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! 

No the diagnosis was the APSN which was found from the biopsy’s in November I found about it in February and that’s all I know upto now was that it was APSN and they hadn’t had a case of it in out hospital in over 20 years and wasn’t sure about what route to take so sent it for a review 

This is the same as me. I’m in South Wales. Had bisopy in November and it came back last month borderline APSN so was send off to the specialist hospital in London. My scans etc have been arranged very quickly and I see the Professor on Monday who specialises in these. I had a call directly from the nurse at the specialist centre in london. So had my gynocologist appointment on 29th Feb, the bisopy taken locally in November was send to london on 14th February. London rang me 28th February to explain the next steps and I have an appointment on 18th March. Locally sent me for pelvic CT scan and I arranged my own MRI locally because londons machine are broken at present so I contacted my local MacMillan nurse who was amazing and she contacted the local cancer consultant who then arranged for MRI and they have now sent the images to London ready for Monday. I do have to have a thorax scan and bloods in London.
Once London contact you I’d imagine you would go down same route as the rest of us. Mine is borderline so not sure if that makes a difference of urgency level though but from conversations depending if you’ve had children then treatment recommends is usually hysterectomy however if you want children or more children there are alternatives depending on the severity of the nodule but I’m no expert so it’s best to see what is best for you when you’ve spoken with the specialist. 

Your hospital will send it too the specialist centres for confirmation of aspn. Once they have they will be in touch to book you in for appointments. If you join the group mentioned before I can give you the direct contact number to call the specialist centre so you can get further clarification 

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! 

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. 

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.