Extremes concerned

Hi all,

For the past few weeks i have been experiencing spotting on and off. It looks like old brown blood when i wipe after using the toilet. (dont need to wear a pad) i have PCOS so my periods are very irreguler but have somewhat regulated since having my children. I gave birth 6 months ago so im not sure if this is hormonal, due to PCOS or something more sinisiter. I recently had a smear and recieved results that HPV is negative and so my sample was not tested. This really concerns me because about 10 years ago (im now 35) i had CGIN that required LLetz treatment, and was told by the gynaecologist that my sample should always be tested regardless of HPV being present or not. This is because CGIN is notcaused by a HPV infection.
I informed the nurse at my surgery of this and also of my symptoms and she wrote all of this down on my sample, unsurprising though, it was still only tested for HPV.
Prior to recieving my results i visited my GP who examined me, she could not see anything on my cervix from inspection but ultimately said to wait for my smear test result, and in the mean time she would refer me for a scan. Im not sure how long this will take but i dont think she has referred it as urgent.
I rang my surgery to see my GP and discuss my letter since recieving it and cannot get an appointment for another 3 weeks! I explained the above to the surgery but i cant get past the receptionist. It just seems like i have to wait 3 weeks just to see my GP, who has already examined me and all i want is an urgent referral to find out whats going on. This on/off bleeding is causing me so much anxiety and with a toddler and baby i keep thinking the worst, especially because of my history and the fact my sample was not even tested.
Does anyone else have history of CGIN and know if HPV was the cause? It worries me that after all these years my sample was never tested and i might now have cancer.
Im considering going private, but its still a few weeks wait and you have to see a consultant prior to any tests being undertaken. I

Hi Ali
With your history it makes sense for you to be distressed and anxious especially with a busy young family

From the information on the Jo’s Trust site, CGIN is linked to the presence of HPV. As CGIN is further up in the cervix there is a complication of it being more difficult for smears to detect it. What this can mean is that with the new system of testing for HPV first that occasionally people can get HPV positive results but clear for abnormal cells as the brush picked up the HPV but didn’t go far enough to get the CGIN cells in the canal of the cervix.

However you have tested negative for HPV which puts you at much lower risk for CGIN. I’m not a doctor I must stress I am just going by the information on Jos Trust and experiences of people in the forum.

However you have symptoms of something gynaecological going on - doesn’t mean cancer, could bbe something benign like ectopian or polyps. It’s worth you getting a referral from your doctor which you are doing so that a closer look could be had. Only you can decide if it’s worth paying out private for peace of mind x

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Hi,

I totally understand your situation. Im having irregular bleeding, back and pelvic pain. My smear test a few weeks ago has come back HPV negative so cells not tested.
I had CIN3 some years ago when it was the old method of testing so am also concerned something is being missed. I dont know if that was caused by HPV.
The pain made me vomit a few days ago so im going back to the gp in the morning.
I know the liklihood of cancer is small without HPV but it can and does happen.
Ive already been referred for an ultrasound but am told theres a 12 week wait.
Will you let me know your outcome?

Wishing you well x

Im sorry your going through the same. Its both worrying and frustrating isnt it.
I contacted my GP again this morning amd asked for a referral to be made. They are reffering me but said it could take some time, so i asked for an urgent one as im getting really worked up over this and am still spotting with no sign of it stopping. Im ot sure if it reassures me or concerns me that they dont seem to be taken this seriously…
The GP said it could be a number of different reasons and to not worry too much (easier said than done when youve been bleeding for weeks)
I hope your appointment goes ok tomorrow, hioefully they can make an urgent referral, 12 weeks is a long time to wait. Let me know how you get on x

Thanks for your reply. Thats reassuring about HPV not being libked to CGIN and the fact i dont have HPV. I cluldnt find mich about the link online so i wonder why i was told it wasnt linked to CGIN by the doctor. Its caused a lot of worry for me.
My GP had made a referral, i contacted them again today. Not sure how long it will take but ive also enquired about a private pelvic scan in the mean time. Im hoping this might provide some answers x

Hello,

I’m really glad you got referred for a scan, that’s a good thing, and it sounds like you’re a good advocate for yourself.

My GP was very good and has pushed my scan through under the 2 week wait, so hopefully won’t have to wait long. He did say my negative smear is reassuring but appreciated my concerns. Ive already had hormone blood tests and they were fine and i don’t take any hormonal contraception, which is sometimes a cause of irregular bleeding. Could be something less sinister such as cysts or fibroids.
Fingers crossed we both get some answers soon, please do let me know and take care x

My GP said he would refer me as urgent but didnt say how long. Ill contact them in 2 weeks if i don’t hear anything. Hope your scan goes well and all is ok, do let me know how you get on.
It is reassuring that we both have negative HPV. I cant help but worry though as there definitely must be a cause to why we are bleeding like this.
I am also not on any contraception. Have your period’s always been normal, i.e. regular?

Hi
That’s great that he is pushing the scan forward, hopefully won’t be too long.

My periods have always been as regular as clockwork, so it’s definitely unusual. I’m still having some pain but nothing unbearable. It feels like my period is constantly going to start and the back ache is a dull feeling x

I have that feeling too. It’s like a cramping as if my period is about to start, it seems to come nd go. My periodals have always been irreguler so it makes it harder to determine what’s normal, but ive never spotted continously like this before, thsts why im worrying.
I had a baby 6 months ago and have a 5 year old, this makes me worry more! Hopwfully all is ok and we get some answers soon x