Hello world! Well here goes! My journey is probably just at the beginning. I went for my routine smear in back in May (about 8 months late due to COVID). Fast forward to Tuesday and out of the blue I get a call asking me to attend local hospital the next day for colposcopy. I had no idea initially what they were on about as I hadn’t received my smear test results yet. I agreed to attend on the Thurs (today) for colposcopy and not a lot was discussed. Biopsy was taken. Came home to my results letter from smear - high risk HPV and changes to cells in cervix. I’m worried st*tless. Don’t know what this means for me. I have been reading others posts in the forum so thought I’d start my own and keep it regularly updated in case it helps others. Anyone been on the same position and everything came back fine? Scared about the urgency of it all? A bit of background about me - I’ve always suffered from pelvic pain. I was diagnosed with endometriosis 2 years ago. I started prostap last year at the beginning of lockdown then couldn’t get an appointment with gynaecology due to COVID so stopped getting injections in June. My symptoms cleared up with prostap, however, come October I had this new pain, in the middle of my abdomen, made worse with bowel movements, bleeding, spotting, watery discharge? Anyone else experience the same?
I found out in 2013 that I have CIN3 (high grade) changes like yourself plus HPV. I had to have several operations including LEEP procedure and I was then given the all clear after two smears, 6 months apart were negative for any precancerous cells. The relief was immense at hearing that good news and the thought of getting the good news eventually, helped me stay a bit more positive in the months while undergoing treatment, though I did still have many low periods.
Since 2015 I have been having yearly smear tests which I think is standard procedure after being given the all clear.
I know it is a very scary time but staying as positive as possible helped and having the support of my family really helped too. The man I married in 2014 was with me pretty much from the beginning since getting the bad news in 2013 and he has never wavered in his support and had 2 good shoulders to cry on when I was feeling low and nervous.
If you need to ask anything then ask away even if you think your questions seem silly.
Hello Lizziem, thank you for taking time out to respond to me Glad to hear that you have been given the all clear. Must’ve been such a tough time for you and your family. It’s also nice to hear that your husband was such a rock for you.
My head is up my ar*e just now. I’m actually away for a week on a staycation with my hubby and 4 kids. Just can’t get all this out my head, I won’t lie I’ve been to some pretty dark places in my mind the past few days. I’m praying that I don’t wait too long for my biopsy results. The thought of waiting weeks is killing me. Doesn’t help that I’m also in pain and realising that the pain could be something to do with all this.
Tbf I don’t even know what questions to ask anyone. Just don’t know where to start. I honestly wasn’t expecting this at all and I just feel numb and a bit sorry for myself.
Pretty poor internet connectivity where I am just now, which is probably a blessing in disguise as it’s preventing me from seeking advice from Dr Google. I know I shouldn’t do this but can’t seem to stop myself.
Off out tonight with my family. Time to dawn my war paint and put on a brave face Hopefully it’ll be a welcome distraction and I might feel
a bit more like me again.
I wanted to reply and offer my support because I’ve just been through similar to you. Unfortunately for me it’s a CC diagnosis and i’ll be starting chemo/radiotherapy soon.
But if you have any questions, please ask. I know it’s a scary wait, and google doesn’t help so please try and avoid it if you can. If it helps, I waited one week for a colposcopy and then another week for biopsy results. Wishing you all the best.
Joix, I’m sorry to hear of your CC diagnosis. Hope you are doing well given your current circumstances and that your treatment has started since you kindly wrote to me in the forum a few weeks ago. Thank you for offering your support, it means a lot Likewise if I can offer a shoulder of support to you, please feel free to use it!
I thought I would come back and give you all an update as I promised to keep this post updated in case anyone else found it of any help .
I’m still waiting for the results of my biopsy at this point (performed 4 weeks ago on Thurs). I’ve had to contact gynae a few times over the past few weeks ( I have endometriosis) and I’ve been informed that my biopsy results aren’t back, but also the consultant is also on annual leave and returns tomorrow. I’m praying I haven’t got too much longer to wait as the waiting is killing me.
I can honestly say the last few weeks I have been to hell and back. The waiting is torture. It’s so cruel that we have to wait so long to find out what’s going on.
Also when I think back on my smear test and colposcopy I find myself getting increasingly angry about the whole experience.
I’m the type of person who would rather be told straight what’s happening than have people skirt around the elephant in the room. When I think back to my smear test, it was only when I was about to leave (hand on the door handle, ready to leave) that the nurse told me that she had seen ectroption on my cervix but not to panic.
When I went for colposcopy, i hadn’t even received the results of my smear test. I had to push for the results from the consultant. When my colposcopy was performed, the ectroption wasn’t even mentioned. In fact, nothing was. The consultant only said he’d take a biopsy ‘to see what we are dealing with’. Biopsy was promptly taken and questions I was asking were ignored almost as if I was being some hysterical woman (which I wasn’t). I was given into trouble for not mentioning I had an IUD (wasn’t asked if I had one). Consultant mentioned I had a slight prolapse and suggested I self refer to physio (how mortifying).
When I tried talking to the nurse about the colposcopy, I was greeted again with no one actually answering the questions I was asking. But, instead greeted with a chorus of ‘it’s fine, it’s fine, you’ll be fine!’. I feel anything but ‘fine’.
Sorry for the rant Really needed to get it off my chest. I’ve been told 6-8 weeks for results. Honestly hope it’s not that long at all, and I find out sooner rather than later. This is like living hell. Xxx
Wow, what a time you’ve had. I’m so sorry you’re still waiting. I hope the 6-8 week wait means that they don’t suspect anything sinister. When my biopsy was done I was told it would be marked urgent as it looked like CC and would be back within 2 weeks, which it was.
I know how frustrating the waiting can be, I still have another 2 weeks to go until I start treatment if I was you I’d call them again tomorrow and see if you can get some answers. Take care
Update - finally, after a few calls to chase up I have my biopsy results after waiting 7 weeks and 2 days for them.
I received a very vague letter telling me that CIN was found (not the form, ie 1, 2 or 3) but that it wasn’t cancer and that I would require treatment (but which treatment I would need wasn’t mentioned). Attached was a letter with a hospital appointment for September (think it was the 14th).
I’m feeling very upset, angry and let down about the whole way this has been handled and also fearful for other women having to go through this process. Reading that others in this Forum have been waiting for months to even get seen at colposcopy is an utter scandal. The whole point of cervical screening is to detect cell changes at an early stage to prevent them becoming cancer in the future. I worry about how many women will be getting diagnosed with cervical cancer rather than abnormal cell changes due to all these delays.
I also worry that very little is being done to protect a patients mental health whilst they are going through all this. The endless weeks of waiting is torture and I did find my mind taking me off to some very dark places. I’m positive that mentally it’s going to take my mind a very long time to heal from this.
I’m going to pluck up the courage to call my consultants secretary to see if she can tell me what level of CIN they found and what treatment I require. Again I’ll keep this thread updated just in case some other poor soul finds it helpful.
So another week has passed and after a full week of calling colposcopy daily to see if someone could tell me what level of CIN I have and what treatment they have planned, I’m still none the wiser.
Apparently my consultant is back on tomorrow and they will chase this up but considering I was told every day last week someone would get back to me and didn’t, I’m not holding my breath.