atypical cells and endometrial hyperplasia (Feb 2004)

Dr says she thinks it is endometriosis and that the mass on my ovary may be that or it may be a cyst or polyps. She is scheduling a D&C, laparoscopy & hysteroscopy next week. Then we see after she does her exploration of my insides. Perhaps that will fix things. The lowe abdominal cramping and lower back pain have been getting progressively worse so I hope this will clear it all up. She said 20% do not have reoccurrence (these are not good odds). Otherwise the next step is a hyst. If this will cure the migraines I think I am more than ready to take this step. The migraines have really been hard to control and I'm taking a lot of medications. Anybody with similar experiences that can help me out?

I have complex endometrial Hyperaplasia and had polyps and fibroids. This was all diagnosed thru a uterine biopsy. My dr put me on provera to stop the bleeding for three months then have ultra sound. YOu cannot have ultra sound for six weeks due to uterus being messed up. If anyone has to have a biopsy take some ibuprofen or tylenol it hurts a bit like cramping. The provera did not work for me and I was a low dose of 20 mg a day. The bleeding slowed down fora day or two then picked up. I had side effects that were making me miserable memory loss leg cramps etc. My dr put me on megace 40 mg twice a day. I went thru hell of withdrawl during Christmas...this was so fun...headaches etc. Once the side effects calmed down I was ok. The megace stopped my bleeding for two days then started to pick up after the new years. two weeks later I was hemorhaging again. I had to have an emergency d and c (missed date of ultra sound by three dates). They were able to get the polyps but not all the hyperaplasia cells. They put me on lupron dep to stop the bleeding to put me into full blown menopause. I experienced heavy bleeding for the first week then it slowed down a bit. My dr took me off of megace two weeks ago and within a week I had to go back on it as my bleeding picked up again. These hormones have not worked for me for the hyperaplasia or the fibroids. I could have had other options for the fibroids but with the hyperaplasia still around I chose to have a hysterectomy wtih keeping of ovaries but still deciding on cervix keep or lose it. Surgary is Fri march5th. I hope you try all solutions before hyst...but i made this choice as I am tired of the bleeding. They cannot do an ablasion of my uterus as is it is huge. Your not alone with this hyperaplasia. Get a second opinion and you as a patient have aright to make your own decisions and plan in your own medical care. There are two legal acts out there one is called the patients bill of rights and the other is the patients rights. Read them if you don't know what they are. I am in nursing and have found some drs and nurses to be hard to get your point across. Keep pushing. Talking until someone sees what your body is doing. My Internal medicine dr did not even thoroughly check me out and said oh well sounds like peri menopause and sent me to a support group. Two weeks Later im hemorhaging on a bus. long story. But i was so angry at his lack of referring me. I was the one who asked for the ob gyn and almost could not get in on and emerg basis. I had to practically tell that advice person off...just stand your ground you know what your body is doing and eventually you will be heard and get proper treatment. Having been there I understand all of what you are all going thru. keep me posted on your progress and diagnosis.
teresa

I too have complex hyperplasia but with atypia. I have found that the Provera, medroxyprogesterone really did not work for me. Kept bleeding no matter what amount I was taking. I could not take the side effects either. Terrible and scary mood swings and I could barely remember my own name!

I have been moved to a drug called Prometrium. The pharmacist told me this is a more "natural" form of progesterone. I believe those others are synthetic. It has been much better for me. I stopped bleeding for a while and when i have bled, it has been much lighter. I like some of you ladies have had very long periods that are all together too close together.

If one drug does not work for you, try another. I am all for trying drug therapy instead of surgery, to me, it is important to try to keep all my parts as long as possible.

Hope this has been helpful. Hang in there and keep asking questions and researching as much as you can. The more you know, the better and informed decisions you can make.

thanks joyce for your advice. But I am going ahead with surgary as i have fibroids that are causing bleeding. I did not know about the other drug that is more natural. They also put me on lupron which was supposed to stop the bleeding and put me in chemical menopause to buy me some time. It did not work...man these mood swings. Glad to know I am not the only one who experienced memory loss on provera. I was forgetting bus stops that I have been riding for years. Just a general spaciness that was scarey. Felt like early alzheimers to some degree...even though I have no idea what that is like.
teresa
gl on keeping everything.....hope your hyperapasia stays under control.

I was also diagnosed with simple hyperplasia. The lining was so thick that the doctor could not tell if there were any fibroids or polyps during the sonohystogram. My doctor put me on Prometrium for 12 days. During that time my bleeding let up somewhat, although it never completely stopped. Two or three days after the last Prometrium, I started bleeding heavily again ~ even more heavily than before. But it only lasted for about a week and then stopped completely. After 2 months of non-stop bleeding, I was so relieved! An ultrasound at this point showed that I still had a heavy lining, and the doctor recommended a few options. Since she also found a large ovarian cyst during the sonohystogram, with an elevated CA-125, we decided on a laproscopic removal of one ovary and a D & C for the hyperplasia. I understand that I may still end up with a hyst., but at least it may buy me some time until I have to pursue that option. I am not opposed to a hyst, but I am mid-semester in college classes and really don’t want to have to forfeit the time I have put in if there are other options. (I am trying to finally get the college degree I started working on 20+ years ago – and I will only have four more classes after this semester! Hallelujah!) So, the lap. and D & C for now, and if that doesn't work a hyst later. At least it may grant me enough time to finish this semester.

Em2,
I also am trying to buy some time. At 35, I'm not ready to give up my parts just yet.

I am so sorry to hear of your ovarian cyst. I had one rupture on me when I was about 23. Talk about a lot of pain!! I know you do not want any of that.

Congratulations on haveing only 4 classes left!! Good for you! I don't blame you for wanting to hold off until later. You have worked too hard for the classes you are taking just to let them go. It must be difficult to deal with the school load and all this other stuff at the same time. You must be one strong lady.

Isn't is just such a relief not to bleed all the time? Whew! Even if it is for just a few days or a couple of weeks, I'll take it.

Hope every thing goes well with your proceudres and you can get back to your school work with out any problems to hold you back.

I would be interested in how Em2 is doing. I hope she was able to complete her semester. I too was an adult student, receiving Bachelor degress at age 40 and graduate degree at 50.

Now I have had 2 d&Cs and been on provera for 3 months. I also have fibroids and small cysts on ovaries.
Now after 2nd D&C still no atypical cells, still just complex, but dr. is concerned, lining of uterus has reduced but not much.
Is there anyone with a similar situation? I don't want to risk my life, but also not ready to give up my body parts.

Has anyone been on more rounds of progesterine?

Also thanks for the insight into the possible memory loss while on provera. I work with the elderly and was beginning to think I had early onset alzheimer's disease after a few episodes of memory loss!

These are all such individual situations, but it is good to know that others have been through it. Best wishes to all.

Sherry,

When I went in for my pre-op, the doctor checked me again to make sure nothing had changed before the surgery. Well, it had! My cyst had completely disappeared, and the lining was more normal. We decided to cancel the surgery and wait & see. Since I have the hyperplasia (it is simple, with no atypical) she wants to monitor me. I am now on Prometrium for 12 days every month, and will go back in August for another sonohystogram & endometrial biopsy. My cycles have not exactly gone back to normal, so I may still be facing surgery at some point.

For now, I am grateful that I was able to finish my semester. I have two more classes to take next semester (fall), and then I will graduate!! (YAY!!) I started college in the fall of 1977, then took some time off (ok, a LOT of time off…), and have been going back part time for several years now. I am SO glad to finally be seeing the light at the end of the tunnel!

Margaret

Dear Margaret,

That's great! I'm happy for you..

Pat

I have complex hyperplasia with minimal atypia as well. I'm 30. Doc put me on Megace. It's a high level progesterone. I take 140 mg a day. AFter 3 months, it has decreased to complex hyperplasia WITHOUT the atypia! yay! Anyhow, 3 more months and we'll do another D&C and find out if it's gone.

I've heard of 3 drugs used for the condition... Megace, Provera, and Prometrium. All similar somewhat. Prometrium is the weakest of the 3. Megace is the most popular choice, from reading medical journals, and it often gets rid of the hyperplasia ENTIRELY within 3 months. I wasn't that lucky, but some are!

Good luck! There is hope!!!