No more horror stories!

Hi there

 

I just wanted to talk about the amount of horror stories people put on the internet about the colposcopy/lletz treatment. I had an abnormal smear this year in may aged 25. I recently had to have the lletz procedure done and I am still waiting on results 3 weeks later.

 

I know the forum is about people giving other people advice etc but all I seem to read is negative things. For exmaple when I had my lletz procedure done I read loads of posts about how bad there next period was. I have just had mine and it was as normal as what it was before the lletz treatment. None of this "extremely painful" "heavy bleeding" of course I got concerned about it as I have suffered from mine in the past.

 

I just think instead of scaring people with all the bad experiences, people should put more positive things on here. I know everyone is different but still it worries a lot of people. 

 

I don't know if anyone agrees with me or not but it is just my personal opinion :)

Hi, 

First of all I want to say how pleased I am that you've had your lletz and that for you it has largely been a straightforward and reasonable trouble-free experience - that's really great and I am genuinely pleased that this has been your experience of this procedure. The fact that you are still waiting for your results after three weeks is (generally speaking) a good sign as well (typically you would have heard by now if there was any major problem or issue), so that is all brilliant news! :-) 

Obviously I don't know you, but you sound like a sensible person and therefore I am sure you will understand that not everyone's experience is the same. This can be for a number of different reasons, ranging from the way in which it is carried out, the individualities of each person's anatomy and the nature of the problem that has taken them to that procedure in the first place. Just as with most other medical procedures, there is not one, uniform experience that everyone has. A lot of people have a reasonably straightforward experience, but some people don't, and a lot of people are somewhere in between. This is just because everyone is different, that's all. You're right that this forum is about advice, but more than that I think it about providing support. Sometimes women come onto this site and they are really very distressed, frightened and vulnerable. Whilst I completely understand that you may have felt unnecessarily anxious because you read things that in the end, did not turn out to apply to you, I think it's important to understand that these are not 'horror stories' but actually the experiences of women who are often feeling very vulnerable and alone. Just as it's important that you are able to come onto this site, ask questions and get support - and I'm really glad you've been able to do that - it's important that other women are able to as well, even if they are experiencing things in a different way to the way you have experienced them. Because after all, we are all different! :-)

I'm going to give you an example from me, because I think it might help: sometimes on this site I will see a post from someone who has had a recurrence of cervical cancer. Sometimes the symptoms that have resulted in the recurrence being diagnosed might be physical symptoms that I happen to be experiencing at the time. This will scare me because I will immediately think that maybe I am getting those symptoms because I've got a recurrence. Now, this can be scary for me, and so far the fact that I've been going through the same symtoms has not resulted in me finding out I've got cancer again, but the fact that I might find those posts challenging for me personally, and the fact that I might find them upsetting and worrying, does not mean that those women should not post those things. I do not believe that the intention behind posts on this site is to scare people, and actually I think it's really really important that women who are going through difficulties and often don't have anyone close to them who they feel they can talk to about what they're going through, feel able to come onto this forum and talk openly about what they're going through and how they are feeling about that. Everyone deserves support and understanding and after all, we are all responsible for our own feelings, so it is not up to the other women on this site to censor themselves on the offchance that it might worry me. My feelings are up to me, not anyone else. 

I hope all that helps in some way. I'm glad you've found this site which, after all, is a great source of support for all sorts of women going through all kinds of gynaecological experiences. 

Much love, 

Annabel. x

 

I agree with annabel entirely - many of the posts regarding their lletz treatment, for example, are from women who are genuinely concerned that their symptoms are worrying them, and are seeking advise as to whether what they are experiencing is "right" or "normal". Usually the posts that follow will be from a variety of women who then agree, their symptoms were the same, or disagree that actually they didnt "suffer" any problems at all.

Before I had my colopscopy I was extremely nervous about the procedure and posting here about my fears helped because those women who replied offered a variety of different views. I appreciated these views, whether good or bad, as it gave me a balanced view that I would not otherwise have.

 

Having said that my colposcopy procedure was, for ME, extremely traumatic and distressing, but this is because I have past issues that are not usual, or "normal", to most women. I therefore decided that, rather than writing up my experience here, and frightening the life out of women who have never had one before and maybe feeling nervous, I've decided to keep my experience to myself. I knew it would not be useful to the site here to share it. I did censor my feelings, fears and experience because quite simply I felt it was the right thng to do.

Its a judgement call; most women using this site are going through situations, feelings, emotions and procedures completely alien to them. To be able to find "common ground" with another women feeling the same way is comforting. You dont feel isolated.

I dont think anyone genuinely sets out to scaremonger, just to find out if how they are feeling is general or normal.

I read through many posts n threads here - some that relate to my circumstances and some that dont and I have to say that all the replies seem to be very balanced and mixed.

Hope that helps

Lily x

Hi there, 

I'm really glad that the Lletz procedure went well for you, and hope you get your results soon. 

 

I do agree with both Annabel and Lily, and speak from experience. I had two Lletz rocedures and a large cone biopsy, and unfortunately for me did have some problems with infections, adhesions and stenosis following these. I was unlucky, and am sure that this is not the experience for most women. However, becuase it's not the experience of most women, there is not a huge amount of information available to find, and so this forum has been a godsend for me, to be able to search through, see what others have experienced and asked questions when I want to. 

 

I must admit, I haven't posted a lot on here, and am guilty of not posting positive news when I had this - and there has been a lot of that too. I was lucky in that I avoided a hysterectomy, chemo, radiation - all EXTREMELY good news 

I have also just recently had a very nasty recurrence scare, fortunately my results came back that my problems were not being caused by cancer. But, during those weeks of waiting, I spent a lot of time on here, and even though sometimes the info was a little scary, it did actually help me prepare for what I might be facing. 

I think the problem is, women just don;t post on here as much when it's good news - we need the forum when we are worried, scared and experiencing symptoms. 

I hope everything continues to go really well for you. 

Morning,

I am glad to wake up to these responses as I tried to write a post twice last night and each time erased it as I was not sure how to respond exactly.

annabel, as usual, has hit the nail on the head, as have the other two ladies. These are not horror stories, they are people stories and everyone is different.

i was lucky to have had a relatively easy colposcopy and LLETZ experience and have written this on here many times to frightened ladies who were asking for advice. I know many people have a bad time though and come on here for comfort and support by sharing their stories. It is really important that people can come on here, write what they are feeling and ask for advice/support. Some ladies feel extremely lost and scared and this website is fantastic at easing worries by sharing them.

as you can see, most ladies posts stop at the colposcopy stage and never have to go through to the cancer stage which is wonderful. But the worry whilst going through all the waiting for appointments and results is horrible, horrific for some ladies, so it is important they can be heard on here, no matter how badly they are feeling. The procedure can be extremely dramatic for some ladies and the pain afterwards very real. They need to have a place to come to ask others what is "normal" and have others had the same experiences to ease their minds as they may not know anyone else in their lives who have gone through it all.

im so pleased that everything has gone well for you :-) not everyone is so lucky though.

Thank you for all of your replies and I am sorry maybe I jumped to conclusions a bit before writing my post. Yes I understand that everyone is different and that not everyone has had a different experience.

I think maybe because because I have read a lot of negative things. But then again like you have said and I should have understood is that everyone is different.

 

Sorry if I have upset anyone it wan't my intentions. Still no letter about my Lletz results :(

Didn't think u did mean too xxx that's the problem with a few written words on a screen, we don't always get across what we really mean.

fingers crossed for ur results

Hi

Just to add..... I think a lot of us have highs and lows on this journey we didn't want to take:(

Most certainly when i have felt low or needed answers i have looked for support on here and ALWAYS received positive replies even in some really bad times....But equally I have posted positive milestones and info  and answered posts i feel i can contribute to to help others beginning their diagnosis or treatment.

I think Annabel and others are so spot on  in saying we are all different and react in our own way. There are no right s and wrong here we just cope in our own ways coz we have to.

Glad to hear your treatment has gone well and best wishes for the future

Kath x

 

 

 

Please don't worry - we are just discussing things, and that is absolutely fine. The nature of this site means that subject-matter tends to be emotive, and things can feel tricky sometimes. But that's ok, and I want to reassure you that if you need any support and/or advice regarding the cervical issues you're going through, this is a good place for that :-)

On the subject of your results, obviously I can't say for certain, but what I would say is that the fact that you haven't heard anything so far is a good sign. Typically, if there is anything major to worry about, you'll be contacted within a fortnight. I expect you'll get a letter soon, and the likelihood is (because you haven't heard yet and because this is what happens for the vast majorty of people who go through this procedure) that the lletz will have dealt with the abnormalities and that will be that. I do understand that waiting can be difficult though!

Let us know when you do hear what your results are. 

Much love, Annabel. x

Hi there

i have to admit...I almost posted in response..and deleted immediately because it is a very emotive subject and so very close to our hearts. Am so glad I didn't now I have seen your response...at the end of the day we are all entitled to have a say and regardless of how written words may come across, we can't judge how we each perceive how we all feel. What makes me smile is the way in which each of the ladies above responded...in a kind and unjudgement way very typical of this site I have to say and very different to other forms of social media. It warms my heart especially as so many of you are going through very difficult ordeals. I love this very supportive and informative site...and despite what happens with my results I will continue to support it and do whatever I can to raise awareness and money to help out xxx