After receiving an invitation for another regular smear test, I postponed it for a few weeks as I was busy with work (aren't we all!). Had the smear done and two weeks later, on June, 23, I received a letter. I am used to the process, however I wasn't used to what I read. My results were abnormal! I was thinking this must be a typo. But no, they had found high grade dyskariosis. Aha. Now the NHS try not to freak you out with this letter but state " Do not be alarmed". As a consequence I was very alarmed! Lots of googling and looking and alas - chances of cervical cancer. I spent most of this first day crying and being miserable. I called the nurse straight away to book in for acolposcopy. It took me three hours to get through to the colposcopy booking office. I got an appointment in three weeks' time. Three weeks! I went back to work the following days, staying very busy, but then called the nurse again a couple of days later trying to get an earlier appointment. If I have high grade severe chnages, surely I must be seen earlier, right? Also, NHS standard is to be seen within two weeks. That's what I told the nurse and she said I can try ringing back again to check whether there will be new appointments available due to cancellations.
In any case, I think she must have felt sorry for me given that I kept calling her so less than an hour later from the last call she called me back (even though this is not the policy under which they operate at that hospital - there apparently is no capacity to call individual patients back if someone cancels). However, that lady called me back and said she had just got a cancellation through and was wondering whether I'd like to be booked into that slot. Sure I would! Finally some humanity there. My picture of the NHS was somewhat restored at that point.
So one week (rather than three) from the letter telling me I had severe dyskariosis I went into the doctor's surgery. It was a Monday afternoon and I had spent the entire weekend pondering over Lletz treatments as these appear to be the most common not only in England, but in Germany, Austria, USA, Australia and New Zealand (gosh, I've done some research there!). So I was pretty sure I'd have treatment straight away and cancelled a number of appointments at work which I was supposed to have the following day.
On the day of the colposcopy, I called the nurse to ask her whether it's likely to have the treatment straight away. I want to know these things so I can mentally prepare. She said she didn't know and would talk to the nurse. The nurse came back and simply said all individuals are different and the doctor will determine on the day what is going to happen next. So I wasn't any smarter after that, however mentally still prepared for treatment. Had bought loads of painkillers and pads over the weekend because one must be prepared for such invasive treatment.
I took a taxi to the hospital with my partner (my car had conveniently broken down a few days after my high grade dyskariosis diagnosis). Went into the waiting room and I was obviously nervous. Two hours ago I had taken a couple of strong paracetamol. I'm suffering from terrible period pain so I thought this procedure might be quite tough on me. Ten minutes after arriving, the nurse called me in to the second waiting room. Partners or children or any other people are not allowed to accompany you in order to maintain the dignity and privacy of the other patients in that waiting room. So I was sitting there, getting increasingly more nervous, took another couple of paracetamols, just in case. A few minutes later the doctor appeared. A female. I was hoping for a male. I always tend to think men are more sympathetic as they cannot possibly imagine what it would be like for us women to go through women's biological processes. The doctor took me into a little room and talked to me about the colposcopy. I had quite a bit of knowledge by that stage and had read recent scientific papers across different countries and healthcare systems, as well as the official NHS guidelines in the case of possible cervical cancer. I told her. I also told her that I had miscarried one and a half years ago. She took a note of that and said "This will not influence anything". That's all she said. By that point and up until now this miscarriage had by far been the worst experience of my life and having additional problems in that area is absolutely terrifying. I was petrified.
The doctor drew me a picture of the cervix which was funny given I had seen all the pictures and videos online so I knew what to expect. In any case, I asked her whether I would have treatment on the day and she said no as they are not a see and treat clinic. So I told her I had been misinformed as the nurse had told me on the phone I may get treatment straight away. I ahve found and still do not find that the lack of information and understanding I was receiving from the NHS even after having explicitly and very directly asked for it is horrendous and makes the already terrifying experience so much worse! Sorry for this rant, but from what I have seen many patients treated in NHS settings for possible cervical cancer report exactly the same experience.
The doctor led me back to the "private" waiting are (you are basically sitting in the hallway with other women) and a nurse came who showed me the "changing room" on the other end of the wall by the waiting area. I was supposed to strip down my clothing from the waist down or wear one of those hospital gowns. I decided to keep on my dress given that those hospital gowns don't leave much to the imagination and I had purposefully put on a dress. Upon changing I came out, but the nurse had disappeared. So I was standing there half naked and did not know what was going on. Eventually, I found another nurse and asked her whether I should leave my clothes in the changing room and she told me to take them with me. What a massively dignifying experience! I was not only petrified because of what was about to happen to me but utterly embarrassed on top of that.
Finally, the other nurse came back and led me into the treatment room where the doctor was already waiting wearing a surgeon's outfil and gloves. Welcome to hell, I thought. So she asked me to take a seat on the lovely chair and spread my legs. She put the instrument in to widen the vaginal walls so she could have a good look at my cervix. In Germany, these instruments are being warmed up and some gel is used to makke the insertion less painful. Not here. She took her colposcope and checked out my cervix. Then she put the vinegar lotion in which smelled like when I'm preparing my salad dressings. To my absolute delight, she asked me whether I wanted to see my ccervix on the screen and of course I wanted to check out the extent of the damage. I knew what to look for and wanted to see for myself. So as you may know the vinegar solution turns the abnormal cells white and differentiates them very clearly form the healthy cells. I saw my donut-shaped cervix with the white layer of abnormal cells around the opening. The spread around the opening didn't look too bad, however the cells had spread up to the outer lining, which was a bit worrying. My doctor said that these were the mosaic cells I may have read about. She said the changes look more like moderate changes and it didn't look like cancer. Good news! Phew!
She said she'd like to take two biopsies. I said sure because obviously if they don't have cells from the lletz treatment they must get some other cells to send off for inspection. I wasn't too bothered about this. She was asking me whether I wanted an anesthetic, however said that most women find the anesthetic worse than the biopsies themselves, so I decided against it (remember I had taken all those super strong painkillers previously). I mentally prepared myself for the worst, but taking the biopsiesjust felt like a little pinch. I told her it's not too bad and I was pretty relieved at that stage. But then she went on to put some cream on the little wounds she had created, which was very uncomfortable and actually rather painful. At this stage they finally asked me for the first time whether I was alright. No, I'm not, is this a rhetorical question?! But I said yes. So it couldn't have been too bad as I didn't lose my good manners!
The doctor told me that I will have the results in writing in about four weeks' time. Four weeks, great. This was four weeks minus three days ago.
Overall, the whole colposcopy experience altogether was rather disillusioning. Your fears and humanity and dignity are not really taken into consideration and you are made to feel as if you are silly for worrying. I am sure these doctors and nurses see loads of women who are completely petrified, however, this is for a reason. Given that very few occasions are provided where you are in actual contact with doctors (mostly it's letters or receptionists), this experience should be improved significantly. I don't feel like there is someone I can turn to regarding this like a healthcare professional who wouldn't mind me calling them and asking them questions. Instead I am being left with the number to call the receptionist, who, if I'm lucky, can converse with the nurse, to tell me helpful things, such as: we don't have the capacity to inform you, we can't give you the results over the phone, etc., etc., etc. This is a petrifying time and it is made so much worse by the inadequate NHS context and the utter and complete lack of information which surely must be completely unethical. In the couple of information sheets I have received, at no time is the treatment explained. It is said that some treatment centres offer treatment straight away, however you are left completely in the dark as to what that treatment consists of. Not even after the colposcopy did I receive any information concerning potential treatment. So obviously you'd know that the abnormality won't go away simply by you taking some pills. No, instead they are likely to burn it out of you using an electrical wire. Groce, but true (sorry for my language). Pardon my French, but I am really unhappy about the care I have been provided so far. Apart from that one nurse who I buggered enough and who then kindly called me back to offer me an earlier appointment for the colposcopy, I am not happy. This probably has also got to do with the fact that I am frustrated and wondering why it has to be me who had to be diagnosed with severe cervical abnormalities. It's not my fault and it's also not the fault of the NHS. I am currently contemplating seeking a second opinion abroad where I know the doctors are likely to give you personalised treatment and to look after you as an individual, not just simply another women with some abnormal cells. The psychological and emotional aspects of high grade dyskariosis (and whatever diagnosis may come after that) are not adequately addressed, which is a shame. I understand that the NHS do not want to frighten their patients with letters that contain too much information. But you know what - I like to know what's going on with my body and my health and I am certain many women want the same thing! It seems a bit silly having to resort to the internet and do research yourself rather than being provided the relevant information by credible sources straight away, at least at the point you are directly asking for it.
My job offers me private healthcare. On the day I have received the high grade dyskariosis diganosis I called the insurers to ask about my options. They would treat me, however only if the NHS doesn't offer treatment within four weeks of the diagnosis. At that stage I was meant to have my colposcopy in three weeks, so my private healthcare wouldn't cover this. However, I might be lucky and have them cover treatment if I need it. The doctor said to me that given my age and the fact I haven't got children, she would not want to overtreat and to be honest, this made me respect her. I have read about the consequences of even relatively small treatments, such as lletz, and they can be pretty grim. Given that I have miscarried in the past, I am frightened about the increased risk for miscarriage, preter delivery, scarring and/or an incompetent cervix. But now what I think I must do is simply wait for the results of the biopsies. From what the doc said, I would assume they will come back as CIN2 or CINN3 and it will be quite likely I'll have to have some treatment.
If I can give any advice, I suggest women with the same problem talk to other women, possibly those who have had similar experiences. This is a very scary time and misery shared is misery halved. My partner is very supportive (bless him!), however at this stage I think he is a little reluctant to hearing me talking about my cervix all the time as well as the possibility of cancer. What you want to do is to talk to people who have a cervix (!) and possibly those that can understand you because they have hgone through something similar. I am grateful to all the women on this forum for sharing their experiences and offering their support. This has been an invaluable source of information and support and I would like to thank you all.
I am still waiting for my mum to come back from her holiday so I can tell her the news... (which is scary by itself. She has had a hysterectomy at the age of 45ish).
Thanks for reading this. x
