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Hello. I am scheduled for a total hysterectomy on March 8th and I am having many fears and hoped some of my questions might be answered here. I am 56 years old, have no discomfort of any kind but in October for irregular bleeding a D & C with hysteroscopy was performed and the results came back: endometrial polyp removed showing complex hyperplasia w/o atypia, plus I have 3 cysts on one ovary so my gyno highly recommends removing uterus and ovaries. I was only told that my alternative would be to go on megase and have d/c every 3 months! I'm feeling pressured to have the surgery, but I wonder if anyone out there has had the same as my diagnosis and what you did or didn't do and your outcome. Thanks for your help, TJoyce
Hi T Joyce- like you I had a d & c and hysteroscopy in November which shows that I have hyperplasia which could leave lead to Cancer. I was advised to have a Hysterectomy or d & c s every three months. Have opted to have the Hysterectomy in a few weeks time. Am already a Brest cancer survivor and didn't want to wait till the Uterine problem got much worse. You ahve to decide what is best for you and the decision that you can live with. Best of luck - let me know how you are doing .
Thanks for sharing your story with me. I was supposted to have a hysterectomy on March 8th but I'm going to try to buy some time to look into what options I may have. I was told that I would need a d & c every 3 months also. Do you also have complex hyperplasia without atypia? Sorry to hear you had to deal with breast cancer too, but I'm glad you have done well so far. Do you know what type of hysterectomy your doc will perform? I wonder which one is considered the best. I have read some impressive results from the LSCH, I think the laproscopical supracervical hysterectomy, as the cervix is not removed but my doc doesn't so that kind and would have done a vaginal removing everything, but I also worry about that too. Anyway, I would be interested to learn more about how you are doing and how it goes. Thanks and best of luck, TJoyce
Hi T Joyce- I was told after the D&C in Nov that the womb lining was showing early changes . Although my Doctor has not used the word atypical I am guessing that it is atypical hyperplasia. The Gyn has recommended that i have a TAHBSO- I guess to prevent any other problems developing at a later date. I was shocked at first but now think that I have made the right decision in opting for the surgery. Just hoping it is all over soon- the waiting is not easy.
Hi again Geraldine, Thanks again for your reply. So, if I understand correctly, since I am not very savvy yet with all of these abbreviations, you will be having a total vaginal hysterectomy and what do the other letters mean? Could you find out if your hyperplasia was with or without atypia? Also, if you wouldn't mind telling me which state do you live in? What is the date for your surgery? I have been to the HERS website and have had a couple of counselling sessions from Nora who seems to be against having a hysterectomy for this condition, direct opposition from my medical doctors so I am betwixt and between and basically confused! Toni
Hi T Joyce- I can certainly ask at my pre op appt on 14 Mar if my hyperplasia is atypical.I was told by the Gyn that the changes found were precancerous. I am scheduled to have a total abdominal hysterectomy (TAH), with the removal of both ovaries (BSO)on the 24th March .
Why did the Councillor you saw disagree with the medics opinion ?
Hi Geraldine, So nice to hear from you again. Someday I hope to visit Edinburgh, Scotland! Have you ever been to the states? I realize I'm a bit off topic...Anyway, both w/atypicalan or w/o atypica complex hyperplasia are considered precancerous, but with atypia is shows the cells more advanced towards cancer from what I understand. Would you believe I cancelled my surgery for a total vaginal hysterectomy with ovaries for March 8th today against the judgement and high recommendation from my gyno. That was not easy but I've been doing so much reading on the hystersister website that I got totally freaked out and now will attempt to find other options for the time being. So, I will be going to get a second opinion in the near future and take it from there. I hope to start megace or provera from what I've read they are used when surgery is not done to attempt to correct the hyperplasia I guess if is not too advanced, I did have one polyp removed during the hysteroscopy too. I hope we can continue to compare notes.. Take care and I'll let you know of my progress. Tjoyce Oh, You can call me Toni as that's my first name.
"Would you believe I cancelled my surgery for a total vaginal hysterectomy with ovaries for March 8th today against the judgement and high recommendation from my gyno. That was not easy but I've been doing so much reading on the hystersister website that I got totally freaked out and now will attempt to find other options for the time being."
Okay this is just my opinion; I think this is a wonderful site in many ways and very informative and helpful sometimes. However, this post here scares me because this site I believe wasn't intended to substitute for medical advice and we shouldn't read the negative stories of some women and assume we will have the same outcome. I am guilty of this as well. This site has freaked me out at times and at other times it has been comforting. My doctor has heard of this site and although I'm not listening to him he kindly asked me to stay off it and other internet sites and allow him to be the expert that he is. Now again this is only my humble opinion; if a doctor whom I trusted even a little told me my uterus was in ANY way pre-cancer or cancer I personally would have that thing taken out POST HASTE!! I would never want to mess around with the big C. I have seen people I love die of it and suffer with it. Please don't let any internet site scare you enough to take a risk with your life. But do get as many opinions as you need to feel comfortable. I have struggled with the decision to have my hyst. too. I hope and pray that I am like the many women I know in my "real life" and have a good outcome. In fact the only women I have found with negative results have been on the internet. My good thoughts are with you and I truly wish you much health and happiness
Thank you so much for your reply to my postings. You make a good point about having faith in one's doctor, and my doctor kept refutting the various negative things I would rant off that I read, like not removing the cervix because she does a vaginal and told me that with a vaginal hysterectomy the cervix must be removed as well, and new she said new studies have found that removal of the cervix does not cause the complications I am worried about, etc. I'm sure a doctor doesn't like to be second guessed, and you are correct that the big C will be a sad answer to my not listening to my doctor. Well, I have an appointment with a gyno/oncologist next week that was actually done through my own gyno's office for a second opinion next Wednesday so I plan to go with some of the posts from hystersisters when they were cured by taking meds and avoided a hysterectomy and ask if that could be tried on me too. I want you to know that I really appreciate your caring email. I'll post after my next doc's visit if you want to read how it goes. Oh, when did you have a hysterectomy and what was it done for and how were you post op? Thanks, Toni (Tjoyce)