Hey guys
Just to jump right in and explain my situation,
I'm 35 with 4 kids & married.
May 1st I had my routine smear test.
My result letter arrived in the post
Saying I had HSV and they found cell changes to some of the cells in my cervix called high grade dyskaryosis in almost all cases these cell changes are not found to be cancer, but would like me to go for a colposcopy.
1 day later the hospital rang me confirming an appointment for my colposcopy for 2 days time. My emotions had just rollercoatered in those 2 days. My husband, god love him was supportive but just batting it off like... look the letter says " in most cases these changes are not found to be cancer" your be alright...
and all I could think was but my cervix has changes... why is it changing if its nothing bad?...
Anyway went to my colposcopy appointment, as I'm there hanging all out the gynecologist is muttering something about low grade and they probably won't do anything but she'll take a biopsy.. "sharp scratch" like whoa.. thats alot of information and not alot of time to process.. I know she maybe does this in her sleep but its all very new to me.. low grade what?.. im thinking in my head.. along with dont cry don't cry.. Next thing shes collected her sample and gone leaving me with two very lovely nurses who explained that I would receive my results in 4 weeks by letter... leaving the exam room i see my husbands face through a glass window and start to tear up. Which I know probably worried him to death but its like I have no control over the water works lately.. (don't cry don't cry) mantra I repeat in my head isn't working..anyway today is 5 days later.. so still waiting results.
In my head and my heart i believe I'm going to get a bad results.. and my emotions are just all over the place. The only people who know are my mum and husband.
my oldest child is 18 and I keep tearing up thinking about telling him, How it would hurt his heart. I want to delay telling the kids anything for as long as possible (ignorance is bliss) I pray for good news, but i feel like, i just know its not coming.
Has anyone had similar to me? Thanks for taking time to read xx
Hi Mum4and welcome to our group.
Oh my goodness, I can see how panicked you are feeling with everything you’ve written here, but please take a deep breath and try to be calm and I’ll see if I can help give you some reassurance.
First of all, is it HSV and definitely not HPV you’ve been told you have? The herpes simplex virus and the human papilloma virus are different things. Sorry to ask, but just want to be clear on this. I don’t have knowledge of HSV but the smear is checking for the HPV virus as the initial check, as this is the cause of abnormal cells. I wasn’t aware of checks for HSV from a smear.
High grade dyskariosis is NOT cancer. It is also called CIN3 and it is where the HPV virus has caused some abnormalities and changes to the cells of the cervix. CIN, or dyskariosis has 3 levels to describe the level of cell abnormality-low, moderate or severe, and the biopsy is taken to confirm which level you have as this is the definitive way to know and to decide where treatment is needed or not. No level of CIN is cancer, and the point of the smear/screening test is to pick up any abnormalities before the cells change further. Even with CIN3 it does not mean that these cells would EVER become cancer.
Having an abnormal smear and some level of CIN is a hugely common result for many women, and is not an indicator that you would definitely ever get cervical cancer. For low level CIN, there might be a watch and wait approach as these cells can regress and return to normal if the body can suppress the virus. For more severe cell changes the cells will usually be removed by a process called a LLETZ where you have a heated wire inserted to remove them. This is a simple procedure carried out in clinic with a local anaesthetic, and doesn’t take long.
If you need this treatment, it is followed by another smear in 6 months called a test of cure to make sure all the abnormal cells have been removed, and this has a high success rate.
There can be a discrepancy between results of a smear and a colposcopy, with the colposcopy being a much more detailed examination and the biopsy providing definitive results but it sounds like the doctor may suspect low grade changes only from what she has seen. It is possible for there to be more that one type of CIN found, but they are all simply abnormal cells and not cancer. If you are getting a letter with results, that would suggest they expect some level of CIN. A cancer diagnosis would not be given by letter.
Personally, I wouldn’t see the need to tell your kids anything about this, as it is an easily treatable condition which is so common and could worry them unnecessarily for no good reason. Having treatment for abnormal cells doesn’t require a hospital admission, and doesn’t make you unwell-may some minor cramping and a little blood loss, but that’s it.
I appreciate that you are very concerned and your anxiety is sky high, but unless you have a cancer diagnosis, there is really no need to panic about a dyskariosis diagnosis. Easier said than done, I know, especially if you have been given little information.
Try not to let this overwhelm you as you wait for your results, and keep us posted. There’s always some around to try to help you through, and we have a lovely group of supportive women here. Please feel free to ask any questions or use the group to discuss your fears and worries-we are here to help. You say you know it will be bad news, but actually you don’t know yet so it just will add to your anxiety to think of worst case scenarios at this point. I hope you can relax a little more now, and that I have been able to reduce your fears, even if just a little.
Sarah xx
I’m so pleased you feel a bit better now. One of the main issues in going through any of this stuff is medical staff assuming we know what they’re talking about when we have no idea. They do this every day but it’s new for us and scary. Before I had cancer I knew next to nothing about any of this, but nearly 4 years on, I’ve gathered a lot of knowledge and personal experience, so I’m glad I could help a bit.
Hope you can relax a bit and enjoy the holiday weekend!
Sarah xx
Hi Mum4
I was initially diagnosed in 2018, but haven’t been having treatment all this time. I’m doing well now, thank you-my story is in my profile if you click on my name.
No plans here to have any parties, but just going to enjoy the weekend and the extra holiday and hope for some sun to sit in the garden!
Sarah xx
