GP Callback

Hi Aimee

You will read that CIN1 does not cause any symptoms, but I could tell you that many women would disagree with that, and it’s different for everyone. It is actually quite common for results to come back with a different conclusion, so the biopsy may well come back with something different. But even so, any level of CIN, from 1-3 is not cancer. But the biopsy result is the one to focus on, not the opinion of the colposcopist. 

I don’t have any comparable experience I’m afraid as I went immediately to a cancer diagnosis and missed out the CIN stage, but I’m sure there will be other ladies who been through this. My issue would be that not everything can be seen with the naked eye, no matter how experienced tthe person is. 

But all you can do now is hang fire and wait for the biopsy result to see what the next steps might be. I hope the wait isn’t too long- it’s very stressful for you. 

Sarah xx

Hi, thank you. I found out more from my own GP via the letter she received from the colopscopist than I did at my appointment Tuesday ! I agree, the biopsy results will confirm what’s what. I start my placement for my final year at uni on Monday so I’ll be kept busy and my mind won’t be doing a million miles per hour. Thank you all for your support & advice it means a lot at this stressful time. I will keep you all updated 

Aimee xx

Good luck with your placement starting Aimee-that should keep you occupied, and your final uni year will be a very busy time. 

One of the problems with not getting a lot of information, or being treated the way you were at your appointment, is that it just makes us worry more and imagine all sorts. Things are rarely as bad as we might imagine, but all the same you deserved a better appointment. 

However, it does seem like your gp is listening, and keeping you posted, which is good! 

Sarah xx

Hi ladies sorry I’m here again. Had a nightmare the last 2 days with pain & now passing large clots. I received a letter following my appointment at colposcopy today stating on examination CIN1 at most ( this is from the person that said “I certainly wouldn’t think you would have cervical cancer at your age” (38) waiting biopsy results ! I have now found out NO cervical biopsy was taken only pipelle, which is the endometrial lining ! Gynae don’t want to know and are reinforcing “keep on top of your pain relief” , coincidentally the said pain relief doesn’t help ! I’ve joined the womb cancer forum now too for some additional advice as I’m not sure where to be or who to talk to . I honestly can’t deal with the pain much more.  I hope you are all well today

Aimee xx

Oh Aimee....this is just not right. You can most certainly have cervical cancer at a much younger age than you are. I did wonder if she’d actually taken cervical biopsies because it didn’t sound like it from your previous post. With cervical biopsies you would see what they had taken and popped in a container to send to the lab. Maybe you have CIN1, but your symptoms seem to indicate something else. Not necessarily cervical cancer though. 

Keeping on top of pain relief is not an answer to ongoing symptoms that you describe. Large clots and bad pain need to get an answer. It may be that the issue is not with your cervix, and is with your womb, so maybe the lovely ladies in the womb forum might have some suggestions on next steps. 

The pipelle biopsy might give an indication if there is anything going on with your womb, but they should have told you this is what was being done. 

You are entitled to seek a second opinion if you feel that would be helpful? I’m so sorry you’re going through so much and not getting the answers you need. Please don’t apologise for coming in here to say what’s happening-we might not be able to help but we are here to listen and try to offer whatever support we can based on our own experience.. xx

Thank you for your reply. The biopsies she took were very uncomfortable all she said was they were taken to see if anything was going on “further up”!! I did see what looked like pellet sized samples in a pot with liquid in. I would have “thought” in my opinion to rule out cancer a biopsy should have been taken from the cervix ? CIN1 “at most” … would this be left as a definitive diagnosis  or does anyone know if they actually diagnose CIN1 as such any other way ? I have been left very upset and disgusted if I’m honest with every aspect of this 

Aimee xx

Normally, as I understand the process, is they would put the liquid on your cervix to identify any areas of abnormal cells. Then they would take a biopsy from any areas which have been highlighted, which would be sent for analysis to determine the level of abnormality. This is the way to determine the level of CIN- low, moderate or severe. You cannot assume a level of CIN, because someone can have more than one level of CIN on the cervix at the same time. I stress I am not a medic, and I had a tumour visible to the naked eye, but I have spoken to many women about the whole diagnostic process.

”Further up” to me means the cervical canal. Not every type of cervical cancer is caused by HPV, and not every type of cervical cancer goes through a precancerous(CIN) stage. 

You need to keep advocating for yourself, and not settle for a CIN1 diagnosis with all your symptoms. xx

Thanks sarahH21, I would have thought if there was an abnormality of cells visible to the naked eye then surely a biopsy should be taken to confirm the CIN level ! I had biopsies taken before colposcopy as she wasn’t going to do colposcopy until I mentioned it !! The GP said I should have results next week, however after the experience so far I’m not too optimistic!! Aimee xx

I hope your results are back next week Aimee and you can move on from there. It’s been a very disappointing experience all round for you so far, so I hope you do get the answers you need and a solution. xx

Hi, had a call from the gynaecologist today basically stating I’m having ablation done and there’s nothing more he can do. I understand I have heavy periods but it’s the unexplained constant pain & bleeding, alongside postcoital bleeding that is my main concern NOT heavy periods !! He said that “mild changes seen, CIN1 at most” is acceptable enough and does not require a biopsy to give a more accurate diagnosis. He advised to speak to my GP for stronger pain relief and I will receive an appointment for surgery ? No timeframe due to covid. He didn’t seem concerned about heavy bleeding and large clots for the last 2 weeks constant, and also said as my last smear 2 years ago Jan was normal I should be ok until my next in Jan 2023. I feel like I’m living a bit of a nightmare if I’m honest, I’m so frustrated it seems like a case of “you’re down for surgery, we’re solving your problem”, I’m grateful if it helps but I would like to know why this is happening in the first  place. 

Aimee xx