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! 

Yes I’ve had four children and was sterilised at the same time as the hysteroscopy so definitely don’t want anymore 

I don’t have Facebook I will ask my sister to join for me to help get more information thank you very much 

Hi is anyone still active on this thread? Just had a little boy after 6 years of fertility struggles,  miscarriages, ivf etc so it's a really happy time for me right now.  Last year I had a hysteroscopy due to 3 failed embryo transfers and they found APSN. I had no symptoms at all. I put all of this to the back of my head as I got pregnant after they removed the Nodule. But I Got a phone call yesterday saying I need to commence monitoring now. Hcg blood tests every 3 months and MRI Scans twice a year. They've given me no end in site and say the monitoring is forever. Now that I've had my little boy after years of hell I just wanted to close this chapter and live happily ever after. Has anyone else just decided not to give this much energy and get on with their lives and not do the monitoring? I know it's for my own good & my health but the thoughts of this being such an ongoing ordeal is really getting me down. I just want to be happy now and enjoy my life with my newborn son after so many years of misery. 

I have recently had hysteractomy because I’ve had two children and am 44. You can be monitored but I was not really pushed for that. I was informed the best choice for me was hysteractomy because mine was atypical and very borderline. I was told after the operation I was all clear but this time in a few months or even a year it could have been a much grimmer outcome. Join the Facebook group there’s a few of us on there and some in same situation with you. My symptoms heavy clotted periods, weight gain, moods, headaches, low iron, pain, sore boobs, acne - to name but a few. Mine was discovered from biopsy in November when I had coil fitted as was told it was just my age! Big hugs x

Thanks for your rely! Hope you are doing ok after the hysterectomy. If I had a hysterectomy would that mean it's over and done with then? as in no more ongoing monitoring for life or risk of it spreading? They haven't mentioned having one to me But if it meant this ordeal would be over then I would consider it as I'm not sure if I want a 2nd child after everything I've been through. I sent a request to join the Facebook group so I hopefully I will be accepted soon! Would be great to have some support. Trying to remain positive now as I just had a baby so it's a really happy time & I don't want this to spoil such a special time 

If you want another child you can be monitored. There is a woman on the Facebook group who has another child and hysteractomy 7 months after birth. The monitoring is to see if the APSN starts turning into cancer, you can have them Years and they stay as they are or they can turn. It’s so rare there’s not alot of information out there. So hysteractomy there’s no more monitoring unless they find cancer. No more periods. No more smears. I did not have cancer elsewhere so no monitoring going forward. I kept ovaries so still have full menopause to look forward to lol. 

I'm not 100% sure on not having another child. Right now I'm feeling it's a no. In saying that I'm still a bit shook so maybe down the line I'll feel differently, who knows! (I'm 42 now with 2 frozen embryos left) Has this thing not been around for very long then?? I wonder what's the longest lenght of time someone has been monitored.. I can't imagine going through 10 years or more of monitoring! What a pain. I'm in Ireland and the doctor said there are only 9 of us in the whole country! 

It’s a very grey area so I couldn’t say how long however, APSN are slow growing if that’s any consolation. My second child was PGD because my first has cystic fibrosis. I wanted another but was told no more after uterus split, placenta rupture and a few other complications on my second and we were very fortunate that Pgd which is ivf but they test for the cystic fibrosis gene before implanting the embryo - this worked first time and chances of a second round working was probably slim as I only had 4 embryos, 1 non carrier of the CF gene and 3 were carriers, the other embryos had CF. There are 23 on Facebook group, 2 are local to me and I believe there are 4 US and 1 Australia. There are very limited clinics in the country. I  south wales and had to go to london. For me monitoring was not an option, they did mention it but as I was told I couldn’t have more children after my uterus split I processed all that 5 years ago and my embryos were used for CF research - hard to swallow at the time but am ok with it now. Hands are pretty full with eldest having cystic fibrosis so two is enough. It is a complete shock to begin with. If there is an option for you to have a second I think it maybe safe to do so if you did it soon but only the consultant can advise you on this as I’m going by what I’ve researched on. 

That's alot to go through! Yes they said It was safe to have more kids.. It's hard to find much info online about APSN! It says online type 1 uterine cancer is slow growing and type 2 uterine cancers spreads quicker. Is APSN slow growing but if the cells mutate and grow does it become the type 2 the fast growing cancer? They haven't given me any detailed info even though the Nodule was found a year ago. I didn't ask either as I was totally focused on getting pregnant and then giving birth. It's 12 weeks since the birth of my son so it's only now that I'm giving this any headspace! 

I’d ask the consultant about length of time. Blood and urine monitoring will test for tumour markers every 3 months and if that changes then I think it’s time to operate. My consultant did not seem to have much information overall, only what they know to date. I asked if there was a link between this and ivf but they’ve never looked into it. I do wonder how many woman have these nodules and have never known! A lot of my symptoms point to menopause so it’s a grey area but having said that I never seen a Doctor over this until I was fast tracked in October under suspected cancer. The nurse kept pushing contraception on me to control the heavy bleeding - not the answer really! I had to push back in august when I seen an associate for further testing then thank goodness I had a heavy black period and Doctor sent me to gyno urgently. 

I’d ask the consultant about length of time. Blood and urine monitoring will test for tumour markers every 3 months and if that changes then I think it’s time to operate. My consultant did not seem to have much information overall, only what they know to date. I asked if there was a link between this and ivf but they’ve never looked into it. I do wonder how many woman have these nodules and have never known! A lot of my symptoms point to menopause so it’s a grey area but having said that I never seen a Doctor over this until I was fast tracked in October under suspected cancer. The nurse kept pushing contraception on me to control the heavy bleeding - not the answer really! I had to push back in august when I seen an associate for further testing then thank goodness I had a heavy black period and Doctor sent me to gyno urgently.