if you can) before you choose a new gyn, but definitely make your last visit to this one your last visit to this one. Your health is worth so much more than her personal issues. Good luck, honey.

Dawn