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! 

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. 

Mine is from left over placenta too, I had a manual removal of placenta in theatre after my youngest (almost 4) and clearly they didn’t get it all! 
I posted in the aspn group 7th feb, happy to join the chat :) 

I almost feel a small relief to find some with the same issue. I’ve asked to join that group so once approved we can set up a group messenger chat as suggested. We cannot give names on here as they will be removed. 

I had a hysteroscopy and was sterilised back in November 2023 I got my results feb 14th Cole back as apsn my consultants haven’t had a case of this in over 20 years so didn’t get much info they wanted to send it over for review with the MDT before I am seen back in clinic have put me on txa for three cycles before I’m seen again I get severe abdominal pain and back pain severe heavy prolonged bleeding on my cycle and sex is painful I have literally been told nothing other than the name of what the biopsy found and not due back to go to clinic until June/July time… what is next does anybody know I’ve scoured the internet for info cases and there just doesn’t seem to be anything out there 

I was told APSN are extremely rare so there is not a lot of information out there unfortunately.  

For me, I had the biopsy in November 2023, a d and c, coil fitted and was told everything looked ‘fine’ so the biopsy was not marked as urgent. The results came back on 15th February, I seen my gynaecologist on 22nd February and then I’ve pretty much been fast tracked now to see the Professor in the field of APSN in London on Monday. I’ve had CT pelvic scan already and also a MRI. I have to have a thorax scan bloods on Monday together with a consultation with the Professor in this field.  My APSN has come back borderline and was told with this result it does not always act alone so they doing all the checks they need to before booking me in for an hysterectomy as that is the treatment for this type of growth. Have you had a traumatic birth in the past? Mine is as result of a uterus split and placenta rupture March 2019.  If you type in the full name APSN on facebook, there is a support group set up, only a few of us on there but may help to chat on there going forward. We cannot mention our names or hospitals on this site unfortunately.

My last birth I had a low pap- a reading so had growth scan I was induced only a week early went into labour but I didn’t fully dilate and pushed her out at 5 centimetres had to have my cervix pulled about to get her head through I then went on to have a positive smear with high grade dyskaryosis (severe) and had the loop treatment which resulted in just about my entire cervix being burnt away to remove the precancerous cells this left a lot of scar tissue so couldn’t have the hysteroscopy awake was to painful and they couldn’t get through I had that done in November didn’t hear nothing until the hospital rang me to get me in to see my consultant and then was told what they had found and that’s about all I know I’m not back on the clock until June/July time 

My last birth I had a low pap- a reading so had growth scan I was induced only a week early went into labour but I didn’t fully dilate and pushed her out at 5 centimetres had to have my cervix pulled about to get her head through I then went on to have a positive smear with high grade dyskaryosis (severe) and had the loop treatment which resulted in just about my entire cervix being burnt away to remove the precancerous cells this left a lot of scar tissue so couldn’t have the hysteroscopy awake was to painful and they couldn’t get through I had that done in November didn’t hear nothing until the hospital rang me to get me in to see my consultant and then was told what they had found and that’s about all I know I’m not back on the clock until June/July time 

Was all cancerous cells burnt away in November? Or has more been found? June seems like a long time to wait unless they don’t have any immediate concerns and are continuing to monitor you at the moment. It’s so overwhelming when you don’t really know what is going on. Can you ring your consultants Secretary for a chat or one if the support team? Do you have an assigned MacMillan nurse? 

I literally got told what the diagnosis was and told they was sending the findings for review and that’s all I was told no checks to see if it’s contained no scans blood ultra sounds nothing I had a negative smear after treatment and was told they needed to review my case so would see me in three months so suppose I’ll get more answers then and start whatever treatment that is needed thanks for listening 

What did they say the diagnosis was? If they’ve diagnosed cancer surely you would be fast tracked? I’d ring the consultant to be sure. However, if they said see you in a few months it cannot be cancer as it’s the two week rule. I hope you are ok. You should be starting treatment within a month I believe it is if it’s a cancer diagnose. 

Hiya, if they suspect aspn they send it to either of the specialist centres in the uk where they will review your biopsy. Once they have confirmed a diagnosis of aspn they will transfer your services to the specialist Centre. I would chase it with your consultant in a week or so to hear if anything has come back

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.