I’ve been diagnosed with atypical polypoid adenomyom. I was recommended for a total hysterectomy including removal of the ovaries. Has anyone out there been diagnosed with atypical polypoid adenomyom? I would value the input of anyone else with experience with this.
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Hello, I am 45 years old with same diagnose, fragments of endometrial tissue with features of atypical polypoid adenomyoma. I’ve seen two doctor and they both to suggest a hysterectomy they said that only treatment is total removal. .
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I was recently diagnosed within 2 weeks - i was advised hysterectomy, leaving ovaries was an option..... what have you ladies done since your diagnosis?
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when i was diagnosed the doctor recommended a hysterectomy, but now the doctor says there's only a small chance of getting cancer so there's no need for a hysterectomy unless i get cancer. So i go to the doctor twice a year for a biopsy.
I would be interested to know what symtoms you have and how you deal with them. In my case I have put on 20lbs of weight which I can't lose and my hair has become very dry.
I would be interested to know what symtoms you have and how you deal with them. In my case I have put on 20lbs of weight which I can't lose and my hair has become very dry.
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I'm 60 yrs. old and was diagnosed today with atypical polypoid adenomyoma with a reccommended hysterectomy. I was told that if I was still of child bearing age they would do D & Cs on a regular basis instead. I have been told this diagnosis is very rare and my personal OB/GYN had never heard of it. I have also gained 20 pounds in the last year and have lost half my hair. Has anyone been told this could be due to the condition? I do not want a hysterectomy unless it is truly necessary.
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I was diagnosed with atypical polypoid adenomyoma when I was 46 yrs. old...Unfortunately before I was given the correct diagnosis, I was incorrectly diagnosed with cervical and uterine cancer.....I received the incorrect diagnosis from a small local hospital, but thanks to my family doctor who suggested I get another opinion, he made arrangements to have me seen by a gynecological oncologist, and that is where the correct diagnosis was made..Thankfully I did not have cancer, but I did have to have a complete total hysterectomy. I have never felt better in my life, than I did after the hysterectomy. Sure the healing process was no fun, because I had to be cut, and they did biopsies of the organs they could, while they had me open, but after the healing process, as I said, I never felt better....I suffered for many many years with terrible cramping, moodiness, tiredness, backache, I know I was no fun to be around, 3 out of 4 weeks I felt like this....but there is light at the end of the tunnel, and like I said once I had the hysterectomy, I have never felt better...I tuly believe I had had this conditon for years, and it was never diagnosed until I was 46 yrs old....
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I have received this diagnosis last month and I had a second opinion today. I am only 36 years old. They said if I am not going to try to get pregnant right away, a hysterectomy (leaving the overies) is the best option. If I wanted to get pregnant, then I would need to try right away and would have to have regular transvaginal scans and hysteroscopies to be sure I did not develop cancer. The doctor also doubted that I would have the furtility to get pregant without help and there would be increased risk if I waited.
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Since the condition of atypical polypoid adenomyoma is very rare in someone my age (60), and it can be misdiagnosed as benign instead of a closely related cancer, I decided to have the recommended hysterectomy and also my ovaries removed. My doctor who is the head of OB/GYN Oncology, told me that even waiting and monitoring can be very dangerous. My biggest concern was would I still feel like a woman and would sex be the same. (Yes, seniors still enjoy sex.) My surgery was nine months ago and even though I had some post-op complications with infection, I do not regret my decision. I would rather be safe than sorry and sex is as good as it ever was. My husband was very afraid of the surgery, but I was more afraid of not having it. I hope this helps someone.
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I received my diagnosis a week ago. I am only 34 years old. I am full of questions and concerns of what will life be after my hysterectomy. I have not had the surgery yet but does anyone know why this type of cancer is rare? I was glad to read some positive post surgery feedback from most of the women who posted on this blog. Thank you for sharing your stories.
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I was diagnosed three years ago when I was 43. My gynecologist worked with a pathologist very closely for two weeks to diagnose and learn more about what I now know (as you all do) is a rare condition. I had a hysterectomy, but was able to keep my ovaries. While I wanted to keep them, I was ready to give them up if things didn't look right. However, all was fine.
Once I wrapped my head around the hysterectomy (which didn't take long once I knew what we were dealing with), things were fine. My surgery and recovery was straightforward and everything's been fine since. While I wish I wouldn't have had to deal with it, I've been really pleased and relieved with how everything turned out.
Good luck!
Once I wrapped my head around the hysterectomy (which didn't take long once I knew what we were dealing with), things were fine. My surgery and recovery was straightforward and everything's been fine since. While I wish I wouldn't have had to deal with it, I've been really pleased and relieved with how everything turned out.
Good luck!
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Thanks to the last person that posted! I am the 34 year old full of questions. I had my surgery on August of this year. The surgery itself was fine. They did a full hysterectomy( ovaries, tubes, uterus and some lymph nodes). I feel okay. The recovery has been hard. I developed a rash around the incisions. Something unexpected of course, but once I get over it all should be okay. I will not be needing chemo or radiation, which is good news. My doctor said that I should not have to worry about anything. But I guess I hear so much talk about cancer showing up somewhere else.
I hope this information helps any one who has learned of this condition affecting them currently. Also, if any one has comments or can share how their sex life has or has not been affected after going thru this, that would be good to hear. I have my doubts that it will go back to "normal".
thanks.
I hope this information helps any one who has learned of this condition affecting them currently. Also, if any one has comments or can share how their sex life has or has not been affected after going thru this, that would be good to hear. I have my doubts that it will go back to "normal".
thanks.
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i was 32 years old when i received the same prognosis. I've had GNRH treatments as a conservative measure to get rid of it but it seemed to have recurred. Now i'm 33, still single, and was recommended to do another biopsy in 2 weeks. Im quite afraid of the possibility of getting a hysterectomy done - the difficult recovery, not having the same sex drive, and other side effects. Would it still be possible for me to bear kids even with this condition and not have any complications passed on to the child like abnormalities? Is it even recommended that i try having kids, or would carrying to term prove to be unsuccessful? Not sure what to do.....try doing conservative treatments, and keep myself open for child bearing? or going for the radical method like a hysterectomy?
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HI, im 38 years old and just got diagonosed 3 weeks ago also with the same thing..The docter wants to do a hysterctomy, also said my chances of this turning to cancer is 50%...i have heard that progesterone therapy works for this, has anyone tried this???
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I was diagnosed with this condition 5 years ago when I was 45. I elected to have a radical hysterectomy after consultation with 2 specialists. The surgery was carried out by laparoscopic surgery and I have been left with 2 very small scars - barely noticeable.
Five years on I can honestly say I have never felt better and it was the best decision for me. After the surgery, I was in hospital for 4 days and back to work in 10 weeks !! Every 6 months I have an implant of a drug called Oestradiol and Testosterone (HRT) and my sex life has improved - my sexuality seems to have been heightened !
The one side effect I would say I have noticed is I now have 'a stomach' . Whilst I would say I was never slim, I always had a flat stomach - but not any more. A small price to pay I think
Five years on I can honestly say I have never felt better and it was the best decision for me. After the surgery, I was in hospital for 4 days and back to work in 10 weeks !! Every 6 months I have an implant of a drug called Oestradiol and Testosterone (HRT) and my sex life has improved - my sexuality seems to have been heightened !
The one side effect I would say I have noticed is I now have 'a stomach' . Whilst I would say I was never slim, I always had a flat stomach - but not any more. A small price to pay I think
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I was diagnosed in 2002 and was told I needed a complete hysterectomy as well. I was 48. I had had no symptoms except that I was spotting in between periods. The APA was discovered when I had the d&c to remove polyps that had formed. After MUCH research and consultations with several doctors, I finally found a doctor that would monitor my condition. I did not wish to have unnecessary surgery and could not understand why a hysterectomy was necessary for a condition every doctor assured me was not cancerous or even precancerous and all agreed that the chances of it turning cancerous were extremely small. The surgery would be to make sure nothing would develop in the future.
So, I have not had the surgery. Since the diagnosis I have had yearly ultrasounds and another d&c and all is still well. I can't tell anyone else what to do, but I have seen the head of gynecologic oncology at Vanderbilt in Nashville and continue my treatment through this facility (but with a different doctor). I was told by the head of the department that most women would get tired of the follow-up care that would be needed. I am still healthy and having absolutely no symptoms. It is aggravating to have to go to the doctor for the follow-ups, but so far I think it is the right decision for me.
So, I have not had the surgery. Since the diagnosis I have had yearly ultrasounds and another d&c and all is still well. I can't tell anyone else what to do, but I have seen the head of gynecologic oncology at Vanderbilt in Nashville and continue my treatment through this facility (but with a different doctor). I was told by the head of the department that most women would get tired of the follow-up care that would be needed. I am still healthy and having absolutely no symptoms. It is aggravating to have to go to the doctor for the follow-ups, but so far I think it is the right decision for me.
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