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10 years late for my smear... severe dyskaryosis

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10 years late for my smear... severe dyskaryosis

So I got a letter today after having my smear test on Monday of this week, HPV found (which I expected) and high-grave (severe) dyskaryosis (which I absolutely did not expect).

I think I'd be able to remain calm if I'd been keeping up with my smear tests, but I haven't. Back when I was 18 I was having gynae problems, and my Mum, having worked as a nurse, pulled some strings and forced them to do a smear test on me. I'd become sexually active quite early so she was keen that it get checked. The results came back abnormal. But I also had genital warts at the time so I didn't think too much of it. I think they did a biopsy? I don't really recall. As an 18 year old I was more concerned with the genital warts. Anyway, after that they wanted to check me every 6 months. I did that, for maybe a couple of years.

But then I found myself suffering from what turned out to be Ehlers Danlos Syndrome, and I just didn't have the energy to keep up with my smear tests. Long story short, it had been 10 years since my last smear test. I finally decide to have one, and this is the result. I'm feeling so scared, stupid, and restless. I just can't seem to settle. My brain is whirling with "what if it's been cooking these past 10 years?", "what if it's too late?"

The main symptoms (aside from back pain and I put that down to my EDS) just weren't a problem for me. In my early 20's I did bleed for literally 8 or 9 months straight, but I got diagnosed with PCOS so we assumed it was just an imbalance. Whenever I'm on the combined pill, my periods are "normal". I came off the combined pill late last year and I've only had two periods since then, both light. But I also gained a LOT of weight since my mid 20's, so I figured again, PCOS. Despite only having periods maybe twice in the past 10 months of so I was getting a lot of symptoms of period without it showing up, and spasms in my cervix. I put it down to PCOS again. I've also had really bad pain in both my bowel and bladder when I do have my period (it seriously makes me scream), but when I'm not on it doesn't happen. Though, I did have it happen when I was having cervical spasms but no bleeding.

Also more recently, I found myself unable to use tampons any more. My cervix was sitting way too low to be able to wear them. And perhaps the past 5 or so years any pressure on my lower abdomen has been very painful (I had an ultrasound a year or two ago that was so painful I could have lamped the poor technician! They ended up having to do it internally anyway, as they always do. Pain for nothing!).

Basically a lot of neither here nor there symptoms that to me, didn't tally with cervical cancer at all. But now I've got this result I'm petrified that all these gynae symptoms I've put down to PCOS or my EDS and been ignoring have been these cells in my cervix changing and getting worse. I'm 30 now, and since this morning I can't stop crying at my stupidity. I'm terrified my missing the smears, ignoring symptoms, means it's already developed into cancer and I can't stop crying.

I know this is really stupid... but I can't seem to stop. I know no one can tell me if I do or don't have cancer... but with this information in mind, has anyone had similar? I just can't rest. I'm so scared.

[edit] forgot to say they've told me I need to book in for colposcopy and i'm really nervous. EDS sometimes means that local anaesthetics don't work. Add into that for some reason I'm extremely squeamish about genital things, I can sit and watch an autopsy while I eat my dinner, but anything to do with vaginas and I go green!


Hey lovely, 

Try not to blame yourself, there are lots of people who have missed smears and have great outcomes. 

The most important things are your changes have been found and they can be treated/monitored. You also you found this forum and it is full of amazing people who have experienced many different things and are here for you Day and night.

No matter how scary it may seem you will get through this and any time you need somewhere to rant/share/ask for help this forum is amazing. Try to take one step at a time, the waiting is awful, whenever I have gotten any appointments for anything I have tried to be really cheeky and move them forward just to try and cut back the waiting :) 

book the colposcopy, it’s no where near as scary as it seems, you can take someone with you for support.

Much love 

Emma xxx

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 


First of all, let me say that I know exactly how you are feeling now...Reading this sounds like me...I haven't had a pap test in 25 years with last one being abnormal (25 yrs ago), and I was so scared that I never went back (Stupid of me I know). So here is how my story begins. I had abnormal bleeding for the past 3 yearg(bleeding more often, heavy periods and some spotting in between)...It started where I had a heavey period that last 7 days, followed by 5 days of spotting, and then another full blow period that last 8 days with lots of clots so I went to hospital (for fear of the blood loss I was having). This was 3 years go.  They gave me an ultrasound and pelvic ultrasound along with pelvic test...They don't do pap tests at hospital in emerg...He asked me with a strange look (when was the last time you had a pap) which kinda made me think he saw something at the time but I brushed  it off thinking it was only a question (at the time). I was diagnosed with fibroids that the ultra sounds showed ...The doctor in emerg give me a ob/gyn number to call, and I never called because after all, the pelvic and ultra sound proved okay with just fibroids so why go right? I know now it was stupid of me as he must have saw that my cervix was abnormal. 

Fast forward 3 years later, I went to my family doctor and after a routine blood test he noticed I am severely anemic and I told him I had fibroids with heavy periods...He referrred me to a ob/gyn doctor, well at this time I knew I couldn't avoid it...I had the pap test, pelvic test, and everything else and it hurt like hell to the point my legs were shaking...I bled more then usual after as that is what she told me...She also asked me while checking me out if I bleed after sex (so at this point, I knew she saw something).  My family kept saying don't  look into that question, yeah, well she didn't ask this before only when she was inside me to give her info if what she saw was cancer or a precancer

And this is where I hope it relieves your mind, I thought for sure she was going to say Cancer...I mean 3 years ago, abnormal bleedling constantly, 25 years ago it was slightly abnormal,  and the emerg doctor saw somethng too by the question he asked me right??? as this had all started coming back to me now. I also been suffering back pain for the last 3 years. I thought for sure it turned into cancer in all that time...I, like you,  started thinking, was the abnormal bleeding all the time cancer and I ignored it, was the hurting of the pap test and pelvic test because there was a tumor there, all sorts of things were going through my mind..like the back pain etc...I was terrified, crying nightly, praying to God daily.

I surprisingly was diagnosed with severe high grade precancer (not cancer) that was successfully treated with a cone biopsy...I have clear margins and they got it all...God was with me on this one...Now I must have had this where it was low grade 25 years ago because I haven't been sexually active for many many years, so I must have had the HPV in my system since at least when I was in my 20's...I am a 50 year old woman now and I got the all clear and go for my pap test follow up in October.   So in saying this, just know that it is a very very slow growing and it will take many years to go into cancer. . I thank god everyday I was diagnosed severely anemic to force me into going as I knew if my blood was to low that could cause me death. 

More Information

Abnormal cervical cells and treatment

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