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! 

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. 

The only knowledge I have is that it’s slow growing hence those who want another child do have the option with close monitoring. 
I don’t know if I was different to others however, I seemed to be seen within 3 weeks of diagnosis and would have been on the nhs list for hysteractomy within 3-6 months. I went private because mentally couldn’t wait months as our family has been through such alot of drastic life changes with cancer amongst other things. I appreciate not everyone is in a position to go privately and I’m so thankful I was because even waiting 3-4 weeks until the operation felt like years. When is your next appointment? 

Yes I do wonder how many women have atypical placental site nodule and never know about it! And how many of us have done ivf and is there a link! I had absolutely no symptoms what so ever, no pain , no bleeding, no raised hcg or anything. It would never have been found if the doctor hadn't suggested a hysteroscopy due to 3 failed embryo transfers with excellent quality embryos.  I've had no meeting with doctors or any info sent to me about it just a brief letter in the post stating I'm now being monitored under the trophoblastic disease concern. They want me to do a hcg blood test this week at my GP and MRI in September. I still havent been approved for the Facebook group, would  you mind approving my request please or must it be done by the admin? You must be so glad to be out the end of all of this yourself! I've decided I'm not going to let this consume me with worry.. I've spent 6 years trying to get my son and now hes finally here.. I really just want to enjoy my life & my little newborn

The admin on the group is living in Australia so could be time difference. The group was on 16 members when I joined in March and now is on 23 members so it’s grown quite quickly since March. 
I wonder if you had this nodule before your son. They cannot be too concerned at this point if you are being monitored with bloods so try and relax and enjoy your newborn. My nodule was 5 years old before I had hysteractomy and happened after last pregnancy March 2019. My body asides from the hysteractomy recovery and nursing a kidney infection feels like it did before my first pregnancy. The weight isn’t coming off very quick at all but I instantly dropped 7lbs. I’m eating well but not moving much but I hope by summer to lose one stone and be back to pre ‘all these problems’ weight. I’m not fatigued like I was, I’m just post op fatigued now, mentally I’m back to how I was as no more bleeding or periods which I’m over the moon about. 
You are the third person now with ivf so I do wonder if there is a link x

That's fantastic! You must be so thrilled to be feeling great & well again. I spoke to the nurse earlier. she said the plan is hcg blood tests every 3 months and MRI scans twice per year for 5 years.. After 5 years then it's hcg bloods twice per year and MRI scan once per year. After 10 years monitoring you are completely discharged!!! Delighted about that because at least theres a positive end in sight with it, and it's not constant  monitoring FOREVER for the rest of your life! She said they're currently over diagnosing it which is adding alot of unnecessary psychological stress to patients. They're hoping new data will help to decrease the lenght of time monitoring. In your case it was warranted as you had severe symptoms. Thankfully u had that black period which resulted in your hysterectomy. Great that u had it done so fast! Yes I had this Nodule before my son, with absolutely no symptoms! They found it coincidentally! Had a few failed embryo transfers so they did a hysteroscopy to have a look inside.. and it's then that they found remains from my previous miscarriage still inside and the Nodule! Everything was removed but nodule came back as APSN. got pregnant easily once it was removed and forgot about the whole thing while pregnant. Be interesting to know if they ever find out if ivf meds caused it. Wouldnt be surprised. Anyway I'm Just praying this will never progress and I can just get on with enjoying my life and my little son. Wishing u the best with your recovery! And thanks so much for the chats, it has really helped to have someone to talk to! Xx

This discussion never took place for me because my APSN was very borderline so I’m assuming it was turning or had turned. No spread in uterus or tubes as per my pathology. From what you’ve been informed seems like if it hasn’t turned over the course of ten years then it will never turn so this sounds very positive for you and others going forward. 
Just drop a message here anytime or once you’ve joined the Facebook group a few of us are on there to help with queries or concerns as best we can. It will be interesting to know if this is linked to IVF and maybe we will find out in the future.  

Thank you so much ️

I was just reading back on this whole thread. Someone mentioned that they had retained placenta. I too had this issue! Just wanted to document it here for anyone else reading this thread. Maybe it was the retained placenta that caused this and not ivf meds? I had a 2nd trimester loss due to trisomy 21. After the miscarriage my placenta was retained so they had to remove it manually in theatre. They didn't get it all out!  I learned this as i had 3 failed embryo transfers which led to a hysteroscopy for investigation. Fragments of the retained placenta were then found. They said these fragments were preventing a successful implantation. They removed the fragments but also sent me for a D&C just to make sure they got it all out. It was then that the Nodule was found. It was found very coincidentally.  The Nodule was then sent for testing and came back as ASPN. Just said I would document this info here this seen as this is so rare.

My placenta ruptured together with too much blood loss and uterus split. I asked this very question, could it be placenta was retained and I was told no because left over placenta tissue would normal just die off but you now saying about part of the placenta being retained makes more sense given mine ruptured. The consultant team didn’t have many answers as it’s so rare. Be interesting to know how many people in UK have had this very issue and whether it is linked to IVF or ruptured placenta or just one of those rare things. 

My placenta ruptured together with too much blood loss and uterus split. I asked this very question, could it be placenta was retained and I was told no because left over placenta tissue would normal just die off but you now saying about part of the placenta being retained makes more sense given mine ruptured. The consultant team didn’t have many answers as it’s so rare. Be interesting to know how many people in UK have had this very issue and whether it is linked to IVF or ruptured placenta or just one of those rare things. 

My placental tissue remained inside with absolutely no symptoms whatsoever (bar not being able to get pregnant again!) Once they removed everything i got pregnant straightaway. Yes because yours ruptured you would definately wonder could fragments of placenta have been left behind! Very possible. I would logically wonder the same.. I'm surprised they're not trying to "study us" more and investigate the common links between all of our stories are seen as this is so rare 

I had my placenta “surgically removed in theatre” after it was stuck and I haemorrhaged very badly (3litres!) and yet somehow 4 years down the line with the most horrific periods and pain, I was found to have an ASPN, I’m now 28 with a full hysterectomy (bar ovaries luckily!) I was also surprised that they didn’t want to study more into it and was shocked that as soon as I had my hysterectomy I was discharged and never contacted again! From being contacted once a week to nothing is very strange. It’s all very surreal as it happened so fast! From diagnosis to hysterectomy was around 10 weeks. I’m now 10 weeks post op :) 

When I asked if there are any links with IVF they said they’ve never looked into it but perhaps they should going forward. I feel we can’t be the minority and have so little woman with this. I do think a lot is passed off as menopause symptoms or just the way your body is and alot just carry on without investigation. Those who don’t get symptoms - how many woman are actually out there with APSN. 

I also had horrendous periods 24/7 and heavy. Pill and depo masked it but nurse encouraged I be on them to control the bleeding. So despite my traumatic birth I feel I was fobbed off. I have copies of my GP notes and I am going to write a letter when I’m ready to do because i feel now that nurse should have referred me to the GP. Hysteractomy would have been treatment for me but it would have saved years of pain.