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! 

I too was fobbed off for over 2 and a half years, I am reaching the 4 year marker now. I am booked in for my hysterectomy next week, really nervous because I’m only 28! But I can’t keep living in fear and I already have 2 children that I need to be here for. For me I’m too scared to risk it, it’s not worth the risk of possibly wanting more children in the future. It’s difficult, some people stick with the 3 monthly check ups but I want to be able to live my life again without the pain or constant bleeding! X 

I think you are making the right decision. I’m 44 so had two children and it’s hysterectomy for me as they prefer not to consider monitoring as it’s too high risk. My second daughter was a Pgd/ivf baby because my first has cystic fibrosis and we were advised that you shouldn’t have two children with same condition as they can make one another unwell so we went for the Pgd route and were blessed first round on this with our second child. Whilst going through Pgd my mother in law had cancer and didn’t survive so I’m petrified now that she would have been here if she wasn’t fobbed off. I’m 5 years with this issue on 20th March which is so worrying. 
for both of us the quality of life without constant periods and pain will be a blessing for us. Recovery period I’m dreading. Anytime you fancy a chat let me know.

How long did you wait from tests until your operation date? 

Hi my youngest is 5 so I am also over the 4 year marker. After a pretty intense day with scans etc the doctor said he hasn’t reviewed my scans as he needs to sit down and discuss with the radiologist. I was offered a hysterectomy straight away, which was a relief! Especially as I am still bleeding every now and again with the coil. My appointment has come through for April 19th to see the gynaecologist oncologist he only has a clinic every Friday. I also received a call a week after to say at present no signs of the dreaded cancer. Fingers crossed it will be the same for you too !

That’s good to know. I hope you are ok. 
I was seen on 22nd Feb locally to say I’ve been referred to london. I’ve had pelvic scan and MRI already. Arranged my own MRI locally because londons machine is broke so thankfully I have a MacMillan nurse assigned to me locally despite now being under london. So nurse had local cancer gynaecologist to ring and arrange MRI. This has been abit of. Nightmare tbh. Anyway London Friday for bloods and thorax scan to see if there is any spread. Next steps I’m hoping will be hysterectomy and no chemo if it hasn’t spread. So worrying whatever your situation. 
I still have constant cramps, very painful breast,  bloafing and acne so cannot wait to just have op recover and feel me again. Not been right since the Pgd/ivf in all honestly. Crazy to think a small nodule can cause so many issues. I have been told that all scans will be reviewed on Friday so I don’t have to travel back to london so hopefully this is the case and I don’t have to wait for a telephone call week after 

Yeah it was a pretty daunting couple of months thinking the worse but I’ve now got a plan in place so I feel a lot better ! Sounds like you have been going back and forth with this ! Have you heard anything from your locally arranged scans ? You’ll meet the London based nurse and she is lovely yeah I constantly have pregnancy like symptoms too! It’s crazy to think that something so small can cause all of this ! They told me the same too, but I ended up being in the mri scan for much longer so they followed up with a phone call ! Hope Friday comes quick for you ! X

Sounds like we have same thing and symptoms. I’m on a support group on Facebook but not come across anyone with same issue. I’ve spoken to the london nurse and have been liaising via email as I arranged my own MRI locally due to machinery not being in operation in London and that would have delayed things by weeks most probably. My local scan results will be send to london and discussed on Friday with me. Small chance of this nodule being benign but I’m not hopeful given it’s been 5 years. Friday cannot come quick enough! Glad of this forum as come across you and one other with the same issue. Dreading the recovery after operation but putting things in place now ready, started meal cooking and freezing, invested in a tall 6 drawer freezer in additional the one I have to take the pressure off my husband, I cook from scratch daily so this was stressing me. I’m off work at the moment until I have appt Friday, can’t focus on anything right now but luckily I am only part time as I’m a carer for my eldest daughter too. 

I’m with the Sheffield trophoblastic team, I was first seen just before Christmas and my operation date is March 15th, so it’s come really quick! I think as soon as you know that’s the route you want to go, they book you straight in x

I see you guys have had an MRI, I’ve only had X-rays so far and my hysterectomy is next week? I wonder why I haven’t had one! I am also absolutely dreading the recovery. Other half isn’t great when it comes to sorting the kids out, so pack lunches and school uniforms is going to be hard to stop myself from doing them! 
i am also in the Facebook group :) 

Yeah I have been grateful to come across real life stories rather than the research papers online! I honestly thought the worst with being 5 years since my last pregnancy and having access to my biopsy reports as I got it done at the private hospital I worked at and googled all of my markers and it just didn’t look good ! But the doctor spoke me through everything with me and answered all my questions so I honestly left feeling much better! You sound like you are very prepared ! I have a huge family holiday coming up so I’m hoping for it all to take place after that so in the mean while I just send of my blood and urine tests for them to monitor ! But come 19th April I should hopefully have a date in place and prep can start then ! Sending you positive vibes ! 

Yeah I have been grateful to come across real life stories rather than the research papers online! I honestly thought the worst with being 5 years since my last pregnancy and having access to my biopsy reports as I got it done at the private hospital I worked at and googled all of my markers and it just didn’t look good ! But the doctor spoke me through everything with me and answered all my questions so I honestly left feeling much better! You sound like you are very prepared ! I have a huge family holiday coming up so I’m hoping for it all to take place after that so in the mean while I just send of my blood and urine tests for them to monitor ! But come 19th April I should hopefully have a date in place and prep can start then ! Sending you positive vibes ! 

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.