Symptoms & colposcopy on 23rd

Hi everyone,

This is my first post so apologies if I've put it in the wrong place! And I'm sorry in advance if it ends up a long post!

My situation at the moment is that I have been experiencing symptoms for around 9 months now but in the past two or three months it has got progressively worse. A bit of background I'm already under a gynae consultant as I've suffered with endometriosis for around 7 years and had various surgeries etc for that. I was put on the depo injection last year to help with my endo after exhausting a lot of options. In May this year I had a bleed for around 7 weeks straight and went to gp who gave me some tablets to stop the bleeding, they worked then as soon as I stopped taking them it started again. I went back and explained to the doctor that bleeding outside of periods is not normal for me at all so can she find out what's going on. 

She did some swabs (all clear) then suggested I have the depo every 8 weeks and that would stop it. I did as I was told but it still didn't work. Then I started suffering with extreme pelvic pain and the bleeding (although not constant but every couple of weeks or so) got more frequent. In the last few months I have started bleeding after intercourse, feel absolutely exhausted, have pain in my legs, awful back pain, constipation all the time, frequently need to go for a wee even through the night, my lower abdomen is swollen and tbh I generally don't feel well at all. Sounds strange but I really feel like something is definately not right at all.

I have a scheduled appt with my consultant on the 23rd and I emailed him yesterday to tell him all of my symptoms since I saw him last and he suggested we do a colposcopy on the day. 

I had a clear smear nearly 18 months ago.

So really my question is, has anyone been diagnosed with cc through just symptoms then colposcopy or is it always after abnormal smear results?

So sorry to anyone reading for such a long post,

Any advice would be much appreciated and thanks for reading

 

Xxx

Hi Shell,

Welcome to the forum and please do not apologise. Your post is perfect :-)

I was diagnosed with cc from just symptoms and a quick peek using a speculum. You can read about it in my post "My Big Fat Greek Hysterectomy" I'd put a link to it here but I'm obviously a bit technologically challenged. But if you are signed in and click on my name you'll get there. Of course there were heaps of tests and biopsies to confirm it, but the process does not necessarily begin with a smear test.

Having said all of that, this does NOT mean that you are going to be diagnosed with cc at your appointment on 23rd. Do your very best to put it out of your mind and try to enjoy the next couple of weeks with all the Christmas festivities. Everyone here knows exactly how scary it can be waiting and not knowing but please try, you don't have too long to wait for your appointment and it will be over and done with before Christmas which is a great thing.

Be lucky

Tivoli

Hi Tivoli,

 

Thankyou so much for your reply and kind words :-)

I read your post it is wonderfully written and very humorous for such a serious subject! You have a real talent for writing methinks!

Gosh it sounds like you went through an awful lot especially as you didn't have much time to prepare at all.

Yes you are right I am trying my best not to think about it too much but I'm finding it difficult as I'm feeling so unwell and exhausted at the moment. When they do the colposcopy will they be able to tell me on the day if something doesn't look right do you know? 

I don't have a lot of faith in doctors and hospitals from my own experience as I've had a lot of things go wrong, get missed, get lost etc and its only when I have questioned them that they sort it out so I think in the back of my mind I'm kinda thinking that they're just going to say "yes it all looks fine" and give me no explaination for my symptoms. I mean for example during routine surgery 5 years ago they dropped a screw inside me by mistake and it was only when I was healing up a week later that it popped through and I had to pull it out of my wound (sorry for gross TMI lol!) And even then they tried to tell me that it wasn't off the equipment from my surgery until they did an investigation and it turned out the people who clean the apparatus after operations noticed it was missing and just replaced it, not bothering to tell anyone and get me xrayed as I was still upstairs on the ward!!! Sorry to anyone reading this but I think I'm just quite unlucky with things! 

Ive done a lot of googling (which is sometimes not a good thing) and I was thinking that if my smear was clear but I do have cc now then would it be the one that is higher up in the cervix that the smear test would pick up anyway? And if that's the case can they see that high up with the colpscopy?

Sorry if that question is silly and has been answered before,

Thankyou again,

 

Xxx

An adenocarcincoma is the word I was looking for I think

 

Xxx

Hi I'm new to this too I had colp and been told they have found an ectopy coarse mosaicism but have no idea what this means!!! I am awaiting biopsi results can anybody help???

Hi Chelseygreg

Ectopy Coarse Mosaicism - what lovely words! Absolutely not a clue what they mean I'm sorry to say. Suggest you call your doctor for a decent explanation as Google can send you into a flat spin. I can't help feeling that it sounds like an obscure Buddhist splinter-group but that would just be silly!

Hi again Shell

Thanks for the compliment! :-) Yup, adenocarcinoma is what I had. I'm awfully sorry to hear about your loose screw, not awfully confidence-building that one is it. I'm sorry but I cannot tell you very much about what happens in Britain and I am sorry that you are currently feeling exhausted and unwell. If you are at home I recommend you curl up with something hilarious to read, if you're at work, hmm, well, do your best to keep busy and cheerful. You have only eleven days to wait now, so not too long.

Be lucky

Tivoli

Hi Tivoli,

 

Thanks, I was known jokingly at the hospital as "the lady with the screw loose" for ages!

Yeah I am at home so trying to keep busy, that's a good thought actually I might watch some comedy DVDs or something! Yes actually its not long now, I am counting down the days.

I know a lot of people have said so but its amazing how much support is here, I've read this forum for the past few weeks and finally plucked up the courage to post and now its even more comforting to have such kind words from others.

Thankyou very much 

Will post again after colposcopy, 

Fingers crossed,

Xxx

Ps definitely look into writing if you're not already, you have a flair! Even just your story just to raise awareness xx

Hi all,

 

Went to my gynae appt today. All prepared for the colposcopy and the consultant said actually you won't be having one today as the lady who does them is away..... So I'm like OK well what do you think is going on with me then (gave him a list of my symptoms and a diary of when I'd been bleeding over the past few months) and he said that he thinks its the depo injection that's causing the irregular bleeding.

I asked him what about my other symptoms and that I was worried about it being cc and he said its not cc as you've had a clear smear 18 months ago.

So the solution for me at the moment is to get sterilised in 6 weeks time as my family is complete and this will stop me requiring the injection or any contraception and the bleeding will go back to just normal periods.

To be honest I left the room in a daze as I was mentally prepared for the colposcopy, was almost convinced they were going to find something and I end up walking out with a pre op assessment appt in my hand. 

Should I just listen to my consultant and go along with what he thinks or do you think I need a second opinion?

I feel really deflated im sorry if that sounds stupid but its turned out completely different to how I expected and I still don't feel any the wiser if anything I'm even more confused :-(

 

Sorry for the rant,

Merry Christmas to all you wonderful ladies and wishing you a happy and healthy 2015

 

Xxx

Hi Shell,

I'm not surprised you're feeling deflated, you have been preparing yourself mentally for what could have turned out to be something of an onslaught and when you finally reach it you are turned away with a simple "The circus didn't come to town" What an anticlimax! You've got all that adrenaline and it has nowhere to go. Glad you didn't punch him on the nose though! ;-)

Certainly sterilisation resolved a heap of problems for me so go ahead with that if you have seriously come to that decision anyway, separately from the rest of the nonsense. But go back to your doctor and explain everything that has happened. If somebody somewhere thought that you should have a colposcopy then it isn't for somebody else to diagnose you from an 18-month old smear test result. Colposcopies aren't just done for fun (as far as I am aware).

Of course I really hope the guy was right and that you are fine and fit and healthy with nothing at all to worry about, but do please get a second opinion.

Happy Christmas!

Tivoli

Hi Tivoli,

 

Many thanks for your reply, hope you had a wonderful Christmas!

 

Yes you are totally right, that was exactly how I felt! I should've punched him in the nose though, would've got rid of the adrenaline lol!

To be honest I've considered sterilisation for a while anyway so for him to recommend it was fine with me. Do you mind me asking what problems it helped with you (don't mind if not), just that I can maybe start ticking some of my own issues off my list for afterwards? 

Yes I was considering having a chat with my gp just to see what she says (as I've recently started seeing a new one and she is not at all like more old one-(she was very dismissive, almost bored of what you say, can't wait to get you out the door etc, everything is IBS or that you smoke) so I'm gonna show her my emails between my consultant, then his suggestion of a colposcopy on the day, then when I get there he says ah well its not cc with your clear smear. Unreal.... Yes I'll have a chat with her and see if she thinks my symptoms warrant a colposcopy in the meantime and ask to see another consultant if that's the case.

In your opinion/experience do you think the depo could cause all these symptoms? The thing that's niggling me is that I've been on it years ago with NO issues whatsoever, it was brilliant,no bleeding whatsoever from the very first injection and then with my symptoms gradually worsening the last few months its just not sitting right with me for some reason. I don't know if I'm just being over cautious and that's what's making me think ask someone else, just don't wanna come across as some hypo when a gynae consultant has specifically said "it won't be cc". Sorry I could ramble back and forth with the what shall I dos when there are so many women on here fighting the real thing and I'm sat here complaining, I apologise :-( 

 

Hope you had a lovely Xmas and thanks again for your sound advice, it is much appreciated xxx

Hello again Shell,

Yes, I did have a lovely Christmas thank you, and I hope you did as well. I'm afraid I don't know the first thing about depo - sounds marvellous! I was on the mini pill for years and years and never had any issues with it. But they don't like you to stay on it forever and ever and so I started to use the cap. That was quite fun just for the novelty value but rather took the spontanaity out of proceedings. Then I went on to the coil which was OK but sometimes it would give me low back ache and my periods were definitely heavier with the coil. Throughout all of these I was forever getting either thrush or cystitis or both together. I don't remember any grief at all after having my tubes clipped until fibroids and general middle-agedness, so I suppose that must have been getting on for ten trouble-free years.

Hope that is of some use, and hope you get some sensible answers from your medical team.

Be lucky

Tivoli 

Hi Tivoli,

 

Yes I did have a nice Xmas thankyou :-)

I have tried many contraceptive pills over the years, was fine to start with then they started making me sick, as I say I had the depo with no issues years ago but this time not so great. Yes my consultant and doctor have both been pushing me to get the coil for ages now but I'm just not keen and have told them so but they still keep suggesting it, think that's why he's offered me sterilisation now. 

Gosh it must've been horrible with having those two on their own let alone at the same time bless you! Yes hopefully this will help me as I've been back and forth to gynae and this next op will be my tenth so I'm getting a bit fed up now (and only 29 so ever since I was 22!) 

Thankyou I will be ringing to speak to the doctor on Monday and hopefully will get some advice from her.

Thankyou again for taking the time to reply to me it means a lot xxx

 

You're more than welcome sweetheart!

It's nice to be asked! Yup, as far as I was concerned, Titanium clips are better than a copper coil but you do need to be absolutely sure you aren't likely to change your mind in the future, stepping backwards from that one cannot be guaranteed.

Best stop now, it's Saturday night and the wine is open - don't want to be reckless online! ;-)

Be lucky

Tivoli