Hi ladies, not sure if this thread is still active but it’s been lovely reading all of this knowing I’m not alone! 
I have recently been diagnosed APSN, I’m only 28 and absolutely heartbroken with the thought of needing a hysterectomy. They have said I can be monitored for the next 10 years or have a hysterectomy and I’m really torn. But I’m not sure I could live with this anxiety for the next 10 years! My daughter is 3 and a half, I had a manual removal of placenta in theatres after her birth so I believe that may have caused this issue. And I’m worried that it’s been in there for almost 4 years already! My symptoms are like a constant “dull/toothache” kind of pain and I’ve had non stop heavy bleeding since my daughter was born, as well as painful/bleeding after intercourse. My GP kept fobbing me off until I was finally seen in June (3 years after symptoms started) and that’s when they found this abnormal area after a laparoscopy had hysteroscopy and it’s taken until now, almost 7 months since the procedure to give me the diagnosis of APSN (there was a delay from my local hospital sending it to the trophoblastic disease centre) 

Those of you that had a hysterectomy young, how was that? How are you doing now? I’m so worried about future health issues from having a hysterectomy young. 

I have just received the news that I also have aspn too. I’m awaiting my referral letter for my first appointment at charring cross. The thought of being monitored for 10 years is crippling to my anxiety. When all my issues started I begged my doctor for a hysterectomy which was refused due to my age (32). I have my two miracle boys, one of which has ASD so I have my hands full and do not wish to have any more children. Do charring cross give you an option for a hysterectomy? I just want my nightmare to be over. So glad I found this forum to know it has been one of the most settling pieces I have found because as we all know it is extremely rare and there doesn’t seem to be much out there! 

Atypical placental site nodule, there’s only around 10 members in it, I think it’s the only group on there x 

Oh I’m on that one ! I posted on the 16th feb ! If you ladies are comfortable we can do a little messenger group ️

Yes let’s do WhatsApp group that would be really helpful. Can we put numbers in here or not? Or I can find you on Facebook? 

It’s crazy there’s so few of us. Mine had grown from leftover placenta because it ruptured in labour. 

Or messenger group 

Hysterectomy sisters UK

This isn’t group I am on but will look on there now 

I posted on the 16th of February is the aspn group find me there and pop me a message 

Great thanks. Once I’m approved will find you both x

Sounds like you have your plan too. It’s been hysterectomy for me since my appt locally on 22nd Feb, I was assigned a MacMillan nurse then and that was before the hospital in London contacted me and I’m now under london not locally in south wales. It’s moved so very quickly for further tests for me so that’s why I am very worried but we will all get there. I hope you have a lovely family holiday in the meantime. 

Sounds like you have your plan too. It’s been hysterectomy for me since my appt locally on 22nd Feb, I was assigned a MacMillan nurse then and that was before the hospital in London contacted me and I’m now under london not locally in south wales. It’s moved so very quickly for further tests for me so that’s why I am very worried but we will all get there. I hope you have a lovely family holiday in the meantime.