I hope your okay and recovery was okay for you

ive just been told by gynae that I have placental site nodule, I go to see them on weds this week.

this is the only information I have and whilst I know it isn't cancer, I feel so misinformed and anxious. 
has anyone had this? How did they treat it? 
 

ive been having nausea weight loss irregular bleeding for nearly a year now and have just discovered this placental site nodule 

Hi Ashbash98,

I've had a recent atypical placental site nodule diagnosis (APSN) and went to a specialist hospital to have a consultation and various scans. It's the atypical nature of the nodule that makes it cause for concern. Perhaps they are wanting to do more tests on you to see if it is atypical or is concealing something else.

Mine was initially discovered in a biopsy I had a year ago for endometrial hyperplasia without atypia, where they assessed it as leftover placental tissue and said it's fairly common and often gets absorbed into the body after a bit of time. This was at my local hospital. They saw it again after a number of months in my next two biopsies and decided it was atypical from an ultrasound scan and I was referred to the specialist hospital.

Hope your appointment goes ok tomorrow and that you can find out more about your diagnosis and if they think it's atypical or not.

All the best x

Hi there, 

thank you so much for responding and the well wish! 
 

sorry to hear about your diagnosis, have they talked about the next steps for you yet? 
 

I had my appt today with gynae at my local hospital and she basically said they would leave it there! I'm literally in pain everyday with pelvic pain and my pregnancy was 4 years ago as I was on contraception since then, I'm so confused she said none of my symptoms would be caused by placental site nodule, she didn't say if it was atypical? She didn't feel very helpful at all to be honest. 

she said they wanted me to go back every 6 months for another biopsy ( where they originally discovered it) for a certain time, to me this just feels strange and they're not exactly the niecest of biopsies to keep having done

she booked bloods, mri, and keyhole surgery whilst having another hystercopy biospie to check inside my stomach for any of symptoms causes. I'm not really sure what to do now? As far as I'm aware the closest specialist is London from me and I'm going to speak to my gp for a referral 

take care xx 

That must be really difficult experiencing all those symptoms and no resolution in sight.

I believe mine was diagnosed as atypical from the ultrasound, not sure whether or not they can assess that from just a sample taken from a biopsy.

Sounds like a good idea to ask your gp for a specialist referral since you're still in pain and have other symptoms. Even if unrelated to the nodule hopefully they can help shed some light. They did the ultrasound for me after I said about my pelvic pain although I'm not sure if the symptom is related to the nodule or not.

For APSN without signs of disease the specialist says the options are either hysterectomy or monitoring.

If my pains are not related to the APSN then I may also have to go back to the gp. X

Hello how are you both? I may have been the ine they were talking about 10 years ago.

Hello how are you both? I may have been the ine they were talking about 10 years ago.

Hi everyone hope you are all ok.

following on from our previous talk I was due to have a laparoscopy to investigate my pain and other symptoms etc etc I had an mri before and was told I have a cyst on my pancreas (tail) so I'm seeing gastro in Oct. my op got cancelled and then I found out I was pregnant, so I was took off of gynae. A few weeks ago I had to have a d and c as my 12 week scan showed the baby had stopped growing at around 8+4 and sadly no heartbeat, I had been bleeding but nothing had come away hence the d&c . I was told that they don't think my Placental site nodule would affect my pregnancy and that I am one of the 20% but I prefer to disagree; I'm due to see gynae next wek with another possible hysterscopy. Just want some answers if this will affect my fertility long term as no one seems to have any answers! 
 

sending well wishes to everyone xx

Hi all, 

I've just had a recent diagnois of APSN and came across this thread which has been really helpful.

I've been referred to the clinic but I'm really concerned about what this means for ferility as I was about to start IVF. I've not had children yet, but had a miscariage 2 years ago which is where this all started. I wonder if we know of anyone who has been diagoised with APSN but gone on to have children or completed IVF aftewards? 

beacuse its so so rare there's not a lot of infomration or research availabe online :-(

Hi Jen,

sorry to hear that, I hope your ok, I know there isn't really any info online which really sucks! I'm 24, I was 23 when a biopsy showed I had PSN mine is not Atypical so I can't really help on that stance. I'm currently on surveillance mri blood tests etc etc 
 

I did see oncology  very recently who told me that my fertility 'wouldn't really be affected' or that there isn't any research but we have different conditions mine isn't Atypical , are you under any specialists or gynae etc etc 

take care 

Ashleigh x 

Hi Ashleigh, 

Thanks for your message. I'm not too sure on the differences between APSN & PSN, but assume they must be similar.

I was under fertility investigations initially, who referred me for a hysteroscopy under gynae, who spotted the APSN and have now handed me over to Typhoblastic disease specialists. I'm going for my first round of testing Monday, and have done the postal bloods / urine sample etc. They have said they will monitor me for 10 years. and in first call I had with them they haven't really say anything about it affecting fertility, but I can't help but feel this could be the reason behind my unexplained infertility - got pregnant straight away, had a miscarriage and then haven't had any luck over 2 years on. also don't want to go down the stressful IVF route if there's not much chance of it working :-( . so trying to find out anyone who might have been on a similar journey. 

Hope I will get some more info when I go in for tests next week.

Jen x

Bless you it sounds like your really going through it! Hopefully you will start getting some answers now even if it does feel like there only little steps

I also felt like my PSN could of been the reason behind my infertility I have a 5 year old, was on mirena for 5 years, discovered psn and had 2 miscarriages  

I hope you get some answers and that it will help bring you some ease! I also try to talk to others to see what their experiences are because as I was told it's quite rare and there isn't a whole lot of information about the condition, it's nice to have someone to talk to who understands what each other are going through, I have so many questions that don't ever really seem to get answered or I just get dismissed
 

take care 

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! 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.