Diagnosed with aggressive angiomyxoma

Hi

I had a hysterectomy and removal of tubes, ovaries and cervix in September for fibroids, adenomyosis and removal of endometriosis. Following histology I had two nodules removed from my vagina that have been diagnosed as aggressive angiomyxoma. I’ve been trying to find out information about this rare condition and there isn’t much out there. I’m obviously concerned about the implications of this going forward as the tumour wasn’t removed with clear margins. 
I’m still really struggling with fatigue and pain and tingling in my leg and I’m wondering if this is likely just post operative recovery or if the fatigue is to be expected with this condition.

I would appreciate any advice you can give. Thank you 

  • Hello and thanks for posting

    I'm sorry to read about your current situation and appreciate that this must be a very difficult time for you.

    Angiomyxomas are a rare type of soft tissue tumour (lump). They are not thought of as cancer because they usually grow quite slowly and they don't usually spread to other parts of the body. Aggressive angiomyxoma. tends to grow deeper into the tissue. They can come back locally but they are very unlikely to spread to other parts of the body. We have information about angiomyxomas on our website.

    Your fatigue, pain, and leg tingling could be part of a normal post surgery recovery especially after after a major pelvic operation. Nerve irritation and general tiredness are common and usually improves over a few months. If these symptoms worsen or don't improve over the next few weeks then do get in touch with your healthcare team.

    I hope this is of some use. Give us a ring if you would like to talk anything over. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Kind regards,

    Celene