New here, could you some advice....endo hyperplasia w/ atypia

Hi Ladies, I've been reading this board for a few weeks now while waiting for the official word....here is my story: (sorry a little long)


I am 29 years old, married, no kids. In my early 20's I ballooned in weight without much reason for it and fought it for years. I also developed facial hair, bad adult acne, a few skin tags, only one or two periods a year since puberty, etc. For years I went to several doctors and not one of them could offer anything other than the advice to diet and exercise (well Duh!!) and a few offered antidepressants. :burning: Well, last year after googling my symptoms I learned of PCOS, polycystic ovarian syndrome, and just knew that was my problem...the symtoms fit to a T. (Isn't it sad that you have to diagnose yourself these days?)In November I found a specialist (a reproductive endo/ob-gyn) who is one of the leading docs for PCOS in the country. I made an appointment but it was for 6 weeks out.

A few days later I got really run down feeling, excessive thirst, frequent urination, blurry vision. A co-worker said those are the symptoms of diabetes and to go to a doctor NOW. So, made an appointment with a new GP and the blood test came back with my fasting blood sugar at 480! I was a diabetic. (Untreated PCOS leads to diabetes) They sent me to the hospital for a crash course in managing diabetes. My whole world was turned upside down. I told the diabetes doctor that I thought I have PCOS and she said, yes, definately. I started on Metformin and after about a month the weight slowly but surely was melting off. My blood sugars went down to normal rather quicly and stay there without much effort....Luckily I don't need insulin or any other diabetes drugs other than metformin, which is prescribed for PCOS anyways. Oh, I was also hypothyroid...and none of the stupid docs told me that either!!! All that effort I put into trying to lose weight was just all in vain...no wonder I was just spinning my wheels.

I kept my appointment with the RE (PCOS specialist) and treatment was to continue on the met and started taking YAZ bcp to regulate my periods....which only came about twice a year since I was 11. My first period on Yaz started April 10 and by May 4 it was still going strong and the heavy bleeding and cramps were getting horrible. I expected it to be heavy since I hadn't had one in a while. Well, After days of vomiting from the pain, doubled over, not being able to leave the house because the flow was getting worse, I called the docs office and he had me come in the next morning (on Saturday). He did a vaginal US and the ling was 38mm thick. In Dec. when I first started seeing him it was 19mm thick. I think he thought the prometrium and then the Yaz would take care of it. So he said I would need a D&C. That was done at the hospital that Tuesday evening. Afterwards the pain was GONE!! I don't think I realized how bad the pain had been until I was back to normal. I don't know how I tolerated it so long.

Well, after reading here and other places online, I see that 38mm and even 19mm is REALLY thick, and I realized that I had all the risk factors for Endo cancer...the weight, PCOS, diabetes, early menarch, etc. So, for two weeks I worried a bit about it.

Yesterday was my follow-up appointment and the doc, after trying to sugar-coat by just saying the cells where a little abnormal, I finally got out of him that the pathology showed endometrial hyperplasia with atypia. I don't know if it is simple or complex. The tissue was sent to M.D Anderson for a second opinion and the results are not back yet.
He said that a few months of (I think he said - started w/ a P anyways) promarin/provera would probably take care of it.

Okay...so my issue is....I think he may be too concerned with preserving my fertility due to my age and since i have no kids. I do not want children...at least not biological ones. I have a lot of health issues and mental illness in my family and I DO NOT want to pass that on. My hubby and I have always agreed that adoption was our plan A with starting a family. With him specializing in fertility...I don't think doc understands this since most of his patients desperately want kids.

If M.D. Anderson comes back with the same DX, should I go ahead and push for a hysterectomy? If the options are surgery now (so over and done with it)...or meds now and possabilty of surgery and chemo or radiation later, I would rather take it out now. I think by doing it now a lap assited vaginal hysterectomy would be fine...if they can leave the ovaries...but it sounds like if we don't and later end up with cancer, a more invasive surgery would be needed.

Would a hysterectomy be overkill for endo hyperplasia with atypia?

My hyst was done for what was originally thought to be Hyperplasia with atypia.

We didn't find out for 100% sure it was cancer until surgery.

So, my answer to your question is No, a hyst is not overkill. You are probably correct in that they are thinking of preserving your fertility.

I live in NE Texas and came to Houston for my surgery. I didn't go to MDAnderson, but my gyn/onc trained there. Another hystersister here had the same gyn/onc as me, and we both love her.

I think you need to go see a gyn/onc for a second opinion.

Good luck to you in your decisions.

Thank you for the reply. Who was your doctor?

My doctor is too soft spoken and doesn't want to tell you anything bad...I hate that....He is a great guy, but I just wish he would level with me sometimes. He also has a very busy office and some of his staff really just are not too concerned and you have to stay on top of them to avoid falling through the cracks. That is the only thing I don't like about his practice.

I guess right now I am in just sit and wait mode until we hear from MD Anderson...which for me is the toughest part. Waiting the last two weeks was hard enough before I even knew there was problem...now I know there is I just don't know to what extent and have to wait another week.

I don't think we're allowed to post Doctor's names on this board. (off to check the rules real quick).

yes, we can't recommend doctors on the board.. they say to keep that to email. I sent you a PM.

got it....thank you!

Nope, not overkill by any means. If it is cancer, make sure you also have an oncologist during the surgery to do lymph dissection and such.



Love,
SolarWind

Hi,
I am in a very similair situation only I started with hyperplaisia without atypia and have tried numerous medications and now have an iud to try and treat the hyperplasia that has progressed to "with atypia" all the reading I have done on the atypia it does seem logical to have a hyster. I have other medical conditions so the doctors are almost afraid to do the surgery. I also ran into the same problem with the doctors thinking I wanted to preserve fertility I am forty and it took me a good year to convience them that fertility is not a factor! So do not give up in making yourself heard!
If you have not yet seen a gyn/onc you really should and no a hyster. is not overkill for complex hyperplasia with atypia.

I saw the doc today and he really wants to just try the progesterone first. Then another D&C and see what happends. I don't know.

I was thinking of you today and wanted to ask if you had made an appt yet with a gyn/onc, but didn't because I thought it was probably too soon.

It might not hurt to take the progesterone until you get into seeing another doctor.