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Scared and concerned about past endometrial hyperplasia Scared and concerned about past endometrial hyperplasia

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  #1  
Unread 02-12-2001, 09:37 AM
Scared and concerned about past endometrial hyperplasia

Hello all!

I decided to join this board because of some concerns I have. I am not scheduled for a hysterectomy, nor do I really have a diagnosis of anything, but I am feeling very anxious about some gynecological problems I experienced in the past. I certainly hope that I still still welcome here!

I am 27 years old with a history of endometrial hyperplasia. Many years ago I had anorexia nervosa and lost so much body weight that my body actually stopped making it's own female hormones. I was put on estrogen and progesterone for many years and decided that I didn't like the nasty side effects I experienced from the Provera and pretty much just stopped taking it without telling my doctor. Well, needless to say, I didn't have alot of periods during this time and I ended up having a vaginal ultrasound that showed endometrial hyperplasia. I had an endometrial biopsy (ouch!) and was told that it wasn't cancerous, but I had to take a course of Provera to shed the lining. Soon enough, the problem was history.

Well, I ended up going to a new endocrinologist a year later who increased my dose of estrogen because I was having hot flashes, but kept my Provera dosage very low because I didn't tolerate it all that well. Again, I wasn't having many periods, but at the same time I feared telling my endocrinologist this because I knew he would increase the Provera dosage and I would be miserable from the side effects. Stupid, I know. A year later I began to bleed profusely (while out in public, I might add!) and these huge clots are falling out of me. My mother and ex boyfriend rush me to the ER and I'm told that my estrogen dosage was much too high for the amount of Provera I was taking and that I had a serious build up of the lining because of this. Surprise, surprise. I ask the ER doctor if I should have an ultrasound done or be sent for a biopsy and he said it wasn't necessary and prescribed me a course of Provera to shed the lining. I assumed he knew what he was talking about and left it at that. Can't say I really wanted to go through another biopsy, as they are so painful!

Well, it has now been nearly six years since I was in that ER and for some reason I have begun to worry that I should have insisted that the hyperplasia was thoroughly investigated after having had hyperplasia once before. I should have known better. I've had two transvaginal ultrasound in the past two years that my own MD sent me for and they both came back showing a normal uterine lining. I told my MD about the endometrial hyperplasia that was never looked into six years ago and he insists that aslong as the lining looks okay now, that I have nothing to worry about. He says that an ultrasound would have shown abnormalities if I had endometrial cancer, such as a thickended uterus, enlarged uterus or tumours. Yet I've heard that only a biopsy can rule out endometrial cancer. I suppose I started to worry about all of this in the past couple of years because I suffer from irritable bowel syndrome and have an irritable bladder and a part of me keeps thinking, "Could the cramps I get whenever I eat or have a full bladder be from undiagnosed cancer?". Of course, my doctor thinks I'm silly to worry so much about this and I'm beginning to wonder if I really *am* overreacting and just fearmongering. Should I just trust that my normal ultrasound results are good enough and let this rest or should I insist on having a biopsy done?

I'm sorry that this post is so long, but I just didn't know where else to turn but to those who have dealt with the same fears and who might know a few things about the symptoms of endometrial cancer and maybe even a few things about the tests used to diagnose it. I'm so thankful to have found this board. I can see that all of you are so warm and so wonderfully supportive of one another and that is just fantastic to see. Bless you all. I look forward to any responses and communicating with you further.

Many blessings!
Oceana
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  #2  
Unread 02-12-2001, 12:54 PM
Welcome Oceana

Hi

It sounds to me like your doctor is right on track and that you can stop worrying if you want to. I had hyperplasia for many years with all kinds of biopsies and provera, which I finally just stopped taking for the same reason you did.

I do believe that if you are having PAP smears AND you have had ultrasounds that there is nothing to worry about. Those biopsies that they do in the doctor's office only tell what's present in the area they biopsy so they're not always all that helpful.

I took my uterus right through menopause, bleeding, clots and all, and just recently had it removed because of suspected ovarian cancer!! Turns out I had adenomyosis all that time, which wasn't diagnosed until recently.

Hope this gives you some reassurance. Just keep in touch with your doctor regularly and trust what he/she says. Remember, uterine cancer is usually slow growing and stays contained for a long time, too. It's one of the more easy cancers to diagnose and treat. So even if it happens (and chances are it won't) you'll get it early with the kind of monitoring that is being done for you.
  #3  
Unread 02-12-2001, 04:10 PM
Scared and concerned about past endometrial hyperplasia

Arctic,

Thanks so much for the welcome and most of all for your words of comfort. I feel much better about my situation after reading your post. I did end up making an appointment with a gynecologist that I saw many years ago. I see him early tomorrow morning. I'm hoping he will either put my fears to rest and say that a biopsy isn't necessary or do a biopsy to look into things further. I need the peace of mind either way. Of course, I'm much rather go without the biopsy because they aren't too pleasant!

I sometimes feel like a complete idiot for putting myself in the position I am by stopping the Provera even though I was aware of the risks of taking estrogen alone. But the side effects of the Provera were just too much to bear and there were really no other alternatives to it. Not at the time anyway!

I too have heard that uterine/endomterial cancer is very slow goriwng and it can take a very long time for hyperplasia to turn into cancer, if it does at all. That is definately a good thing considering it's been a long six years since all of this happened. If I did have cancer growing in my uterus, atleast the chances of it being in the early stages are good.

May I ask what was causing your hyperplasia, Arctic? When you say you had it for many years is that because it went untreated or because it didn't respond to the Provera? I feel for you having had to go through so many biopsies. I've only had one in my life and I swore I would never have one again because it was so painful!

I'm so sorry that you went through the scare of thinking you had ovarian cancer. That must have been such a horrible and stressful time for you. So glad that you didn't have it!

Thanks again for reassuring me. I can't tell you how much it means. Bless you. I will definately let you know how things go with my gyno appointment tomorrow.

Take care!!

Oceana
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  #4  
Unread 02-12-2001, 04:33 PM
It's me again

Hi

Glad you got some reassurance I think my hyperplasia was probably due to an imbalance in hormones as I had irregular periods for most of my menstruating life. As for the Provera, my guess is that it didn't help me a lot because I had undiagnosed adenomyosis. But the hyperplasia eventually went away, as biopsies didn't show it later.

Oceana, I don't know how long it's been since you had a uterine biopsy, but they aren't as painful as they used to be. If one is advisable, just do what I tell you: Think of all your muscles being relaxed and breathe evenly through your nose. That's it. It's done.

Thanks for your concern, but to tell you the truth, I was never afraid about this last episode. I knew it was possible I had cancer but I also believed that if I did it was early cancer, unlike what my doctor thought when she saw what faced her when she opened me up. But that was HER problem! I was asleep and knew nothing! By the time I knew anything the biopsy results were in and we knew I didn't have Stage III cancer. Since I did know that I had tumors that are often malignant, I knew I had to have a TAH/BSO so it wasn't hard to face. It just had to be done and I am grateful that it was able to be done quickly and that things went so well.

I hope your doctor's visit goes well and that you come away reassured. I'll be thinking of you.
  #5  
Unread 02-13-2001, 08:04 AM
Scared and concerned about past endometrial hyperplasia

Hey Arctic!

I just came back from seeing my gynecologist and thought I'd let you know how things went.

My appointment was pretty uneventful. I told him my story and asked him if he thought that a biopsy was in order. He felt that it wasn't but said that he would do one if I really wanted him to do it for peace of mind. Of course, I never *really* wanted to have one done and figured I'd go through with it only if he thought it was definately something that should be done. He told me that because my last two ultrasounds were very normal, that I shouldn't have anything to worry about. He said that if I had endometrial cancer, my uterine lining would be thick and possibly even bumpy. He then told me that the original endometrial biopsy I had did not have atypia (sp?) even though the lining had been quite thick and that the second time I experienced hyperplasia there probably wasn't any atypia either. He said that there are different types of hyperplasia and some are quite benign and have a very low chance of turning into cancer even after many years and then there are types that are much more prone to turning into cancer. I've never been the luckiest person, but I guess this is one area I really did luck out!

Of course, there's still this little part of me that thinks nothing but a biopsy can completely rule out cancer. The fact that the gynecologist is quite old and seems a wee bit forgetful and not quite thorough bothers me a bit, but perhaps I'm just being a little too paranoid about it. I went to him because I also wanted to discuss the bladder pain I get and also pain with intercourse, but he didn't really seem all that concerned about looking into it. I think I'll have to ask my doctor to send me to a new gynecologist to look into these other problems.

He did a PAP test and internal, which wasn't very comfortable, but definately necessary. I've always experienced pain when the speculum is put inside and also with the internal itself and he noticed that when swabing my cervix, that it bled almost instantly. I've had this problem in the past also. He took a good look at my cervix with the microscope and said that my cervix bulges out and exposes the sensitive, vascular area of the inner cervix and said that I was born with it. I'm not so sure about that because I haven't always had this bleeding with PAP tests. He said that I get pain with the internal because I have a tipped uterus. I couldn't help but think, "Is there anything that's *not* abnormal about my reproductive organs?!!" Hehehehe.

Well, the only thing I have to have done is another transvaginal ultrasound and if that comes back normal. I guess this whole ordeal is over. Thank God! I can't thank you enough for being so kind to me and helping to reassure me when I was feeling very anxious and scared. It meant so much to me. I wasn't sure if I was going to have a biopsy done today, but as you know, I don't like them at all. My husband was a sweetheart and offered to take me so that he could hold my hand through it. But your words kept echoing through my head all night and all morning about how I should think of all my muscles being relaxed and breathing evenly through my nose. It really helped to calm me down whenever I thought about the biopsy and I even practised doing just what you told me several times! I didn't have a biopsy, but it helped to relive some of the anxiety I was feeling. And for that alone, I am very grateful.

Thanks so much for sharing your own story with me. Again, I'm so glad that you did not have cancer and that you are now living without the pain of the adenomyosis everyday.

God bless you, Arctic!

All the best,
Oceana




  #6  
Unread 02-13-2001, 05:57 PM
Great News

Oceana,

I'm so glad to hear things went so well today. I didn't think you'd BEG for a biopsy.

Yes, it does sound like maybe you will be more comfortable with another gynecologist, but I think at least your concern about cancer can be put to rest. An ultrasound is going to show a lot about the condition of the endometrium and like I said, a biopsy only tells something about the places that are biopsied.

I'm glad you were able to use my suggestion about breathing and relaxing. If you keep practicing that you'll be able to use it in all kinds of situations!

Good luck to you!
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