Lots of questions! Exactly how I felt when it all started. Super rare doesn't feel good. It's the club you don't want to join.

I can only speak from my experience but found almost nothing online so happy to share my experiences fairly openly if it helps.

I was advised to get the hysterectomy and they fitted me in quickly. My issue was we couldn't date whether it came from my successful pregnancy or miscarriage so things moved a little faster. Equally my stuff happened during lockdowns so it was all a bit weird full stop. I was given the choice of 3 weeks time or 2 months for surgery once I made the decision and just decided to get it over and done with. 

MRI scans are every 6 months at the moment with an annual CT. The x-ray is a chest one to check the chest is clear and also 6 monthly I believe. 

Blood tests are every 2 months I think now (but used to be more frequent). That's to check HCG levels as an early indicator of things coming back. 

With regards to surgery, I kept my ovaries which means I'm avoiding menopause for now. Also felt too young for that! But speak with surgeons if that might be an option. I had complications post surgery and ended up back in surgery with an infection which is rare and made recovery slower. I took 4-6 weeks to get back to mostly normal and now have some awesome scars that almost look like a six pack if you squint a lot. 

The worst bit now in all seriousness is the anxiety every time I have a test or scan and having to wait for results but nothing can be done about that really. 

Hope you are managing ok and not too stressed by it all. I remember the insane amount of overwhelm and lack of control I felt at the time. Sending hugs and best wishes

Hi

Sorry for all the questions, hope I haven't asked anything too personal.

I thought I would be the same as my only pregnancy was quite a long time ago but they seem happy to let me do the surveillance option just now.  That's good they fitted you in quite quickly even during lockdown.

Thanks for the information about CT's being every year & regular X-rays.  I haven't been told about both of those so I will ask the question.  I thought I'd read somewhere about bone scans too but not sure if that's just if menopause has began or not.

I think for me I will be able to keep my ovaries too, think for some the menopause can arrive sooner than it normally would after the op (even if kept ovaries).  I guess I would just need to hope it would be a few years yet!.

That's not so good about the complications, hope you're doing well now except for the anxiety about results.  Thank you, the waiting on results is the also the worst bit for me just now and not even post op!  I'm also thinking how has this even happened and why!

Hi! I had a chest CT and a full body MRI, blood tests and a Doppler ultrasound. I had an appointment with my doctor and he suggested a hysterectomy. I also need to do genetic tests to check after which child the APSN was created (I have two daughters, 6 and 2 years old). I am waiting for the results. Have any of you had a baby diagnosed with APSN?C

Hi

I've since been in touch with my local specialist hospital and they have advised that it will be an MRI and CT every 6 months and the tumour marker tests every 3 months.  There was no mention of a Doppler ultrasound though.  I thought they would maybe do more biopsies to check the APSN cells again.  

They also said that I don't have to have a hysterectomy as it is my choice if I want to just continue with surveillance.  It was my gynaecologist that suggested I have it within a time frame of 15 months.

I didn't know you had to have your children tested for it.  I really hope my daughter doesn't go on to have it.

Thank you for your answer. The doctor wants to test my daughters because it will show when I developed APSN, after the first pregnancy or maybe after the second. My doctor said that APSN better be in my uterus for less than 4 years because the prognosis is better!

Ah I see, I only have one daughter so I don't have that issue.  I am more than 4 years and at first that was very worrying for me but now I am happy with surveillance as I feel that is the best option for me at the moment.

I don't know what I should think about this! I actually found out recently and I'm still waiting for the results of some tests and maybe it will help me decide what to do next...

Hi,

i've come to the Chat for the same reasons as everybody else really. Due to the rarity of this diagnosis and not knowing where to go for support I have to say for tea. My Monday is absolutely amazing. It's just helpful to have people who are experiencing it? I can understand to talk to.

I was diagnosed with APSN  (very early stage) back in March. This was following a biopsy I had of what they thought was an endometrial polyp. I had IVF with my daughter and she is now 1. Sadly, I have also separated from her father so it's been difficult going through the process. However I have a good friend from 20 years ago. Well more than a good friend. We've got back together and he's been amazingly supportive. He has take me to all the appointments and spend time to listen, even though he is not sure what to respond.

Sadly, I have also separated from her father so it's been difficult going through the process. However I have a good friend from 20 years ago. Well more than a good friend. We've got back together and he's been amazingly supportive. He has take me to all the appointments and spends time to listen, even though he is not sure what to respond.

 I too like other people on this chat I'm stuck between a country of having a postpartum brain wanting more children and balancing that with the statistical likelihood of the lesion progressing. Being honest is completely terrifying as I have a one year old little girl, I haven't even made a will, I'm trying to sell my house and in my heart, I know that hysterectomy is the only sure way of ensuring that I will remain around for her. I longed for her so badly and like anyone who is trying to conceive where it doesn't always go to plan you think that that it's time for happiness when you conceive and then, sadly I got handed this.

The main problem I have is my brain doesn't seem to be able to shift from wanting another child because I have also recently had some follow-up tests for infertility that I didn't have when I paid for my IVF. The NHS would not pay for my treatment, because my husband had children, I had never been pregnant, but the rules are the rules. I do understand it but it's still tough now I have separated from my husband. I can never use the embryos again and it doesn't feel like there's a lot of time left if I wanted to have a child with my partner now who was my first love we were young when we met. And we've got back together after 20 years as something like this and childbirth and IVF makes you evaluate your life. Life is too short to not live for the moment.

 as something like this and childbirth and IVF makes you evaluate your life. Life is too short to not live for the moment.

I feel like I am rambling, but it is just nice to know that perhaps somebody out there can understand the emotional impact of all of this. 

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.