Hi ladies, 

So hapy to see recent posts on this chat as I had no idea where to even look to find someone to talk too.

I have been having a lot of abnormal bleeding for the past 2 years. Daily bleeding for most of the 2 years, GP have tried me on every pill, injection, available but nothing stopped it.

4wks ago i had biopsys taken by gyno and she called me on Wednesday to say the have been seen at that hospital and transferred to specialists at Ninewells and they blieve it to be Placental Site Nodule. I am going for bloods at the consultant today then they will get me a pelvic mri before i see Ninewells. Has anyone been down this road there? 

I should add my children are 19,11+8!

thank you for taking time to read :)

Clare x

Hi Clare,

Similar to you I have been having abnormal bleeding & I suffer with Pelvic pain but have been told the PSN isn't the cause of pain, I have had a few Pelvic MRI's which show I have polysistic ovaries as well, I have just seen some specialists last week but I have been doing monthly urine& blood tests, and I'm due to have a smear soon and currently Under surveillance by the specialists in London. 

my son is 5 and I was on mirena the whole time after so I too was shocked  

it's great that you are seeing some specialists hopefully they will give you some more info once you see them and good luck 

take care x

Hi lovely, 

thank you so much for the reply . 

So sorry that you are still in pain and they arent doing anything! Did they give a reason to why they are just monitoring you and nothing else? Just seems very unfair!

Clare x

Hi Ashbash98

I was just wondering if you have had anymore appointments regarding this?

I have my pre assessment this week as they are giving me a hysterectomy.

Hope you are ok

Clare xx

Hi Clare, 

hope your okay! And I'm due to have an mri in Feb and see what that's saying.

so sorry to hear that. How are you doing and have they said why they will do that? I'm thinking of you this sounds like a really hard time 

take care xxx

Hi! I was also diagnosed with APSN. Today I am going to consult and test results. I would like to ask how your treatment is going? Maybe someone can give me some advice?

Hi everyone 

Hope you are all doing ok.  It's good to see other people's stories here.  I have recently been diagnosed with APSN.  This was discovered after several years of irregular bleeding (had ultrasounds/smears & nothing showed up) from a biopsy.  It is likely due to having to have my placenta removed by operation when my child was born.

I have received MRI/CT scans (at my local hospital) which were clear and have been sent a tumour marker test to do in the post.  I have also been advised that I will need a hysterectomy within the next 2 years as there is a 15% chance that the APSN could turn cancerous in that time frame.  I am currently on surveillance so have to have another MRI in a few months and do tumour marker tests every month.

It would be good to hear how everyone is doing especially further down the line - what symptoms you have/how long surveillance can last/if anyone has had a successful pregnancy after APSN/how hysterectomy went etc.

Thought I'd say hi. I got diagnosed with apsn in late 2020 and had hysterectomy in early 2021. Loads of MRIs, CTs, x-rays and blood tests later I'm still in surveillance but everything is clear so far. I had an infection following surgery which meant further surgery but otherwise it's been fairly smooth sailing. 

My only symptom was intermittent bleeding after sex, I was otherwise fine. Been an emotional rollercoaster but it's nice to find others with similar experiences. I'm due to be on surveillance for 5 years post surgery. 

Hi Bumblebee87

Thanks for posting, there doesn't seem to be many places to speak to anyone about APSN as it's so rare!

Can I ask did they advise you to get a hysterectomy as soon as possible and how quickly were you on the waiting list for (it might vary depending on your location/urgency etc though)?

I was given the option to go on surveillance but told I would need the hysterectomy within about 16 months (think I'd put 2 years above but made a mistake).  Do you get MRI's and CT's every 6 months?  At the moment, I am only down to get an another MRI but that could be as I haven't had a hysterectomy yet.  I am concerned at how many MRI's/CT's there will be as they themselves are a cancer risk!

There's been nothing mentioned about x-rays either.  Are the blood tests hormone level tests or is it just the tumour marker kits?

Hope you're doing well now.  I'm just a bit worried about the surgery itself and going straight into menopause after it as I feel I am still too young for that!