How did you find out you had it? I have seen a lot of posts about what they are doing about it etc, but not about how it was diagnosed? I also haven't read about anyone having my major symptom which is the mass prolapsing. I have to go back next month for an MRI and follow up, I feel like I am not prepared to discuss my long term right now. I saw your reply before this one and that radical surgery has been mentioned, but you also mentioned having surgery already. Are they removing small amounts of the mass to keep it from growing too large? My doctor wasn't going to do anything and it scares me that I hear it could keep growing and cause really bad problems. It's bad enough now that it prolapses and sometimes I can't urinate if I hold it too long.
I totally know what you mean about not wanting that surgery, my oldest son in 3 next month and I can't imagine living life after the surgery they explained.
i discovered mine when i noticed a 'fullness' in my buttock which i noticed between my legs, then something came down my vagina which i assumed was my rectocele (my consultant agreed) i had surgery for the rectocele but the fullness remained and was thought to be a bartholims cyst so was also operated on but found to be this tumour but originally said to be a different one.
Hi Kelly I have had aggressive angiomyxoma for 14 years it is now back for the fourth time!Over the last 14years i have learned to cope with the condition, it isnt easy i have great support from family and friends.I now go to the royal marsden for any future operations and have a great surgeon there.i got AA when i was 32 i was very scared and didnt know what to expect but 14 years on i have learned to cope with AA
Hi Ladies, I was diagnosed about 2 years ago, My GYN had me sitting in hot water for about 6 months claiming that it was just a cyst brought on by the stress of childbirth and said because its not painful I should not worry about it. Luckily I had to good sense to seek a second opinion and was sent immediately to see a GYN Oncologist. He too thought it was a cyst located in my vulva area and like my gyn did in the past he attempted to drain it by making an incision. It was excruciating as this was done in his office. After he realized it was more than it seemed he had to get what he could out in his office. He sent a sample to the lab and a week later called me with the most terrifying news not only was it AA but in my case it is Malignant AA. I took tamoxifen for a year and my doc said it was all gone but here I am 9mths after getting off the tamoxifen faced with its return. Scans showed that it is also extends to my ovaries.But my doctor seems reluctant to send me to get regular scans he just checks my vulva and said it was fine, that was 3 mths ago now I am having the same symptom as when it first started.i could start taking the Tamoxifen again but one of the side effects is cervical or uterine cancer which in my opinion is more dangerous. I have 2 young kids and already had my tubes tied. I am considering removing my ovaries or getting a hysterectomy. I will see my Doctor in a few weeks and was wondering if anyone had any advice on this, or the changes a hysterectomy will have on my body? anyone please feel free to give me some advice.
I'm sorry to hear about the horrible care you have received so far! I don't have any personal experience as I was only diagnosed a year ago, but I did read a lot about pelvic surgery when they thought I had a rectocele. There was a very interesting site for prolapse information and there were a lot of women who have had a hysterectomy and talk about side effects. The main thing that stuck to me was that everything is a place keeper, so you remove something as large as your uterus and there is bound to be movement due to gravity. I know my MIL has one in her 20's and has had to have repeat surgeries to do repairs, though her's was 35+ years ago, but her long term effects are not nice.
I hope someone has more personal experience for you.
Hi, I don't know if you are still posting but I found your comments of interest to me. I was diagnosed with angiomyxoma 27 years ago and have had major operations and minor ops to try and get rid of this tumour. It is in the connective tissue of my pelvis and because it causes prolapses and a vaginal hernias I have had loads of pain over the years sitting and standing. I was pain free for two years until recently and just as I was diagnosed with breast cancer and am currently having chemo the tumour has decided to rear its ugly head again and I suspect I have another prolapse/hernia... I am due to see the consultant next week the day before my next chemo. Life is definately not a bed of roses but I am a very strong person and have dealt with the operations over the years. I have avoided radical surgery, colostomy, urostomy and hysterectomy but have suffered a lot of pain which in my opinion was the best alternative.
These tumours are really problematic and cause more probs in many cases than cancerous tumours. They are especially difficult to deal with when they are in the connective tissue.
I can totally appreciate how isolating this condition is and the lack of information about it. In the meantime we have to solder on, get the next MRIs out the way and try and deal with it until the next apt but it is not easy!!
Many of us post more frequently on the Rarer Cancers.org message board, but I have e-mail notifications so I don't miss a message.
Wow 27 years, I think that's the longest I've heard about so far. I'm so sorry to hear you have been suffering so long.
Have your doctors considered any other treatment options? Do you know if your tumour is hormone responsive?
I am feeling a lot better about my situation right now, at the end of the month I am starting hormone treatments in hopes of shrinking my tumour. It's not a guarantee but it's a step in the right direction...I hope!
Hi I really hope it does the trick for you. I was put on Tamoxifen several years ago but it didn't do anything. Ironically I will be on it again shortly as I am having chemo, rads and Tamoxifen for breast cancer. Sadly benign tumours don't respond to cancer treatment. I am in quite a lot of pain now as the tumour seems to be sitting between my front and back passage (sorry to be so graphic) I think I may have a prolapse which has caused the tumour to give discomfort in this area. So its more trips to the consultant and another MRI. When I first had MRIs for this condition there were only two operating in the whole of the country and I had to travel from Stourbridge up to Nottingham.
I always hoped over the years that a cure could be found for this condition other than radical surgery. I still live in hope but its been 27 years now!
Best of luck with your treatment and please let me know if you have any success with it.
It is so refreshing to be able to speak to someone who has the same condition as we are an extremely rare bunch!!
Kelly I am new to this site and if you still post would like to tell you that I was diagnosed with angiomyxoma when I was 23 (one of the first in the country) I am now 51 and have had this condition 27 years and have avoided radical surgery. It hasn't been easy and I have experienced operations and pain over the years but I have dealt with it and learnt to live with it. Please feel free to message me if you need to ask anything.
