Freaking out about having symptoms

Hey,

I've just had a smear result come back as high grade dyskaryosis and have been sent for urgent colposcopy.

I'm medically trained and had been going to my doctor 3 or 4 times complaining of bleeding inbetween periods (I've never had problem periods), heavy bleeding with clots, bleeding after sex, back ache, o and stomach cramps. So far been treated for BV despite it not showing on a swab and me arguing that there was something more serious going on. 

My smear was cancelled twice due to this bleeding. 

I know what CIN means and about the treatment as have seen it done many times.

 

What I want to know is, has anyone else had symptoms and what happened to them? Did anyone have severe symptoms and it turned out to be ok?

 

I have a baby son and am struggling to take my own advice regarding this.

 

Hi lissy. I just thought I would drop a line and say, that I had high grade changes cin 3 too. And I know how scarey it can be and you are not alone. I was a mess. I never had any symptoms like you, but didn't want to read and no reply. And I am sure you will get more info off ladies on here, but dont just jump in and think the worse there is loads of other things that could be causeing your symptoms. I am new to this site too, but so glad I found it. As it really helped me get through a really scary time. And it will for you too. Let us know how you get on with your colposcopy. And write in any time as all the ladies on here are great and know more than me. Take care love sky.. x x

Hi Lissy, I was feeling fine when I received my screen result severe dyskaryiosis/?invasive carcinoma, just 2 weeks ago.  If you had any advanced disease going on - I think your smear test might have shown the ?invasive carcinoma as well as severe dyskaryosis.  It is so hard not to freak out, but if it reassures you at all, I had to go to my GP as I 'developed' (in my mind) ALL the symptoms of many different cancers.  (He had to work really hard not to laugh at me as I described them all to him).  He is a lovely man, and added on the end "and all this has happened just since you got the letter?).

I'll DM you

 

 

 

 

 

 

 

 

 

 

Hi Lissy,

not sure if my reply will help or not.  I had no symptoms other than some lower back pain which I was managing with painkillers as it had got quiet problematic - never linked it to cancer of course! A someone has said, your symtoms could be caused by other stuff too but the most important thing is that you are now in the system and you will be looked after well if you do get a diagnosis of cancer.  We're all here if you need us and ask as many questions as you like

xx

Thanks for all of your replies, I’m alone a lot as my hubby works away and family live far away so this is really comforting to me.
The symptoms were actually the reason I booked my smear after having my little boy, I kept telling myself bleeding after sex and stomach pain were due to my coil or cervical erosion or something else etc. until it got very severe and my husband said it’s time to find out. My coil has been in for 8 months and the pains have only been there for the last 3 which makes that a less likely cause and I have been told I have no erosion. Another thing bothering me is that when I was pregnant a junior doctor looked at my cervix, then told me she needed the senior doc to look. He told me I must have a smear as soon as could after I had my baby. Little things like this are things I had paid no attention to but are now playing over in my mind.
I know the stats and the success rates for this treatment but even my doctor seems concerned about my symptoms and has sent me for a scan as well.
There was no ?invasive carcinoma thankfully though
Thank you guys for taking the time to reply, it’s putting my mind at ease a bit and giving me some support x

Hi Lissy,

           I had symptoms for over a year before i had my smear, i went to the GP  but was told that i couldnt have a smear yet due to not turning 25 at that time, on my 1st smear i had abnormal smear, cervical ectropium and severe inflamation, over this last year i have had 4 smears 3 biospies and i had cold coagulation in Decemeber. My last smear and biospy after the cold coagulation was normal....HOOORAAHHH.

However i was taken to hospital 4 weeks ago with Pelvic Inflammatory Disease and despite all tests and screening they cannot establish a cause. I had never had regular periods but it was only 2-3 years ago did i start getting sex related pain and bleeding and it all seems to have just gone down from there. I had a laparoscopy last october which showed absolutely nothing wrong and 4 months later i have a severe pelvic infection.....I am confused.

hope this helps in some way

 

Hey Megan,
It seems you’ve had an infection possibly all along. Smears show inflammatory cells but don’t test for infection. I’ve been tested for PID while with my husband as I had an ectopic pregnancy before I fell pregnant with my son and pelvic infection is a common cause. It would also give all the symptoms you describe. My tests came back negative and my op to remove tube and pregnancy showed adhesions wrapped around the affected tube caused by endometriosis.
So sadly, this is an unlikely cause of my symptoms. I’ve actually now been bleeding for 12 days which is a little worrying as my periods have only ever lasted a day or 2. Feeling very scared and confused.

Hi lissy. I had every single symptom you have and also had to keep cancelling my smear. I'm on cerazette so have maybe 2-3 periods a year and then suddenly it was like I never wasnt bleeding. I had myself in a worrying state as I am also a mother, but to 3. Mine came back CIN 3 after my biopsy and had lletz done 4 wks ago nearly. My doctor was amazing and booked my smear the next day regardless and also arranged a scan for me to help put my mind a little at rest until results came back. Unfortunately I'm having so many problems after the lletz and haven't even received my results back. These symptoms can occur and some ppl get no symptoms at all. It is scary though and I'm so thankful you put this post up as its still played on my mind as no one I knew got the symptoms like I did and this has made me more at rest. Hope everything goes well for you x

Thank you so much for your post. This was my first smear as am 26 and been pregnant so couldn’t have one then. I’ve been sent for a scan…have you had this yet?
My understanding was that CIN doesn’t cause symptoms, cancer does but am now seeing symptoms happen with CIN.
Best of luck with result, please let me know how it goes. Nice not to feel alone, please keep me updated.
Thanks to all of you for the support x

Hi. My thoughts were the same. The symptoms were symptoms for cancer and I had prepared myself for the worst. My scan came back clear, but I'm still waiting for the results from my lletz so hopefully I get the all clear as I've had nothing but problems. Im 32, my youngest child is 4 and this is the 1st abnormal smear I've had. The one I had after my son was born was normal so assured myself that if it was cancer it hadnt had long to build up. Hopefully you will be fine and that we are just unlucky with the symptoms. Keep me posted and I'm glad I could help with my reply x

Hey,
What kind of scan did you have? I’m really glad it came back clear, has put my mind at rest a little. I’ve got my colposcopy appointment through today, but it says you can’t have it done bleeding. None of the secretaries are answering the phone when I phone to say I am bleeding and can’t stop it but need the colposcopy. My GP is going to look at me and give me drugs to stop the bleeding in time for the examination. My Mirena coil had practically stopped my periods so this is so unusual for me.
I really hope your results come back clear, you should know soon I hope.
Please keep me posted, I know we are strangers, but you are really helping me stay calm most of the time. Which helps with a 9month old to look after.
I really wish the best for you and hope that, as you said, we have been unlucky with symptoms x

Hi Lissy,

           I thought i had probably had the infection for a while, but a laparoscopy i had in october did not show anything at all, infact the consultant remarked on how pristine my insides looked. Then the colpsoscopy i had in december led to a rupture of my cervix....which the consultant was very suprised by and i eneded up having cold coagulation without anaesthetic.

Now i am back on yearly smears and finished the months course of antibiotics for pelvic inflammatory disease (the 2 antibiotics they gave me for 2 weeks initially didnt clear the infection completely so i needed another 2 weeks of a different antibiotic) and i dont know where i go from here, nobody is interested with a follow up, i am still getting some pain but i dont want to tell any family or friends because they are so worried.

Infection often won’t show on laparoscopy as it looks at the outside of the tubes, uterus etc. infection will damage the inside of these. Needing a lengthy course of antibiotics for PID is not unusual as there is lots of places for infection to hide and many bugs show resistance.
My advice to you is this, go to your GP and explain that is has not gone and how much it is effecting you and your life. Get re-tested for infection (to check it has gone/still there). If it has gone, get re-referred to gynaecology. They can look inside if they need to (often under GA) but can be done under local to see what is happening inside. Sadly, however, a cause can often not be found for gynaelogical pain.
Hope this helps x

Hi lissy. The scan I had was to check my womb and ovaries etc. to see if there was anything abnormal or a cause for what was happening to me as they found nothing I put it down to the cell changes and the doctors also had no idea what else it could be. The whole experience is stressful n leaves u so tired from worry. hopefully ur coloscopy will have better results for u to put ur mind at rest. My nurse at the clinic told me that the cell changes are due to HPV and unfortunately this is a process we will most likely keep having as once u have contracted HPV it stays in ur body. But the smears help detect when it's active and the treatment stops it from turning into cancer. I hope they can stop ur bleeding for the colposcopy, I was lucky and stopped bleeding that morning. When u have the coloscopy speak to the nurse about what she sees it really helped me x

Hey Frankie,
Was it an ultrasound scan or MRI etc? HPV strains 18, 16 and 33 are most associated with cervical cancer and changes, if you’ve had sex you’ve probably had contact with HPV. Most people deal with the virus and it causes no bother, same way as most people have had herpes simplex virus but most people do not get cold sores. Some people do get cold sores the way some people are affected by HPV, and is similar to how it goes away and comes back.
My colposcopy has been moved to Monday which is a relief, so hoping to get more answers then x
Thanks for your responses x

Im also medically trained, have bleeding after sex for past 7 months and had changes to discharge which only cleared up a month ago. I have been back and forth the GP regarding these issues. Mild dyskaryosis Nov 2012 and Severe dykaryosis june 2013 but havent been referred!!! i qualify for referral but my gp wont refer me and thinks a 5 minute appointment is sufficient for 3 related problems and baring in mind i was very upset and worried.

Feeling completely let down and scared and trying to find a loophole in the system to get a colposcopy! really hope i dont have to go private as I am still studying in university and have very little money!