Concerning symptoms, urgent colposcopy referral but neg HPV

Hello

I’m a bit confused and wonder if someone can confirm whether my understanding is correct.

I’ve had a smear test every 3 years and the results have always been negative. My periods have always been irregular - some months I get one and some months I don’t.

At my most recent smear test on 31 March, I confirmed the following symptoms:

  • Since Oct, I’m bleeding more regularly (sometimes two periods a month)

  • Sex has been painful for at least the past 2 years. Have never been able to do deep penetrative sex but now it’s a challenge even getting started (have thought possible vaginismus)

  • I have bloody discharge occasionally including after sex and when I don’t have my period - it’s usually thick, clotty, brown/black and dry

  • After most recent intercourse, I started bleeding as if I was starting my period but it only lasted for one day

  • I sometimes have a horrible smell and can smell myself if I’m sitting cross-legged (previous recurring issues with BV but this doesn’t seem the same)

The nurse investigated thoroughly and said she saw the following:

  • Slight blue tinge to cervix

  • Steady stream of blood from my cervix while speculum was in (there was already brown blood at first sight)

  • Some cysts (nabothian)

  • No sign of ectropian

The nurse said she’d recommend an urgent colposcopy and said to follow up with a gp appointment. After my smear, I had pelvic pain and spotting until the gp appointment 5 days later.

Gp did a manual exam and said cervix was smooth and palpable, some brown blood present. She didn’t think there was anything to worry about but urgent referral to colposcopy would be best. Was advised very big wait list for Glasgow and Greater Clyde and colposcopy would normally be within 2 weeks but more likely 6-8 weeks currently.

Smear result came back today saying I was checked for high risk HPV and none was found and would be invited back for another smear in 5 years time. I called the colposcopy unit as the referral was sent on 5 April but I hadn’t heard anything. They told me I was on a waiting list which was around 52 weeks currently. I asked if this was the urgent waitlist and was told yes, but my understanding is this is the non urgent colposcopy timescales.

Luckily my private medical insurance approved a private colposcopy appointment which I have on Thurs 20 April.

I want to check if I’m right in thinking that despite having a negative HPV result, something else could be found at colposcopy? And there should be a reasonable expectation for a biopsy to be done?

My two paternal cousins have endometriosis so I’m aware it could be what is causing my symptoms as they are similar in nature. However, I have never had heavy, painful periods.

I just want to make sure my expectations are correct so I can make sure I get the appropriate investigation.

I am currently waiting for a LLETZ procedure after having similar symptoms with the irregular bleeding. My smear 4 months ago was normal and HPV negative but because of the bleeding and severe bleeding during the smear I was referred on the 2 week pathway. The colposcopy biopsy has shown CIN3 with severe dysplasia and pre cancerous changes. If I hadn’t have had the abnormal and post coital bleeding I would have been unaware of the CIN because of the ‘normal’ smear results.

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Thank you so much for replying. I’ve scoured this forum but struggled to find any mention of someone with similar circumstances.

How did you find the biopsy (if you don’t mind me asking)? Were you offered a local anaesthetic?

Hi,

No LA at the biopsy as he just did it there and then, 2 punch biopsies, more uncomfortable than painful, then period pains and bleeding for a few days. I am going to have the LLETZ under GA though.

Hi I hope you don’t mind me asking, as I’m in a similar position, did you have any visible abnormalities despite a negative smear? I looked at the screen during my colposcopy, I wish I hadn’t. I saw lots of white areas, so no treatment carried out on the day just four biopsies taken and I’ve had a letter to discuss findings next week.

I’m not sure if your question was for me or NikP49 but I’ll answer anyway. This is what was visible during my smear test:

  • Slight blue tinge to cervix
  • Steady stream of blood from my cervix while speculum was in (there was already brown blood at first sight)
  • Some cysts (nabothian)
  • No sign of ectropian

I had my gynaecology consultation on Thursday and he felt an internal scan was more appropriate than a colposcopy. He confirmed all looks OK with my womb/vagina/cervix etc and no endometriosis (although I thought this could only be ruled out via laparoscopy) but what he did find was an ovarian cyst.

It’s 3cm in size. He thinks it’s contributing to my pain/discomfort which we established is coming from my bowel. He thinks the irregular bleeding etc has been caused by a hormone imbalance and has prescribed Noriday for me to take as a double dose for the next 3 months to see if it shrinks the cyst and alleviates symptoms.

If not, I think the next step may include cyst removal and biopsy via laparoscopy- at which point I’d ask them to completely rule out endo.

Sorry I’m new to all this, I’m not sure how to reply to individuals yet, but thank you for answering.
I guess I’m just worried about what I saw and what it all means. I’d say about 75% of my cervix went white with the acid. I bled on contact at my smear, my gp examination and heavily when the gynaecologist examined me. I had the silver nitrate to stop the bleeding and got an infection a week later which needed antibiotics. So say I’d had a clear smear this was all very alarming. I’m dreading next weeks appointment, but I’m also keen for answers. I’m getting married in two months, all planning has stopped x

Not at all @leigh - you just tag whoeever you’re replying to :slightly_smiling_face:

Did the colposcopist say anything about the reaction when they added the solution? My understanding is they’re typically looking for pre cancerous cells which they would remove with LEEP or LLETZ. I believe this is just cauterising them off - usually under local anaesthetic. I think it’s very common as I know quite a few women who have had it done.

Please try not to worry. I know it’s easier said than done.

Thanks @AuntyJoJo
She just said that they wouldn’t be treating me for cervical erosion, which is what the GP thought I might have that’s caused my bleeding after sex, and that they’d discuss things further with me, scans etc once the biopsy results were back.
I’m trying not to google every symptom I have, but it’s just so hard to understand how I’m at this point being HPV negative. She did say a smear is only 70% accurate which surprised me. I’m annoyed I didn’t ask anything at the appointment. What I’d seen on the screen and the fact it took ages to stop me bleeding had me shocked x

@leigh I think it’s common to have questions afterwards. I’d be inclined to note down any you have so you can ask at your follow up. From what I understand, there’s a few things it can be that aren’t the big C. For example, they might suspect something like endometriosis.

I googled my symptoms like mad before I went and convinced myself I had CC but it turns out I have an ovarian cyst and have likely got other symptoms due to my hormones. My symptoms include irregular bleeding, bleeding after sex, painful sex etc

There is a helpline you can call on the Jo’s Trust main website if you’re concerned and want to talk through it :purple_heart:

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Hi @AuntyJoJo i just thought I’d give an update as you were kind enough to reply. CC confirmed today. Just waiting on an MRI appointment to see what stage x

@leigh Oh I’m so sorry to hear that. I hope it’s early stage and treatable. My thoughts are with you :purple_heart:

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Adding to my original post.

Transvaginal ultrasound confirmed 3cm ovarian cyst which the gynae believes is due to hormones and recommended my contraceptive pill to be changed with follow up in 3 months.

Since my consultation, I’ve had a lot more pain than usual. After having my niece at the weekend, I’ve slept a ridiculous amount and have little energy.

I don’t know if I bled during the scan as I was unfortunately on my period, but I’m concerned my symptoms can’t all be down to a relatively small cyst. Gynae confirmed cervix looks normal on inspection.

I’ve just booked in to go back for a colposcopy in 2 weeks and I’m going to request a biopsy.

I’m just looking for some reassurance that I’m not being dramatic. Blood tests have all come back normal, despite expecting my iron or thyroid could be causing some of my issues.

I’m also thinking of requesting a hormone panel to see if I could be in perimenopause, although that still doesn’t account for the pain.

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Adding on to my original post as I’ve been for colposcopy today.

To briefly summarise; nurse was concerned during smear, gp was unconcerned and said cervix felt healthy, but I was referred for gynae anyway due to abnormal bleeding and other symptoms.

Smear test came back negative.

Gynae did transvaginal ultrasound which showed 3cm cyst on left ovary.

Went back today for a colposcopy. 3 abnormal areas appeared on application of solution, so 3 biopsies were taken. Was told 4-6 weeks for result and advised it is likely another (unconcerning) strain of HPV.

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