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Complex hyperplasia with atypia, my story Complex hyperplasia with atypia, my story

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  #1  
Unread 03-28-2004, 03:26 PM
Complex hyperplasia with atypia, my story

How many of us are here with Complex Hyperplasia with Atypia?

I'm just a surfer here mostly. My story:

I'm 29. I had a D&C for a polyp in April 2003. Benign polyp, benign endometrium. Yay. Periods didn't come properly...were very light( spotting here), only lasting a day or so, even on Clomid. I asked my ob/gyn about it. He said it might just be how my periods are now. Hmph. I asked for a referral to a Reproductive Endocrinologist for my infertility issues. The RE in November 2003 found a thickened endometrium, but thought I might shed it with my next period. I didn't. Was still very thick. He decided to do a D&C, Hysteroscopy with Exploratory Laparoscopy. My insurance would not approve him doing the surgery, and approved instead my ob/gyn. Fine. He did the surgery in January. At my postop, he announced the diagnosis ***Complex Hyperplasia with "minimal" Atypia***, and the treatment options. Since I had been trying to get pregnant for a while, he knew I would fight a hysterectomy, so he put me on Megace. I started megace near mid-January. I have an endometrial biopsy coming up April 12th to see how the meds are working, and a D&C in July. He said he would refer me back to the RE starting like May cause it takes so long to get a referral and an appointment sometimes. Guess that means he's expecting me to be A-OK come July. I hope he's right.

Well, that's my story thus far.

Pam
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  #2  
Unread 03-28-2004, 04:34 PM
Complex hyperplasia with atypia, my story

Hi,
my diagnose is based on an ultrasound for now. My Gyn thinks I have hyperplasia and I have to wait for a D&C with hysteroscopy to know more. My symptoms were first heavy periods, and since two years spotting for serveral days before and after my periods. Serveral family practitioners whom I asked about this during visits, or Pap told me that this is normal at age 32 ( now 34). When I finally went to the Gyn ( had to fight to get there), she said that this is not normal. I am pretty frightened and furiouse. My endometrial thickness was measured with 12 mm in a ultrasound ( from outside the abdomen).

I have another health concern, since the month my period decided to go crazy, I have problems with dizziness. Apparently, I have problems with eye tracking and depth perception. As with the concern about my period, I was not taken seriouse by my Doctors until now. Has anyone here experienced dizziness along with the gyn. problems?
Tinka
  #3  
Unread 03-28-2004, 07:15 PM
Tinka

I haven't experienced dizziness, until I started taking meds! Just wanted to answer that question.

I recently told my doctor that I was diagnosed with endometrial hyperplasia back in 97 after having bled for a month (quite heavily) and having an unltrasound done. He was shocked that a doc would make a diagnosis w/o a biopsy or D & C. So, I strongly suggest you do a biopsy or a D & C, a D&C has a higher rate of accuracy. I did a biopsy first which came up with complex atypical hyperplasia (prominent atypia), then a D & C which made the patholigists send the results to John Hopkins because they were not able to make a clear dx. John Hopkins said it was stage 1 Endo CA. So, get that D & C. I waited too long before being treated with hormones in the past, so this is my fault, and I'm learning the hard way.

I'm taking Megace, then another D & C in 3 months.

Feel free to ask questions! That's what we're all here for.
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  #4  
Unread 03-28-2004, 07:17 PM
Megace Side Effects

Anyone taking these experienceing side effects from this? I am, irritability, depression, fatigue, thirst, hunger, lots of urination, more (than I had before) facial hair, to name a few. Just wondering....

Thanks!
  #5  
Unread 03-28-2004, 07:55 PM
Complex hyperplasia with atypia, my story

Bep,
so you had this problem with hyperplasia for a long time too, before you had more tests? I am sorry to hear that you have problems with the hormones you have to take. Did you have a hysterectomy, and the ovaries removed? I will have a D&C, as the Gyn tried a biopsy at my first visit, but apparently I have a stenosis. I am pretty sure that I will have a hysterectomy, either because I have too, or because I don't think that I want to undergo hormonal treatments and multiple D&C's. Thank you for sharing your experience with me.
Tinka
  #6  
Unread 03-28-2004, 08:33 PM
Tinka

I haven't had any surgery. I was dx with endo ca on March 4th, and opted to try the hormones first. I don't think I'll ever use my uterus, so I too have thought about why have the hormones and all the D&C's? But I am terrified of surgery, so I'm going with this first.

Simple hyperplasia can be treated with Birth control pills some of which are not so bad. I did that back in 97, but stopped taking them after I got married and wanted children, my bad.

There are a few other threads you may want to look into in the "Cancer concerns" section, look around, you'll find more interesting things.
  #7  
Unread 03-31-2004, 10:09 PM
Complex hyperplasia with atypia, my story

Oh, yeah, I forgot to say I'm on 160 mg Megace for at least 3 months, doc wants 6 just in case.

Pam
  #8  
Unread 04-01-2004, 07:02 PM
Complex hyperplasia with atypia, my story

I was recently diagnosed with complex hyperplasia with atypia. I have had heavy bleeding for years and no one even bothered to tell me that it could lead to cancer. I havent started Megace yet, but I will within the next week or so. My doc is pretty hopeful about reversing it but you still worry. Im 26 and do not wish to have a hyst. But I will tell you that I did have dizzy spells. You may want to have your Hemoglobin levels checked as heavy bleeding can cause Anemia in some. If your levels are low enough it can cause fatigue caused by too much bleeding and I had dizzy spells and even passed out. I ended up with a 6 count for hemoglobin when 14 is normal. I had a blood transfusion and now the weakness and all has passed but I still have to keep it checked.

Lee
  #9  
Unread 04-01-2004, 07:34 PM
Complex hyperplasia with atypia, my story

Hello,
no my blood count is normal ( had low lymphocytes for unkown reason for over a year, but that is normal again). I don't bleed heavy, just have spotting before and after my period, so all in all it can take two weeks. My dizziness most likely comes from a problem with my brainstem, that causes vision problems. I don't know what this problem would be, had an MRI an that did not show signs of MS or tumor. I do wonder if it has to do with the abnormality of my cycle, as both symptoms showed up in the same month. I guess I have two rare health problems, hyperplasia and dizziness caused by a central problem. Just great.
Thank you for asking about the blood count, because that could certainly lead to dizziness. I hope you will be able to treat your hyperplasia. It stunnes me that many Doc's seem to be obliviouse to problems that we have with our periods.
Tinka
  #10  
Unread 04-04-2004, 08:27 PM
hi again

Well I hope someone finds out what is going on, and your right alot of Docs do not spell it out for you. Had someone warned me earlier on about cancer instead of saying "take the pill" I would not be sick now. I however was told during a sec. opinion that i had an 80%reversal rate so I hope that Megace will help. I will say a prayer for you and hope your dizzy spells will fade. God Bless Ya!

Lisa
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