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Unread 01-21-2008, 02:46 PM
Any regrets?

I know this sounds crazy but I was just wondering if there were any other sisters who are under 40, single, no children and are really regretting your decision to have hysterectomy. I have had about 6 years of on and off diagnosis of hyperplasia with atypia, I would go through a course of megace and all would be fine and then a year ago I started having more bleeding and again on d&c found to have atypia, my gyno (3rd one) sent me to a gyn/onc who strongly advocated hysterectomy - I balked and chose another round of megace - after 6 months I was still having bleeding and decided to have the hysterectomy. Today I had my first post op appointment and recieved the path report - NO evidence of hyperplasia (let alone atypia) all it showed was a slightly enlarged uterus (300gr) NORMAL ovaries, adenomyosis and 1 medium sized fibroid - I feel sick with regret and am angry with myself - I guess this is a normal reaction but would like to know if anyone else has experienced similar emotions...On the upside I am healing well with very little complication (thank God!) and am cleared to start swimming - and it hasn't even been two weeks yet (JAN 8TH), mild pain/stiffness/fatigue and some insomnia. would highly recommend da Vinci Hysterectomy to anyone who qualifies!!
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Unread 01-21-2008, 04:10 PM
Any regrets?

I am so sorry that you are in so much pain emotionally. I have not had the same experience but I thought that you could use some support. I will be praying for you tonight.
Unread 01-21-2008, 05:41 PM
Any regrets?

Hey Jazzyctrn. I read your post and finally found someone in the same situation. I had my TAH/BSO 09/26/07 for the same reason: endometrial hyperplasia complex with atypical cells (25% focal, whatever that meant!). Unlike you, I did not pursue other options like the treatment that you mentioned as that option was not offered to me. I was led to believe that treating my condition with hormones would be contra-indicated and that the normal treatment is via hyst. Normal? I did some research but what was I to know. Hearing your story I wish I had pursued other alternatives. At least I would've had a few more years with my uterus. Perhaps I would've just postponed it but I would've preferred that. Yes, I do regret my hyst for these reasons (and more). My path report did indicate the atypical cells but I still regret it. I should have waited and tried other options. My faith tells me God works all things for our good. I'm really trusting him on this one. My heart goes out to you. I know what it feels like. Hang in there.
PS: what was the megace treatment like? Any side effects? Complications?
Take care.
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Unread 01-21-2008, 06:12 PM
Any regrets?

Hey Jazzyctrn- I had my TAH/BSO on 12/6/07 for the same reason: complex endometrial hyperplasia with atypia. My GYN said I had no choice but to have a hysterectomy and to have it done ASAP . I cried and pleaded with him not to have it done, but he insisted I needed to have it done, so I did because I had a lot of faith in my GYN and all the info I found on the subject pointed to hysterectomy. AT the time of my surgery, the pathology report indicated that I did indeed have Stage I cancer, but after sending everything out, the final path report indicated no cancer. I share the same feelings with you, could I and should I have waited?, I don't know, my inner gut feeling says maybe I should have and perhaps gotten a second opinion. I kind of feel betrayed by my gyn. When I asked about which path report they go by, his response was that you can get different opinions from different pathologists, but the surgery was done and I was cured. So, who knows, I sure hope this was a necessary surgery for me.
Unread 01-22-2008, 08:22 AM
Any regrets?

Heidi, Pam - first of all - thanks for your support - you both did exactly the right thing. I am a medical professional so I did have access to a lot of information that gave me some options but the general consensus of all the studies is that the best treatment for hyperplasia with atypia is hysterectomy - absolutely. Megace is a synthetic progesterone (my body wasn't producing any) and can oppose the estrogen that feeds hyperplasia and eventually creates cancer cells, Pam - even a question of cancer such as your preliminary report indicates that you were definitely heading in that direction - megace might have stalled it but you would have had to stay on it indefinitely...and then had the oncologist said if I didn't have the hyst I would have to stay on megace until I naturally megace is used for people with HIV to increase appetite - being overweight to begin with you can imagine how thrilled I was to be put on a medication that drives appetite and weight gain!!! I eventually agreed to the hysterectomy because I had non stop bleeding for 10 months - heavy, draining and frustrating - had I known I had cleared the hyperplasia and it was adenomyosis that was causing the bleeding I may have stuck it out longer - but now it is done and I am trying to let myself off the hook - I have gone through this long enough I guess and still had little to no chance of ever having oncologist has referred me to a counsellor - not sure if I want to go - probably will. I thank you guys for sharing with me- sometimes it's enough to know you're not alone!
Unread 01-22-2008, 07:12 PM
Any regrets?

I am kind of in the same place in some respects. I am 27 and exactly two weeks post op. I was told a year ago that I would be unable to have children. My gyn did everything that she could think of and decided that my only recourse was to have a TVH with BSO. I have no children, and now I never will. At first I was very worried that my husband would think that I wasn't a complete woman. I was worried that his family wouldn't think of me as a good addition to his family. He has one brother who has taken 6 years to have a child, a girl. My husband has two daughters with his ex-wife. My husband and his brother are the only men in their family to carry on their last name. I was so afraid of the pressure that I would get or the looks I would get when they all found out.

Fortunately for me, I have the best in-laws. I only hope that you will be as lucky as I was to find such a wonderful group. I even started corresponding with his grandmother who had a hyster in 1989.

I geuss in a very long way, I am trying to say that sometimes I do get the what-ifs. Everyone does and/or will. Everything happens for a reason. You should never have regrets. Everything you do and everything you have been through, will make you who you are. It may sound hooky, but I really do believe it.

Someday, you will see that at this point in your life, you were meant to have this done. In my case, my pathology came out completely normal. Not one thing wrong. No cancer, fibroids, nothing. However, I won't be in pain anymore. No sleepless nights. I was meant to have this done, because I wasn't meant to live my life in pain. Neither were you.

Unread 01-23-2008, 08:17 AM
Any regrets?

Thanks Janet - I think I needed that - Bless you and your supportive family!
Unread 01-23-2008, 08:56 AM
Any regrets?

Hi Jazzy,

I totally understand how you feel, I went down this same road too. I am a little older (44) and this atypical complex hyperplasia suddenly popped up on a biopsy. The only symptom I had was heavier than normal periods and some pain.

I went round and round about this for seven months. I had six pathology reads from major medical institutions. They disagreed with the first report. The repeat biopsies came back fine.

Eventually, they found that my problem was bad fibroids. One took up half of the uterus. I actually went to an in vitro fertilization doc, to find out what my chances were of becoming pregnant, and he said they were only about 5% at my age. I went ahead with a TAH, and they found no hyperplasia or carcinoma in the pathology (I had two oncologists read it). I work in pathology, so I really wanted to make sure it was o.k. As it turned out, I had more firbroid than normal tissue, and I probably would have miscarried even if I had become pregnant, and the risk of birth defects and uterine rupture were very high.

I do want to tell you that the oncologists I saw made a very good point to me. A biopsy is just a small sampling of what is truly going on. There is no way to tell from a biopsy that nothing is going on in there, that is why they have to keep repeating it. I saw a balance between living with heavy bleeding and the worry about a biopsy every few months, with being free of this and going on with my life.

I really think that you did the right thing. I know so well how hard it is to want to have kids, I really wanted them and I saw it as the end of a dream. I took it pretty hard, and I did talk to a counselor. I do think it is a good thing to do, as it helped me realize that it was far better to face it and grieve now than to stuff it down. And now, I do feel a little better and am starting to work my way back to feeling better.

I just tell myself that maybe there is a very special little child out there who really needs a good mom, and that maybe God has selected me to be that person. I also tell myself that maybe this little child will bring me some amazing blessings that I could not have had any other way.

I will pray for you too. I know how hard it is. I was really mad at God for a long time, but now I realize that part of faith is going forward when it doesn't make sense. Maybe some day it will, though now it seems unfair. I don't understand it all, but maybe some day I will.

God Bless you Jazzy!
Unread 01-23-2008, 05:01 PM
Any regrets?

Thanks so much jgtalk,I am feeling better simply knowing that I'm not alone in these emotions and that things will get better - I am a huge believer in "the Plan" and that there is a reason for all this...with this support I know I can move forward...Thanks again, and Bless you!
Unread 02-07-2008, 03:23 PM
Any regrets?

Just wanted to update; thanks to the wonderful responses and the massive support on this website I finally feel like I can move forward, I realize there are many other things for me to accomplish and having the pain, bleeding and fatigue behind me is the best medicine. I know it will take time to be at peace with my decision but I have the tools and the suport to move forward. I continue to heal well - have had a setback as I slipped on some ice 2 weeks ago and herniated 2 disks (yeah - timing is everything) but even with that I am feeling better and hope to get back to work next week! Take care everyone and thanks again!

Trish, 39, daVinci TLH, Atypia resolved on final path, adenomyosis, fibroids

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