I'm sorry to hear you had those side effects. I will count myself fortunate that so far I have some hot flashes but it hasn't been as bad as expected and otherwise I don't have any side effects. Also my tumor has shrunk!
there's not a lot i dont know about AA and i do know that it has metastasized in 3 people, its so rare that it was originally thought to be totally benign but that has changed recently and has killed all 3 ladies
its changed my life and not for the better, i lost my ovaries because of it, menopause nightmare, zoladex is also a nightmare, no sex drive and hot all the time, it grew back despite no ovaries, surgery was awful, no getting rid of it, had it 5 yrs now and i am not the person i once was
Hi All, My fiance' has AA and we are interested in hearing some success stories and names of doctors that have helped you with this disease.
She has been on Lupron for years which has been effective in keeping the tumor at bay but the side effects like the other medications mentioned are not pleasant.
Please share your stories and doctors you have worked with along with their contact information if you could.
I was wondering if you could share with me some more of what I hope is a success story for you. If you wouldn't the name of your doctor / surgeon and his or her contact information.
i read your story just now and wanted to say “ amen”,be ause yes angiomyxomas are benign”, but it really renders havock before it is found and the right diagnosis is made!
i had a partial fingertip removal, 5 hip operations and then eventually found the culprit..., nose cavity also removal of a angiomyxoma, and a leg AA.i totally agree the debilitatating repeating of these tumors takes over your life and also makes you having a whole change of life expectancy because you always worry when will it appear again and will it always be in a place where it can be removed?
IK wuld like to say a big thank you to aal the ladies in 2010 /11 when I needed support and help during my surgeries
I was quiet a journey
I am quiet well now with no reoccurance of AA , I have an MRi every year
Thank fully all clear
I have numerous other problems , joint pain back pain , pelvic problems, weight gain , its hard to know whats from the surgeries or from the hysterectomy /menopause
how ever i keep going managing pain the best I can
I agree with a previois comment I am definitely not the same woman in many ways
But at the time of my first surgery I vowed it didnt matter what they had to do to me once i got to live , and thankfull AA was benign
i have struggled at times in the last few years , with energy and pain but I got my wish I have enjoyd my family and I have seen my beautiful daughter grow into the most incredible young woman , that i am most thankfull for
I wish everyone on the forum good wishes and I pray for all AA suffers who are frustrated about the lack of infomation out there
i will keep an eye on the posts , if any one has any question Imglad to help
i am still about, have another 2 children now and 11 years still have regular check ups with the aa still present,
i have had a few bouts of zoladex to shrink the tumour but it still comes back and then my surgeon debulks it and then lets me get on with it so to speak
Its interesting to hear such different stories. I was diagnosed in 2014 and believe that most of the (gynaecological) tumour was removed. They thought that what was left was scar tissue.However I have other symptoms which are not being addressed and wonder if it is bigger than they thought. I was only scanned for one year and not put on any other treatment other than oestrogen pessaries.
The original sample went to a histopathologist in Dublin who wasnt sure it was AA but for myxoid stroma cells, this was the closest diagnosis he could give.
I have since had to go on gabapentin for leg pain. It hurts when I bend over and I have lumps under the skin in my buttocks. The leg pain was keeping me awake at night. I dont know if the tumour is near the bladder as I have emptying problems and was getting persistent utis and haematuria back in early 2000 which they couldn't diagnose a cause. I am now in perimenopause and all the usual symptoms with that. I am lucky that the operation wasn't as severe as some of you have had to go through. X
i hope you are ok, i have recently shared that i get a lot of coxyccx pain ( sorry for the spellling), i am due to have an mri to check all is ok in and around the pelvic area. Nice that people are still using this forum, and that we are here to support where needed, there is a facebook page also that a lot of people from america write on but i follow it to see the progress of treatment etc
