2 week referral suspected cervical cancer, normal smear early 2021?! Hoping to hear others stories please!

[Noteasybeingbreezy]

Hi all

Been a hell of a start to the week! I had a GP appointment yesterday because I’d had some bleeding after sex (sometimes) and some pain during sex randomly, but in last couple of months it’s been almost every time. I didn’t think about it as being related at the time but also having regular nausea, some weight loss and very lethargic (but I thought this was due to ongoing gallstone issue - I had my gall bladder removed a few months ago and symptoms did improve but unfortunately not gone away). Also recently been having quite a lot of watery discharge, but no odd smell at all and it’s clear or very light milky colour (TMI - sorry 🤦🏼‍♀️😂)

GP did speculum exam and said she was going to swab me, then when she looked at cervix she said she could see quite a bit of redness and irritation and then when she felt my cervix she said there was roughness and on that basis she wasn’t going to swab me and was 2 week referring me for cervical cancer check.

First I’m confused as to why that meant she couldn’t swab there and then, has anyone else had this?

She mentioned that it could be a cervical ectropion but they should still feel smooth and that the roughness in texture that she felt on my cervix was what lead her to believe it could not be and what warranted the urgent referral.

To be honest I’m just in shock, I was not expecting this at all as had a totally normal smear back in early 2021 so wasn’t even due my next one yet!

Has anyone else had a similar experience and what happened to you? Would so appreciate anyone else sharing, I’m feeling very alone in this, we have 4 children and I don’t want to tell my husband yet as he’s so stressed as it is and he’s such a panickier so don’t want to worry him unless there’s definitely something to worry about.

Thanks so much for taking the time to read this xx

p.s. I turned 30 this year 😊

Gynae waits are so horrendous that the only way you would be seen within around 7 months in our area is to refer on the 2ww, just to get things ruled out.
Hopefully it’s nothing sinister and it’s just the dr wanting you to be seen sooner rather than later. I know how worrying it must be.

I think the threshold for referral is very low so hopefully they're just being extra cautious xx

Thank you so much for the reply, that’s really reassuring so hopefully it was just a case of her wanting me to be seen as soon as possible to be on the safe side xx

It sounds very similar to what I had except my gp told me it was the ectropian but that she would refer for a colposcopy as that was still required due to symptoms.
I was referred in may and had the appointment 2 weeks ago.
At the gynae appointment consultant did internal ultrasound, and examination with speculum. Confirmed ectropian treated with silver nitrate. Did swabs for the discharge seen. Then told me that due to the normal smear test in 2021 and what he could see he did not think it warranted the colposcopy and wasn't concerned. Swab came back normal and I've been discharged and told to just attend next smear appt as normal.
Sounds like your gp is being proactive in getting you the appt. Tbh I was shocked when I first sat in consultants room and he mentioned cancer as that hadn't been mentioned by my gp and I knew I'd been waiting 6/7 months at this point. Better to get checked out and hopefully it's just the ectropian

Even if she’d swabbed you there she wouldn’t have been able to tell if there’s a change in cells. This has to be done through a biopsy. I was referred for one last year and it was fine. Now I just have a smear every 6 months to keep an eye on it. Good luck!

@Noteasybeingbreezy have you been seen at the hospital?
I've got a ct scan next week for ongoing pelvic pain and I'm thinking all sorts.

I had this earlier this year. Went to gp she checked and said cervix was red. She referred me to hospital. Consultant checked and said ectropion treated it with silver nitrate there and then. I was so worried but cervical ectropion is very common, try not to worry easier said than done I know xx

GPs tend to be very cautious, and if there is any chance at all of cancer, they do not risk it. Most 2 week pathway referrals are fine, but please take some comfort in knowing that you'll be taken seriously, and whatever is wrong will be dealt with quickly.

It's times like this, we see the best in our NHS.

Thanks all for you messages 😊

I was given an appointment for a colposcopy exactly 2 weeks after seeing the GP. We went through consultation discussing symptoms and he told me that he would have a look during the procedure and decide from there as often it’s nothing or an ectropian that he could treat there and then.

During the colposcopy he said he could see abnormalities and needed to take a biopsy, and he ended up taking 3 biopsies. I asked him after what he thinks and he said to wait for results and that he was certain there will be HPV present but probably not cancer but we’ll see… he was not exactly reassuring lol.

But for anyone else nervous about having one, the biopsies really didn’t hurt much at all, he had me cough as he took each one and I barely felt a pinch. I had some mild cramping for a couple of hours. The nurses assisting were so wonderful and extremely skilled in the art of distraction haha.

So all of the above was on the 12th December, and I’m still waiting now for results. The leaflet said results about 4 weeks after colposcopy, but the nurse said some people are waiting 8-12 weeks at the moment to hear back, and with the bank holidays of Xmas and new year etc, no idea when I will hear back, but it’s not even been 4 weeks yet so can’t really be chasing.

At this point I’m assuming no news is good news and if it was anything super sinister someone would have been in contact sooner? X

@Retta1809 That must be really worrying! Have you had other testing done or they’ve jumped straight to CT? X

@Noteasybeingbreezy I've had bloods done, a FIT test of my stools and an ultrasound and everything came back clear so I was sent for physio as they thought it was maybe muscular. The pain eased a bit but it's back again, this has been going on for nearly 2 years.

Fingers crossed its good news for you 🤞🏻 x

Oh I’m surprised they didn’t give you a local anaesthetic for the biopsies? I cried when I saw the needle going up there but the nurses are fantastic thank god! I had a biopsy last year and have to have another this year again. Hope it’s good news for you x

@Rosiiee they did which wasn’t great of course but I’d heard the biopsies were still painful despite this but actually I found them fine!

Thank you very much, what led to you needing to have another biopsy a year later? Hope all okay xx

I had this last year, it was CIN3, I had a lletz treatment and a biopsy. Unfortunately I then haemmoerged and ended up an in patient twice. Took 6 weeks for the results and they came back only cin3 thankfully but all removed so il now get 6 monthly smears for 5 years. I also had a clear smear in 2020.

Gosh that was a long wait! I had my smear mid Nov then the results back within about a week then the colposcopy and biopsy on 12 dec and had the results back on 27 dec. I then had my LLETZ yesterday - super impressed with how quick it all was.

now I’m just waiting for the LLETZ results and they said around 4 weeks but judging with how quick the other results and treatment has been, I’m hoping will be quicker

good luck x

@Noteasybeingbreezy did you find out what yours was? I’m in your position too x

@Igglepiggleandhisboat sorry to hear you’re in the same boat. Have you had your colposcopy yet?

I am unfortunately still waiting for the results form the biopsies, it’s been just over 6 weeks so I did chase but they said to wait until 8 weeks and then chase again.

In the meantime the GP arranged for a trans vaginal ultrasound at the request of the colposcopy Dr, which I had last week, and she said she couldn’t see any obvious masses which was reassuring, but that there was fluid in my endometrial cavity (I wasn’t surprised as I’ve also been having lots of clear, odourless water leaking frequently (most days)) but she said poor visibility of endometrial cavity due to my IUD so no answer as to why. She wouldn’t say much else just said GP will discuss next steps - I have another appointment with GP next week so hoping biopsy results will be back by then, but not sure where this will go then if they come back all clear 🤞🏻x

Hi @Noteasybeingbreezy have you had your results yet?

Hi @Lulabella22, funny you’ve messaged today as I’ve literally just come out of a gynae appointment!

My results came back just before my last GP appointment and showed HPV present and mild cell changes but thankfully no cancer, I was so relieved!!! 😊follow up smear in 1 year now.

Unfortunately symptoms have not improved and that combined with the fluid found in my uterine cavity on ultrasound meant that the gynaecologist I saw today has referred me for a hysteroscopy and laparoscopy under a general anaesthetic, she advised urgent path wait time is around 8-12 weeks. So I’m not really much the wiser and Dr Google is not giving much either haha, but I appreciate how thorough they’re being and guess I’m still in a wait and see situation.

Hope all is well with you? X

@Noteasybeingbreezy that's great news on your results, hopefully you won't have to wait too long for the other procedures.
I read your post and my current situation is similar. Clear smear in early 2021. I did have lletz treatment for mild to moderate cell changes just over 20 years ago but every smear has been clear since. In Feb 22 I had a miscarriage and ectropion and a polyp was noted at the time so I was referred to colposcopy for a check a few months later and that's literally all she did, she had a look and said all fine. I then had another miscarriage in December 22 which led to a hysteroscopy in Jan 23 to remove tissue. Fast forward to this Jan. I've had ongoing stomach issues, had an abdominal ultrasound and gastroscopy and all fine. But I had a strange period at the time and with my anxiety levels sky high anyway I decided to get this checked out. Doctor said I had cysts on my cervix and it just looked "weird" so I was put on the 2 week referral for colposcopy. I had that appointment last week. They said the ectropion looked different from 2022 and took 3 biopsies. I try to remain rational in that my last smear was clear all be it 3 years ago now, I've had a hysteroscopy 12 months ago and nothing was noted then, I also had a clear transvaginal scan in May 23 and I've had an abdominal/pelvic ultrasound 4 weeks ago where my ovaries and uterus were fine. The consultant said he thinks what he is seeing is ectropion but he wants to be sure he's not missing anything. The biopsies just came as a shock and have knocked me sideways. I don't have any bleeding or pain symptoms, as in after sex (although after 2 miscarriages that area of my life isn't as active!) Or bleeding in between periods. The 6 week wait seems an eternity and I'm only 4 days in 😢
Hope you get your other appointments through soon, at least having a date is a step forward isn't it x

@Lulabella22 ahh I’m sorry to hear about what’s going on with you at the moment, that sounds like a lot! It is really scary when you get referred on the 2 week pathway, and you’re told you probably won’t need biopsies and then you end up needing biopsies, it can be a lot to process. I think trying to keep your rational head on it exactly what you need to do. I like to always consider every option, and something that helped calm me was that even if worst case scenario it did come back malignant, it’s a very very very slow growing cancer, so with the fact you had a hysteroscopy back in Jan 23 would suggest that even if there’s been a change, it would be so early staged that it would hopefully be fairly simply resolved. I dunno if that helps at all but I found it made the wait for results more bearable for me.

I’m so sorry to hear about your miscarriages, got everything crossed for an all clear from the biopsies and hopefully an explanation for what’s been causing them xx

Can anyone offer any advice , I've had a Drs appointment this week for a similar issue as OP, I had some spotting for a few days after my period ended this month , Dr and nurse both took a look and said that there was scarring or lesions on my cervix (had a normal smear in dec) so they have referred my for an urgent 2ww hospital appointment, with suspected cervical cancer - I'm honestly terrified and can't stop googling now, thinking I have symptoms of cancer and just working myself up into a frenzy ! My appointment came through today so I have to go on the 9th April - can anyone tell me what to expect at my appointment? Has anyone had similar experiences?

Hi @artteacher82 sorry to hear you have had a referral but my advice would be don't panic ! I got myself so worked up and went right down that rabbit hole. Massively regret it, I upset my whole family with my worries because I made myself physically sick, convinced I would get bad news. No one could tell me otherwise because id read so much on Google. So first off step away from Google! I was in the same situation, told my cervix looked "weird" and put on 2ww. At colposcopy he said there were "changes" and took 3 biopsies. This completely floored me but guess what, they came back 'No abnormalities ' !! All that stress and upset for nothing. So put your appointment to the back of your mind now, easier said than done but no more googling. Then at your appointment they'll explain what will happen first, examine you, apply the liquid that shows up any cell changes and go from there. If they think it's necessary biopsies may be taken but again don't panic if this is the case.
No one can tell you what the scarring or lesion may be, if it's even that, but I have ectropion which is common and the cause of spotting in many cases. I also have scarring from previous lletz treatment. Please try not to worry.

Good Luck xx

@Lulabella22 thankyou for your message ,I'm doing my best to step away from Google ! Glad your results were clear 🤞🏻 crossed I will be the same x

@artteacher82 Jo's Trust has lots of information regarding colposcopy and cell changes and there's a forum too, lots of women going through this wait, 99% positive outcomes! If you visit the site, I'd say don't go on the cancer section. It's not something you need to read about if you aren't in that situation. Stick to what you know right now which is, only 3 months ago your smear was fine! Keep us updated x