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Here's my doctor's plan: (sorry for the long message) Here's my doctor's plan: (sorry for the long message)

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  #1  
Unread 04-14-2003, 01:14 PM
Here's my doctor's plan: (sorry for the long message)

Hi again,

(background first: 40yo with heavy bleeding and cramping since Mar 10th, saw doc 10 days ago and had saline sono and endometrial biopsys done. Doc saw fibroids on sono and said also poss. adeno)

This AM I got a call from nurse #1, she tells me that the endometrial biopsy results came back as "everything benign"-no cancer cells and no precancer cells, no abnormal cells. That is good news. Then she proceeds to tell me that the doctor wants to try me on Provera (10mg twice a day for 12 days), then monitor menstruation from there....I was very confused because when I saw the doc 10 days ago he had mentioned that he was thinking about putting me on BCP-90 day cycle. I asked the nurse a few questions and the more she talked the more confused she made me....so I just thought I'd call back later and talk to the one "reputable" nurse in the office later today. So then I asked nurse #1 for the results of my mammo that I had done last week (not having problems there, this test was previously scheduled as my annual check up). She then tells me that everything was fine and I quote "I guess that lump he felt turned out to be nothing"...???? I am thinking "what lump!!!! He never told me about a lump" So once again I chock it up to her being totally clueless...However, once I hung up I got furious!!!! I started to think I'd better complain about this "boobhead" because she is probably misinforming soooooooooo many other ladies!!! So I did place a call and request a call from nurse #2.

One hour later , nurse #2 calls me and I ask for clarification on all of the above....she did offer a good explanation as far as the provera and said that the doc wants to "mature the lining" and see what my body wants to do naturally after that. The bad news however she said that she thinks that this abnormal bleeding will most likely return....according to what the doc wrote in my chart he said my fibroid is quite large (I asked for a specific size and she could not find that for me) and he further wrote that he did not think that a hysteroscopy would be possible due to size as well...Nurse 2 warned me "to consider something more permament" and said I should talk it over with my family and to let her know...I did tell her that I have been thinking long and hard over the last 10 days while we were waiting for the biopsy results and that I am leaning towards the surgery. Besides I also pointed it out to her that the meds will not address the fibroid issue and if it is large and doesnt belong there I will want it taken out. I do however want to see what happens after I take the meds. Perhaps it will buy me a little time before needing surgery. Thanks for reading my novella.

By the way, if anyone has experience as far as taking the provera I would appreciate any insight...Thanks as always,

Edited to add: I did also complain to nurse #2 and asked her to take it to the appropriate level in the office (she is the nurse manager in the office ) so she reassured me that this will be addressed...furthermore she said whenever I call to ask for nurse #2 specifically by name and she will call me personally. We also discovered that my latest mammo report was not even in my chart so ding-dong nurse 1 was reading a report from 3 years ago....arrrrrgggghhhhhh.
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  #2  
Unread 04-14-2003, 01:27 PM
Hi,

I have taken Provera twice in the past. The first time was in 1998, right about the time my fibroids were diagnosed. I'd had a period that went on for three months, and so took Provera in ten day cycles for six months.

It worked pretty well that first time, and I didn't have any further problems until January of last year. I had skipped a period entirely in December, but when it finally started in January, it went on for two months! I again was prescribed ten day cycles of Provera, but it didn't help at all this time. The bleeding continued and was so heavy that I ended up in the hospital for complications related to anemia. During that hospitalization, it was recommended that I have a hysterectomy, which I did in May.

The Provera may stop the bleeding, but it won't do anything for the fibroids at all. Mine grew at an alarming rate from 1998 to 2002, and my uterus enlarged to a 20-week pregnancy size. Sometimes the "cures" that the doctors attempt are just a stop-gap measure, not a permanent solution to the problem, and all that really happens is that you prolong the inevitable.

You should discuss this further with your doctor, and carefully weigh the pro's and con's of the situation. There's a lot of excellent resources on this website to help you make your decision.

Best wishes and s,

Lisa

PS: I hope that "lump" that Nurse #1 mentioned was explained by Nurse #2!
  #3  
Unread 04-14-2003, 01:34 PM
Here's my doctor's plan: (sorry for the long message)

Before you take that provera I would suggest you speak directly to your dr. You had two tests and you deserve to know the answers directly from the dr. That's their job! It's to confusing to get the information from the nurses. Did the dr. even mention the side effects of the provera? I also noticed you said possible diagnosis of adenomyosis. As far as I know if it is that, the only permanet cure for that is a hysterectomy but it can only be diagnosed after hysterectomy pathology report. Adeno can be scattered so it may not show up as a biopsy. You also mentioned how large the uterus was. Was there an ultrasound? Usually that would indicated the exact size. I was told if mine were 10 week "pregnancy size" or bigger the vaginal hysterectomy route would not have been done. Good luck to you.
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  #4  
Unread 04-14-2003, 01:38 PM
Hi Lisa,

Thanks for your reply and for sharing your experience. I feel just as you do....that this is most likely a "stop gap" measure and not a permanent solution. Since this is my first time around with this diagnosis, I am certain that much of this is to "satisfy" the paper pushers at the insurance company....I could go on a huge tangent here, but it is mostly a huge rant so I will spare everyone that today. Knowing how my HMO insurance company is, they will want to have conservative measures documented first before jumping into surgery....so I think that is what my doctor is establishing here....there is some benefits in that, but I am pretty certain where my fate lies...Thanks again for your input.
  #5  
Unread 04-14-2003, 01:45 PM
Here's my doctor's plan: (sorry for the long message)

I wanted to add to my post that You need to make sure that you and your dr. are along the same lines. The nurse said to you to "to consider something more permament" and said you should talk it over with my family and to let her know. If your dr. had something else in mind that would really make things confusing. It would be mind boggling to see you talk to your family about a possible hysterectomy when the dr. may actually recommend something else like a myomectomy. You need to let you dr. know how you feel about wanting the fibroid out and if the meds will address the fibroid issue.
  #6  
Unread 04-14-2003, 02:30 PM
Here's my doctor's plan: (sorry for the long message)

Hi! After years of dragging my feet and enduring the misery of pain--cramps, heavy bleeding, sleep loss, painful intercourse...I finally decided it was time to make my move. We have a 6 1/2 year old who was born with a liver disease and had a liver transplant 3 years ago, plus we've moved 3 times (diff. states) since my son was born-due to my husband's job.

With my newest GYN doc--she suggested a medication...or a myomectomy...or the LAVH (if possible). She told me removing the sizeable fibroid (not knowing if there were more or polypoid tissues also) probably would NOT stop the bleeding or the pain...Well, that clinched it for me. I decided if I was having surgery I'd have the one that would solve the most problems.

My uterus was enlarged to 12-14 week size--which I think once she'd seen that she would not have done the myomectomy anyway...BUT the good news was she was able to get it out vaginally! I don't want to know the details of that...I was very relieved I didn't have to have the abdominal incision, but prepared mentally I think to have it if necessary. I got to keep my ovaries. The path report said adenomyocis, fibroids. There was no endometriosis found. I had that lasered off 8 years ago and that seemed much more painful than the LAVH.

I did try several times taking Aygestin and Progestin, Naprosin, and took Aleves like jellybeans...Anyway the hormones made me feel like an ax murderer. I suppose my hubby would have been the most likely suspect...I told my doctor if I had to wait another 5 years or longer for menopause we wouldn't be married by then! LOL!

Good luck!
Mary W
P.S. I just turned 48 and had NO symptoms of menopause in site!! Totally regular like every 25-28 days with a week or more of misery. I feel like I'm getting back a chunk of time each month!
  #7  
Unread 04-14-2003, 02:31 PM
Here's my doctor's plan: (sorry for the long message)

Hi HappyCM3,
Thanks for your insight too.....I appreciate your concerns as far as getting info straight from the doc and to be sure that me and the doc are on the same page so to speak...When I saw the doc 10 days ago, he did discuss the possiblility of a hsyt. and he even asked me to consider if I would want to keep my ovaries or not. He further said that a myomectomy would not work for me....mainly because of his strong suspicion of adenomyosis. He also told me that that could not be 100% confirmed until they took out the uterus and a pathologist looked at it.

I dont want you to think that he is only leaning towards surgery either because he did talk to me about many other options for each scenario we discussed. I think my confusion came today when they said they were calling in Provera and that was not one fo the things we discussed at all when I was there in the office...then the nurse who seemed to have her facts confused only complicated the conversation. This is by the way, the second time I've had to talk with the confused nurse and she was confused the last time as well...so i dont think she was just having an off day...I dont think she should be making calls to people and "making up" info.

Thanks for helping me out...I appreciate it.
  #8  
Unread 04-14-2003, 02:36 PM
Here's my doctor's plan: (sorry for the long message)

Hi GalFriday/MaryW,
Thanks for your insight. Sounds like you've been thru sooooo much. I am willing to give this med a try but think alot like you do. If this is not gonna stop the pain or get rid of the growths, then take the suckers out...but as I wrote earlier, I guess there are steps the insurance would like to see first and would be willing to bet this is one of them...thanks again. I hope hubby and I can weather the horomone storms too.
  #9  
Unread 04-14-2003, 08:20 PM
My Provera experience

The first gyn I saw for my heavy periods put me on BCP for 3 months which didn't help, then switched me to Provera pills, (he wanted me to agree to the Depo shot, but I refused) Once I started taking the Provera, I bled non-stop, had a constant headache, elevated blood pressure (150/90), zero libido and what I can only explain as "mush brain" I am by nature fairly organized, but while on Provera I couldn't remember even the simplest task. I would start supper and then go to the laundry room to start a load of laundry and then go off and do something else, completey forgetting I had started supper until the smoke detector reminded me. Sometimes I burned two meals in one night I quit the Provera after 2 weeks and it took me 3 months to feel like my old self. After I stopped the Provera, I did some research on-line about Depo and was shocked at amount of people who described most of my problems and even had a few of their own. I was so glad I refused the shot, that would have been in my system for a minimum of 3 months! I know not everyone has bad experiences with it, but I always feel compelled to tell people how it affected me because the 's don't share these possible side effects with their patients. Good luck with whatever you decide.
  #10  
Unread 04-14-2003, 08:37 PM
Here's my doctor's plan: (sorry for the long message)

bitsyboo,
my story is somewhat a shortened version than yours. my gyn tried most of the things yours did but came right out after the 12 days of provera and did a d/c. after that I was fine....for 5 mos I had somewhat normal periods. then on feb 12 I started the heavy bleeding, clot passing, headaches etc.etc.I went back to gyn on feb 26. he scedule (actually his WONDRFUL officemgr) my hyster for April 22. I have been bleeding continously since the Feb date. Only during my "normal" cycle date do I pass the clots and bleed very heavy. I guess I am trying to tell you, my gyn seems to feel it wasn't going to get better for me so let's do what will.
Stef
LIW FOR A TAH DUE TO ENDO, PAIN
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