ASD daughter and first smear

[CakewalkCakeWalk]

My 24 year old has just been for her first smear today, she has ASD. The nurse had to get the GP but was still unable to proceed as the "membrame across has not perforated". Is this the hymen? DD has not been and no plans to become sexually active.

The nurse has referred DD to a gynaecologist to have the smear performed, but couldnt give much information as to how this will happen - will her hymen be surgically broken if that is what the issue is? How traumatic will this be for an anxious patient? The nurse was trying to explain it to me with DD present, so couldnt really give a lot of information as we were trying not to stress DD out!

The referral won’t be to break the hymen it will be whether she needs it at all considering she isn’t sexually active. The gynaecologist will assess the risk & maybe recommend sedation if she does need it.

I didn’t think they did smears if you aren’t sexually active and never have been. Surely in this case the HPV swab would suffice given the fact they only test the actual smear sample if the swab is positive it doesn’t seem worth a traumatic smear test in this case.

I don't think she needs a smear

Has she had the HPV injection ? In which case if never sexually active I'm not sure I understand why a smear would be useful

I did specifically ask if she needed one as she isn't sexually active, and was told yes she does. She has had the HPV vaccine as far as I know (not at home so cant check records but I cant think of a reason why she wouldnt have!).

She is stressing meaning I am stressing. The nurse definitely said the gynaecologist would be performing the smear, but checking to see what needs to be done first - whether that is something they do or whether it is something DD can do at home.

There is absolutely no evidence what so ever, that cervical cancer can be contracted without any sexual contact. There is no medical need to break her hymen in order to perform this examination. I don't know how strongly to say this. She does not have to go through this invasive procedure of having her hymen broken.

@ChateauMargaux

There is absolutely no evidence what so ever, that cervical cancer can be contracted without any sexual contact. There is no medical need to break her hymen in order to perform this examination. I don't know how strongly to say this. She does not have to go through this invasive procedure of having her hymen broken.

Thanks Chateau, I will attend the appointment with her and speak up on her behalf - I have an LPA for health for her.

I have just read that not sexually active means low risk not no risk, that even if only have sexual contact once then that presents a risk. However DD is adamant she doesnt want any relationships - granted she may change her mind!

I have read that HPV can be picked up by non sexual contact but I'm not sure how far I believe this
If I was a virgin who had never had any sexual contact , personally I wouldn't be going through this procedure . Not a chance
I find this quite disturbing and I really hope this isn't just about them ticking her off their smear test quota target

as others have said, it's to check for changes caused by hpv transmission - if she's not having sex she won't have hpv or cervical cancer so no need for a smear

They are going to eventually phase out smears due to the success of the hpv vaccine, I read only last month.

She could ask for home kit
www.england.nhs.uk/2021/02/nhs-gives-women-hpv-home-testing-kits-to-cut-cancer-deaths/
Seems unnecessary to have test done but chat with gynae no harm done gynae can advise on how to keep healthy etc

@YukoandHiro I've seen quite a few posts on here from ppl who've had the vaccine but still got HPV so I hope they don't end up phasing them out

My daughter has autism and a learning disability. I have been advised by GP that she doesn't need a smear test as she has never had intercourse.

The GP (or practice nurse) would be better to call/ email the gynae team and ask for guidance as to whether your daughter needs a smear or not. A referral can take months (quite possibly over a year at the moment) and that causes undue stress for you and your daughter. Politely suggest that they use common sense and speak to someone.

@fedup078

I have read that HPV can be picked up by non sexual contact but I'm not sure how far I believe this If I was a virgin who had never had any sexual contact , personally I wouldn't be going through this procedure . Not a chance I find this quite disturbing and I really hope this isn't just about them ticking her off their smear test quota target

Its unlikely in the UK. All my aunts from East Africa snd India had it, even the ones who never had sex, but it’s probably because of certain grooming / bathing / cleaning practices that aren’t done here. For example it was fairly common to share towels across an entire extended family. Outdoor toilets that are never washed are also a way to catch it - which is why doctors in rural India often encourage women and girls to go outdoors instead (which then opens up the risk of them being raped).

I am very pro cervical screening but I cannot see a reason to test a woman who has had no sexual contact and no plans to.

@ChipPotts

My daughter has autism and a learning disability. I have been advised by GP that she doesn't need a smear test as she has never had intercourse.

Your GP may be being a bit niave. Lots of women with LDs have sex or sexual contact. Unfortunately, not always with consent.

Op do you mean that you have a dd who has a learning disability and the medical profession are trying to force a smear test on her?
I ask because I have an almost teenage dd who has autism and is non verbal and I never actually thought of the possibility of the nhs forcing or trying to force examinations on her as she gets older.

She is entitled to a smear as part of the screening process, but that’s not the same as it being necessary. If she’s not been sexually active then her risk is far far far less than other women her age. The first step of the screening only tests for HPV so I doubt it would be worth the risks of harm / distress. May be worth looking into a self swab for HPV on the nhs or privately maybe for peace of mind.

@Ozanj forgive my curiosity, but how did you come to know of your Aunts' HPV statuses ? Come to that, how do they know - I'm in the UK and middle-aged and don't know mine, do people get tested as standard in some other places?

@YesIamTHATmum

Op do you mean that you have a dd who has a learning disability and the medical profession are trying to force a smear test on her? I ask because I have an almost teenage dd who has autism and is non verbal and I never actually thought of the possibility of the nhs forcing or trying to force examinations on her as she gets older.

I don't know that I would use the word "force", but that may be my naivety. I took her for the appointment but I did give her the choice as to whether she wanted it - explaining the "low risk" etc. She has lost close family members to cancer so wanted to do all she can to minimise risk.

Thanks to all the pp's here, I am more informed for the discussion with the gynaecologist. I will come back to this thread to update, though I think it may be a bit of a wait.

She doesn’t have to have this done, she needs to consent to it.
If she has mental capacity to refuse or consent, she can.
You need to look at the chances of her getting cervical cancer versus the trauma of the procedure.
Does she have the ability to check if she’s had the HPV vaccines with her GP ?