I want to echo what a lot of you have said, this forum has been incredible and I think you are all amazing. Being a women is hard work without all the added extras that seem to come with it.
Ill be honest, I’m not really sure where to start, but I feel like the process right now is on loop. I had my first successful screening at 29, after a very painful and awful few attempts by my GP practice nurse and being told I was overreacting I had an appointment with a locum nurse, who was incredible she noticed straight away things didn’t quite look right and referred me for a colposcopy- every smear I have had has been high risk HPV and abnormalities. I’ve now had 3 lletz with my last being October last year, when I went back for my test of cure in Feb the results came back as high HPV and abnormalities once more I was asked to come back April.
So fast forward to this appt, the nurse has trouble getting access to my cervix which made things slightly awkward, although both nurses were fantastic and made me feel like this was normal procedure. She told me she could see I still have HPV ( I’ve never been told this before prior to recieving a letter) and abnormalities after a little more awkward pulling and manovouring she then made an ohh kind of sound! And then asked could she take some biopsies further up, which was fine, she then proceeded to ask me if I have children- I do- two very lovely pre teens who drive me bonkers sometimes but I wouldn’t change them for the world, if I had plans for anymore and if I’d thought about other options (alarms bells ringing now!!) Although I highly doubt there is more going on, it’s slightly playing havoc with my mind- I was told that I will hear in approximately 3 weeks with my next steps.
She asked if I had any questions and my mind just went blank, so I politely said no, have a lovely day and smiled as I walked out the door, all whilst slightly screaming inside. Would it be too much too ask for a normal result. I’ve been so much in the last couple of years that the lady on the desk doesn’t even need to ask me my name anymore.
I feel awful writing this as I know there are other ladies who are dealing with different aspects, and here I am having a rant- but sometimes that’s all we need, just an outlet for a brief moment to then plant the smile back on your face and face the day ahead.
Sorry for the huge essay, if anyone has time to read I appreciate it so much and I just want to say your amazing keep telling yourself that because I don’t think us ladies do that enough .
Thank you for sharing your story; you have borne this all very bravely so far, but I suspect this will not be the end of it for you. If you have already had 3 x LLETZ and it turns out there are still abnormalities - which you suspect it does - they may well be considering a hysterectomy at this point in time. I can understand if that feels very extreme especially as you are young, but they can leave your ovaries so that you’re not plunged into menopause and - to be honest - better that than it leading to cancer later down the line.
You will see my back story that I had three procedures myself, and the final procedure was what they call a ‘knife cone biopsy’ - in other words they remove it by hand in a more extensive operation. After this I was considered fine and my smears came back ‘normal’ (what we all want) for 20 years. Sadly, the scar tissue masked the development of abnormal cells and when we realised I had cancer it had spread into the lymph nodes and surrounding tissue. Yes, it would be possible for them to do another mini-op and take more tissue. It’s even possible to remove the cervix and leave the womb intact, which can be done if the woman is young and wants children - but all these procedures weaken the cervix a little more each time anyway.
I hope it will be all clear for you. But if it isn’t, they will come up with a plan to make sure you are protected from worse outcomes. As from ‘seeing HPV’ - you can’t literally see a virus with the naked eye, but you can sometimes see tissue changes which are caused by HPV, and if this is the case I suspect you will have problems still with abnormal cells.
Take courage! The important thing is that you continue to have a happy life with your pre-teens and if you have to take a little time out for an op - not the end of the world. Let us know how you get on! X
Hello I am sorry that you find yourself again with abnormalities must be difficult after 3 Lletz to be told is not sorted. I believe like Jacks133 said Hysterectomy will be the next step, I had LLETZ without clear margins last May and was given the option of Hysterectomy if abnormalities were seen again. fortunately at my 3 months and 6 months for CIN3 and CGIN Colposcopy was all clear but still HPV positive, during my waiting for Colposcopy I did lots of reading about Hysterectomy and it looks like a very good option for me if abnormalities are seen again I don’t want more kids and the constant monitoring is very stressful and constant worry about cancer.
I may try a 2 Lletz but for sure will look at Hysterectomy also as an option it just seems more final and able to move on with life.
Good luck and hopefully you can find a final solution from this HPV problems.
Thank you so much for your reply Jacks133, and taking the time to read my story.
I am so sorry that you have been through so much, I think your amazing having been through what you have.
I had spoken to the nurse previously in regards to a hysterectomy but was told due to my age (32) they would rather continue with the monitoring and lletz. Although this has been the first time I’ve been asked about my future plans for anymore children, so made me feel that this could possibly be on the cards.
But whatever happens, whatever the results I know that things will work out one way or another.
I’m expecting there to still be changes in all honesty, it’s just working out what happens from here.
I will keep you updated once results arrive.
Take care of yourself and thank you again for your reply. Xx
Hi Hop1, thank you for taking the time to read and reply to me.
Thank you, Ill be honest I’ve got so used to the abnormal results Ive been getting I think I would be shocked if I got an all clear result.
I’m glad to hear that you got the all clear for cin3 and the cgin, hopefully the HPV will clear itself up.
I fully understand where you are coming from in terms of the stress of the monitoring and the waiting for results, I am worried everytime that they will find something but so far so good and long may it stay that way.
We are the same on the children front, we don’t plan on having anymore, I had quite difficult pregnancies with both but was lucky enough to be blessed with my two.
I found that my last Lletz was so much better than my previous ones, I had it under GA, and recovery time was so much quicker and had hardly any issues this time around.
I do think whatever you decide should be your decision, I do think that sometimes they like to steer away from hysterectomy especially if you are still of child bearing age if that makes sense, ive been told a few times it comes down to my age.
I wish you all the best to with your journey, and I do hope that the HPV clears up for you, I was advised by a friend to look into diet changes, which I have just started to hopefully that will make a difference.
Let me know how you get on is always a nice feeling to know we are not alone on this journey none of my friends had abnormal results or maybe they just prefer not to share, so is nice to know I am not alone with it.
Hi Hop1, no, you/we are definitely not alone. May I ask; when you had the LLETZ and the pathology (?) came back with no clear margins, what options were you offered then? Or did they simply want to monitor at that stage? I go in for my second LLETZ next Wednesday after biopsy found CIN3. I’m scared - not really of the procedure as have had once before, but of them finding more. Xx
I will do, and yourself. Always here if you need an outlet.
I was in the same situation, and none of my family have had abnormalities, so at first was a bit of a shock to the system. But I am very grateful to have found Jos trust and all you wonderful ladies.
Hello I had my surgery Lletz for CIN3 and CGIN last May, no clear margins but my gynecologist after the Lletz used what is called Laser vaporization CO2 around the removed area.,that sometimes can be enough to destroy the remaining abnormalities when margins are not clear, she said is not always the case but so far it looks like it did work for me, but I am under constant checks that I am very glad that I am able to have them but is stressful. I had a Colposcopy at 3 months another at 6 months and now I am going again for Colposcopy for the 1 year. My gynecologist said I will be having minimum of 6 months checks for 2 years . I go private . Good luck for your appointment hopefully that will be it and you can put all this behind you, let me know how you get on.
Hi Lilo, it’s actually this week/Weds. Finally. I have been a wreck anticipating this. Not afraid of procedure itself, just desperate for them to get everything. Thank you for asking Xx
Oh no, How awful. I’m so sorry you haven’t been able to get to your appointment. Hopefully it will pass quickly for you. I hope that you are feeling okay. Xx
Hey! Yea, thanks so much for checking in! I in fact had the LLETZ under local only (!) yesterday after my doc squeezed me in as an extra patient during his Tues. clinic. I am so grateful - also for the fact that it was so much better than my first experience of LLETZ. Still yucky, but no pain. But I’m scared still. Of what they may find. :-/ I can’t help but worry.
No problems at all, I’m so glad you managed to have it done, also that your not in any pain. I found my first Lletz awful- it’s hard not to worry, as much as others say not to worry we will until those results come back. Did they give you any Information after your procedure?
I’m good thank you for asking I’m still waiting on results to come back, but received a call to say that I will need another Lletz although couldn’t give me much else about my results over the phone.
Xx
Finally. I have been a wreck anticipating this. Not afraid of procedure itself, just desperate for them to get everything. Thank you for asking Xx
I’m still waiting on results to come back, but received a call to say that I will need another Lletz although couldn’t give me much else about my results over the phone.
