Hi Laura. 

I keep seeing replies from you on many posts. It's very reassuring.

I am 26, I have two children 9 and 5. My periods have always been weird due to being on the implant. But I think in December it lasted a few days longer than normal. Fast forward to this month, I had my period as normal. It lasted around 10 days which is normal, then 4 days later I started bleeding again and bled for a week. Classed as spotting as it was never enough to wear a pad or anything. I phone my GP, explained everything and she didn't seem too worried. She booked me in for my first smear (haven't had one due to Covid) and also said she'd take some swabs 'to be on the safe side' (don't know what they're for?) 

Since speaking to her I've noticed I have lower back pain in a morning which eases off throughout the day. I have groin pain pretty much constantly, it's just a dull ache and I also noticed I had stomach cramps the day after having sex. Te cramps were pretty painful. They eased off in the evening. 

I don't have any smelly discharge, no bleeding during or after sex, no bloating, I'm not off my food and I don't think I've noticed any changes in bowel movement either.. 

Just looking for some reassurance really. My smear is booked for 10th March but I'm ringing to ask if they can bring it forward. I'm due on on the 10th march and all this worry is really affecting me. 

Hi, sorry I didn't see your post until now! I hope you are doing well and you've found out what is going on. At your young age I wouldn't think your issues would be cancer related but it is always good to follow up and keep tabs on things.  Please message me if you need to. 

Laura xx

Hi Helen

I am so sorry to read what you’re going through and especially about your little girl- I can’t imagine how difficult things must be for you and I so hope that her treatment will prove to be very successful. You must have gone through some incerdibly tough times, and been unimaginably worried for her. I’m sure we’ll all be praying for the best of news when she finishes her treatment.

And now you have these further worries to deal with. So, let’s start going through this. The severe dyskariosis is abnormal cells, but the question mark means there is a suspicion that these are invasive ie cancer. But they don’t know this yet. The nurses don’t know, the doctor doesn’t know and only the results from pathology of the cells removed at your lletz will give the definitive answer. 

We all look for clues in body language, and how nurses etc “look” towards us but they simply don’t know yet. 

Your doctor clearly suspects something, and is getting your results fast tracked and having you on the MDT list for discussion. This is all a good thing, although it may not feel like it, because you will have answers quickly and be able to get on with whatever treatment is required. 

Unfortunately it is possible to have a clear smear and colposcopy and still have cancer, as no test is perfect, but it seems like the doctor has just seen cells, rather than an actual tumour, so this would suggest that if this is cancer, it will have been caught early. Again that might not seem positive, but in the world of cancer, it really is. Cervical cancer is very treatable, so please try not to think your daughter will lose her mum. No matter what they find, it can be treated.

You will find out very quickly if this is cancer, and will be thrown into a spin of scans and appointments if it is. Early stage cervical cancer would usually mean having a hysterectomy, often with no further treatment required, so that would be the best possible result if you do have cancer. A hysterectomy is not possible for higher stages of this cancer, and you would have a different treatment plan, but it’s too early to think about that yet.

It’s impossible not to worry, I understand that completely, but what I would advise is not to google, and to take one day at a time without automatically thinking the worst. My diagnosis was 3.5 years ago, was locally advanced (so that means there was some spread) and I had a visible tumour. However, I’m fine now. 

Please use the forum here for help and support. We all can understand the fear, and we know what this is like. Obviously, I hope you don’t have cancer, but if you do we can help support you through.  xx

Hello Minska,

Thank you so much for your quick reply. A lot of what you have said makes sense.

I had a call from a consultant at the hospital an hour ago, to advise me they were going to book me in for an MRI scan, based on what they saw yesterday. He said the biopsy results would hopefully be back by Friday and the MRI would be scheduled for next week.

I asked him if he had seen my previous set of colposcopy results, and he said he had put the two photos side by side and there was a significant change in the appearance of my cervix. He then went on to say that an audit is done for every patient and he when that is complete he will be open and honest with me about why the results are different. Which to me means that they didn't spot the cancer last year.

I am still hoping that it will be early stages, but am alarmed at how quickly they are trying to organise the MRI etc. I know this is a good thing in the long run, but I can't help but think it's because they things it's at a very serious stage :(

Hi Helen

Things are moving very quickly for you which is good, but it’s sad to think something might not have been picked up earlier if that is the case. However, this does not necessarily mean that things are at a very serious stage, just that they already seem pretty certain this will be cancer, and they want to get your scans done quickly so that they can proceed with a treatment plan. My biopsy result was back within a week, and ct and mri scans done within a week of that after a single appointment at the gynaecologist so things can move quickly. xx

Hi Helen, I just wanted to share my story a little bit with you, as I have just recently been diagnosed with cc and have staging mri tomorrow. I have had bleeding during intercourse on and off for around 5 years now and was told it was ecropion and nothing to worry about as my smears were all fine, but over the last year it has gotten so bad that we can't have sex anymore. I had a smear and swabs done last year followed by colposcopy which found minor cell changes. So was given a routine referral to gynaecology last August to investigate the bleeding and I was told I likely had endometriosis.

Fast forward to January, and still no appointment, I experienced random severe heavy bleeding twice in one evening, so my GP referred me for an urgent ultrasound which showed a mass on my cervix. I was given an urgent referral back to colposcopy, where he took a few biopsies and done lletz treatment. A week later I get a call from his secretary asking me to come in that afternoon, and when I arrived he confirmed I had cancer. He had taken biopsies and done treatment  further up my cervical whereas the last Dr did not, which is why it was missed at my appointment last year.

Unfortunately colposcopy is not always 100% accurate and things do get missed, so it's good they have got you back in and getting it sorted it out. Hope all goes well for you. Xx

Hi Helen, I just wanted to share my story a little bit with you, as I have just recently been diagnosed with cc and have staging mri tomorrow. I have had bleeding during intercourse on and off for around 5 years now and was told it was ecropion and nothing to worry about as my smears were all fine, but over the last year it has gotten so bad that we can't have sex anymore. I had a smear and swabs done last year followed by colposcopy which found minor cell changes. So was given a routine referral to gynaecology last August to investigate the bleeding and I was told I likely had endometriosis.

Fast forward to January, and still no appointment, I experienced random severe heavy bleeding twice in one evening, so my GP referred me for an urgent ultrasound which showed a mass on my cervix. I was given an urgent referral back to colposcopy, where he took a few biopsies and done lletz treatment. A week later I get a call from his secretary asking me to come in that afternoon, and when I arrived he confirmed I had cancer. He had taken biopsies and done treatment  further up my cervical whereas the last Dr did not, which is why it was missed at my appointment last year.

Unfortunately colposcopy is not always 100% accurate and things do get missed, so it's good they have got you back in and getting it sorted it out. Hope all goes well for you. Xx

Dre138 you are an early bird

Thank you for sharing your story. My husband and I have been worrying ourselves sick with the potential consequences of this having being missed. It all seems so unfair. 
I have a meeting with the consultant next Wednesday for my results. I'm hoping for the best but know deep down it wil be cc.  
I hope your MRI goes well. Let me know how you get on I'll be thinking about you Xx

Hi Dre

So sad to see you didn’t get listened to and referred earlier. This unfortunately happens too often. A clear smear is not a guarantee someone doesn’t have cancer, and nor is a colposcopy. I wish doctors would listen to women and their symptoms instead of fobbing them off.

I hope your mri goes as well as it can today and you don’t have too long to wait for your treatment plan. xx

Morning Helelen

Will you have had your mri and results from that in time for the appointment next week, or just the biopsy results? 

We all tend to think the worst, I know. I was convinced my cancer would have spread and be everywhere and untreatable, but it wasn’t the case at all. Things are not usually as bad as we imagine they might be,  but fear puts our minds in overdrive. I hope things won’t be as bad as you might be thinking, and treatment for thiscancer can be extremely effective.xx

Hi Minska,

Thank you for your message  

No just my biopsy results next Wednesday. The consultant has booked me in for an MRI which should be next week at some point. 

Keeping my fingers crossed  
 

Hi so sorry to jump on this post, 

I have concerns and have been going back and forth with my doctors for the last couple of years. It all started when I started the mini pill, after a few months of being on it or even a year maybe I noticed some bleeding after sex, so pink in my discharge etc. I was coming up to for me next smear, but my doctor referred me to gyn for a smear and pelvic exam, this was May 2020 ish. The results come back fine and the gyn agreed with my doctor that is was probably just the pill. However over time my periods started happening (I don't normally have them on the mini pill), but they were kinda regular and mainly spotting so doctor want worried, I had been having hot flushes and doctor had just before all this diagnosed me with anxiety. More and more things started to happen, like discharge (not had this since I was younger) periods were lasting weeks longest being 19days. Again doctor not worried as smear was fine and put it down to perimenopause (I'm only 41, was only 39 as smear). I got married July 2021 and so we decided to go off the pill to see what my periods were like then, just so we had something else to go to the doctor with. My hot flushes calmed loads, but again on the run up to a period my vagina will smell, itch, hurt and sting like hell, I spot for days then the period starts for a few days then I spot for days (lasting 15-19 days a month and then it all starts again. My periods not heavier, cycle not regular and painful, and bad pain in my right thigh, me and husband were so confused. He agrees with the doctors I have had all the tests so nothing is wrong, but I went back. They sent me for a internal ultrasound which was normal, I was also told by them they maybe I should have a smear as this won't show CC, so once I had the results in writing I contacted my doctor, she advised that my hormone bloods were fine, my smear was fine, the ultrasound was fine, so she doesn't think it's cancer and she now doesn't think I'm peri she now thinks it's endometriosis and said to start on the coil or pill again to help with the pain and bleeding. So I have gone back on the mini pill until I get my appointment, so January I had a few days of spotting with one or two days bleeding then nothing until 24th feb and I haven't stopped spotting/bleeding since. I called the doctor again and spoke with a different one this time, who basically advised I go private which I can't afford to as she said the wait for gyn is long. She has however referred me. 
 

sorry that was long but im just so confused, they just keep saying it's just my body and just how it is but then I read your comments and I panic. I get pain in my right thigh and lower back mainly left side, but the last week or so it's been okay. I put it down to at its worse on the run up to bleeding. 
 

do you think I should worry/maybe look and see if family can help pay for private appointment. 
 

thank you xx 

Hi so sorry to jump on this post, 

I have concerns and have been going back and forth with my doctors for the last couple of years. It all started when I started the mini pill, after a few months of being on it or even a year maybe I noticed some bleeding after sex, so pink in my discharge etc. I was coming up to for me next smear, but my doctor referred me to gyn for a smear and pelvic exam, this was May 2020 ish. The results come back fine and the gyn agreed with my doctor that is was probably just the pill. However over time my periods started happening (I don't normally have them on the mini pill), but they were kinda regular and mainly spotting so doctor want worried, I had been having hot flushes and doctor had just before all this diagnosed me with anxiety. More and more things started to happen, like discharge (not had this since I was younger) periods were lasting weeks longest being 19days. Again doctor not worried as smear was fine and put it down to perimenopause (I'm only 41, was only 39 as smear). I got married July 2021 and so we decided to go off the pill to see what my periods were like then, just so we had something else to go to the doctor with. My hot flushes calmed loads, but again on the run up to a period my vagina will smell, itch, hurt and sting like hell, I spot for days then the period starts for a few days then I spot for days (lasting 15-19 days a month and then it all starts again. My periods not heavier, cycle not regular and painful, and bad pain in my right thigh, me and husband were so confused. He agrees with the doctors I have had all the tests so nothing is wrong, but I went back. They sent me for a internal ultrasound which was normal, I was also told by them they maybe I should have a smear as this won't show CC, so once I had the results in writing I contacted my doctor, she advised that my hormone bloods were fine, my smear was fine, the ultrasound was fine, so she doesn't think it's cancer and she now doesn't think I'm peri she now thinks it's endometriosis and said to start on the coil or pill again to help with the pain and bleeding. So I have gone back on the mini pill until I get my appointment, so January I had a few days of spotting with one or two days bleeding then nothing until 24th feb and I haven't stopped spotting/bleeding since. I called the doctor again and spoke with a different one this time, who basically advised I go private which I can't afford to as she said the wait for gyn is long. She has however referred me. 
 

sorry that was long but im just so confused, they just keep saying it's just my body and just how it is but then I read your comments and I panic. I get pain in my right thigh and lower back mainly left side, but the last week or so it's been okay. I put it down to at its worse on the run up to bleeding. 
 

do you think I should worry/maybe look and see if family can help pay for private appointment. 
 

thank you xx 

Hi beau

Did your doctor not refer you on the 2 week pathway? If not, then I imagine there will be a long wait to be seen.

You are obviously really concerned about your symptoms, so I would say it’s worth pursuing. Tests are not always 100% guarantee that there is nothing wrong, but with cervical cancer you can’t rely on a smear or an ultrasound. Not that I’m saying I think you have cervical cancer! It might well be something like endometriosis or something else. 

If it were me, I would check how long the nhs referral is likely to take, and if it’s a long time then I would go private for peace of mind in terms of getting a diagnosis of your symptoms. Good luck-hope all will be well. x

Thank you for reply so quick. 
 

The doctor asked if I had private healthcare, she hasn't done a 2 week referral and said the waiting time is long. I get clots in the blood sometimes and streaks of dark blood, and when I had a more of a bleed I pee and it looks like my pee is blood in it (but this is normal for me). 
I just worry as we kept thinking oh it's okay the doctors aren't worried, but then I read what you have all done through and I worry. I just want confirmed answers, surely this isn't normal and okay for women to bleed most of the month, I bloat loads now as well on the run up to a period, but then I said a run up I have no idea now really. Can I call my local hospital and find ont the waiting list for gyn? 
 

Thank you for your advice, I hope you are keeping well x 

Yes, you can call and check on likely waiting times. It is likely to be long because your doctor doesn’t suspect cancer. 

It frankly isn’t normal to bleed so much, and in my opinion and fro my what I know after nearly 4 years of speaking to lots of women, doctors are too quick to fob us off by saying it’s normal.

Hopefully you have something that is not cancer of any sort and can be easily resolved, but if I were you I would borrow the money if you need to to see a private gynaecologist and be thoroughly checked for all possibilities. I can’t go back in time, but if I could I would have been far more proactive about my own health and might have avoided cancer. No doctors were at fault in my case, just me, and there’s no point in me wishing I had done things differently now, but you need answers for your symptoms and reassurance that this is nothing serious. x

I just checked on their website and it's at least a 44 week wait ‍♀️ I can't see why the doctor didn't do it as a 2 week one, as even she said I shouldn't have to just keep waiting and bleeding without answers, I will be so angry if it turns out to be the worst as this could of been prevented sooner. Everyone keeps telling me it's nothing, it was something the doctors would be worried and would be rushing things. I just want to know what it is, as I said to my friends and family if this was you would you honestly just leave it and be happy with spotting most of the month and not knowing why ‍♀️
Also worrying as when it's that time of the month, as I think it's stopping I have a bowel movement and the blood starts again. I never mentioned this as just thought nothing of it, but just seen a post about it and now I'm freaking out. 

will call a private hospital tomorrow to get quotes 

thank you xx 
 

The doctors need to follow set guidelines when making an urgent referral, so that the cases they consider may be cancer or are urgent get seen quicker. As your doctor doesn’t suspect cancer, you are unfortunately not considered urgent but that wait is very long.

I hope you get on well with your calls re private healthcare and can get something organised. xx

Hi beau, I'm sorry to hear you've had such an ordeal. It's awful when doctors don't listen to us or take us seriously. We know our own bodies and when something is not right. Have you been to colposcopy for cervical biopsies? I would recommend really pushing for that, even if you have been already as they do miss things sometimes. It's really reassuring to hear your ultrasound was clear though. There was an area 34mm at its widest point on mine, which is why I finally got a 2 week urgent referral.

It does sound like you could possibly have endometriosis. Unfortunately it's not the easiest of things to get diagnosed. The only was to get a definitive answer is laparoscopy. I was referred for suspected endo last year, but was told the waiting times in my area are 49 weeks. I'm just so relieved to have gotten my new gp or I likely would never have gotten an ultrasound and still be none the wiser as to whats wrong.

Keep pushing your doctors. Don't let it go. I work with someone who paid for private scans (she has previously been diagnosed with fibroids so doctors are not interested) and they mixed up her results so she is currently waiting to have them done again. So don't be too quick to spend money, especially if you can't really cant afford too.

I really do hope you get some answers soon. There's nothing worse than being stuck in limbo with doctors totally unwilling to help. Please do keep us posted on your progress. X

I will keep pushing as I just need an answer, fed up of bleeding all the time and bloating, thankfully the pain is eased by the pill but fed of just being left. 
So pleased you think it sounds like endometriosis, not that it's a great thing to live with but the thought of cancer scares me like it would anyone. I keep telling myself it can't be cancer of it was surely the doctors would be pushing for more and more tests, but they have all said they don't think it is. But if they don't then tell me what it is, as I have always been regular on my periods then out of the blue this happened xx