Numb with an undertone of sheer panic…. help please… Glandular dyskariosis (CGIN) and HPV High Risk

Hi there everyone,
I have been reading so many of your beautiful posts and I am amazed by your strength, and courage, and I thought I was coping ok but today I totally broke down, so I guess I’m looking for a bit of support or someone to just read my story.

  • 2 years ago, in 2020, I went for a routine Pap smear that showed borderline cell and HPV positive , but I NEVER got the results (Covid? Address change?)

  • In April this year I received my second letter inviting me for a Pap smear and as we had just started trying to conceive (our first), my partner pushed me to go and do it (I think I may have received similar sort of letters last year but put it off)

  • In the meantime, I have been struggling for 2 years now to have a diagnosis for my cyclical pelvic pain, which has been tentatively diagnosed as endometriosis by several consultants, with minor adenomyosis (and three tiny fibroids). I also have random spotting mid cycle but I think and still hope it’s because of the potential endometriosis (no deeply infiltrating endometriosis was seen on MRI nor ultrasound, so I may have superficial endometriosis)

  • back to my Pap smear performed in April. I showed up to the GP thinking that this was just a routine Pap smear, and the nurse said « ok so you’re coming back because your last Pap smear was abnormal » and this is where I learnt, in shock, that the last Pap smear 2 years ago was abnormal and I was never informed of it.

  • results of the Pap smear in April this year said I had dyskariosis of glandular cells/ CGIN with high risk HPV.

  • had a urgent referral for a colposcopy with the NHS and the gynaecologist wanted to do a LLETZ there and then. I said there might be a chance I could be pregnant so we agreed to postpone the treatment until I got my period. He also did not take a biopsy as I kind of refused then.

  • got my period, not pregnant, but went to see a gynae oncologist privately, who performed a punch biopsy and then performed a LLETZ with a Fischer cone a week later (we did not have the results of the punch biopsy which was a shame but still needed to do the treatment regardless) and he also took two biopsies further up my uterus. (Which was incredibly painful)

  • I am now awaiting the follow up appointment with this gynae oncologist on the 22nd of June to discuss the results.

I thought I was doing ok after the LLETZ which was 10 days ago, ok maybe only just for the past three days as I was in excruciating pain for a full 2 whole days after the treatment (a horrendous endometriosis-type never ending flare up) and then just resting for a week. I am no longer in pain. I am just most often numb, a bit foggy , but actually deep down, I am absolutely and utterly petrified.

Scared of having to have another LLETZ which would postpone the trying to conceive yet again (I’m turning 40 so time is of the essence), scared of it being worse than CGIN, scared of having to have a hysterectomy eventually, scared of not having a hysterectomy to preserve my already shaky fertility and cancer being missed (I say « shaky fertility » as I’m turning 40 and can’t have IVF because of diminished ovarian reserve).

Just totally, utterly scared, and feeling quite lonely.

Thank you so much for reading this quite long post, and I’m sorry for being so sorry for myself…… :pensive:

It’s a horrible time but hopefully soon you’ll have some answers. I had a cervical growth flagged at my stretch and sweep appt, 40wks pregnant with my 2nd baby. Was told could be CC but got sent for an urgent MRI 10 days after having baby by c-section and was reassured was CGIN. Sent to gyn onc surgeon and a cone biopsy was scheduled. Actually had a LLETZ performed under spinal. They’ve since found an early adenocarcinoma and now know they’ve left behind more CGIN lesions and possibly more adenocarcinoma. Having a repeat LLETZ and then will have a hysterectomy (we’ve decided our family is complete for the sake of our living children). I know that I would’ve been offered a trachelectomy if we hadn’t made that decision. It complicates a pregnancy but doesn’t exclude it. My surgeon also said that at my age (36) he would advise retaining an ovary so I guess if we really wanted more children, there’s still the option of a surrogate.
This has been hard enough on me making decisions about my future fertility. I’m so sorry you’re facing this without any children yet, especially as it was something you were actively pursuing. I’ve read plenty of stories on here of treatment preserving fertility so it’s definitely possible. Keep us updated x

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Hey lovely, just wanted to send some love… I’m so sorry that you’re feeling anxious and I can totally understand why… I’m hoping that we both get results that say we’re completely fine and you can start a family asap. I know it’s easier said than done as I’ve been a mess since I got that letter 2 weeks after lletz buttt try not to worry too much, I’m hoping for the best for you, and I have everything crossed. Keep us posted xx

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Dear KB73, thank you so much for your kind answer. It must have been such a shock to hear this news whilst being pregnant and I am so sorry to hear that they have left some behind and that you’ve had to face such difficult decisions. It’s good that they have caught it early though and you seem to be in good hands.
As you say, I find it much more difficult to take these kind of decisions when it’s not just “get rid of it all” but also take future fertility into account. I hope your other operation and hysterectomy go well for you, when are you having it? X

Dear Jodeang, thank you so much for replying to me, and finding my story! Your message is so so kind…. :smiling_face:
I was thinking of you today. I hope you will manage to speak to someone tomorrow regarding your letter.
Fingers crossed for you and hope you can get some rest before your appointment x

Hey lovely,
So I’ve not long got back from my appointment. Was a bit of a shock and I’m confused about how I feel. They said I did have cancer stage 1a1 so very early but that they’d got it all with the lletz. She said I’ll be monitored closely for the next 10 years, and if my family was complete they’d be advising me to have a hysterectomy but because I may want more kids they will do it further down the line… so I’m a bit upset but also feel like a fraud as I’m lucky and technically ok… xx

Hey hun,
Thank you so much for updating me!
Oh lovely please don’t feel like a fraud… :hugs: whatever the stage, the diagnosis of CC is scary and you’re allowed to feel all the feels. Bless you. I’m so happy they got it all with the LLETZ and the margins are clear. but yes, being monitored closely for the next 10 years is going to be tough, as it will be a constant reminder that you have had “something”, but at least, that’s better (I find) than being told “ok see you in three years”, you get to keep a close eye on anything developing and you can feel a bit more in control of everything. I am so so happy that you can now look forward to more kids as a great project to look forward to before the hysterectomy! Big Big Hug xx

Thank you sweet, I think it will take a few days to process but then I’ll see the positive side. Please keep me updated with you!! Xx

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Yes, take all the time you need to process and take care of yourself, be kind to yourself, you’ve been through a lot, and you’re still in shock. I wish you all the best and will keep you updated when I get my results on the 22nd of June xxx

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My 2nd LLETZ is next week. The results of that pathology will determine whether I have a simple or radical hysterectomy (if just CGIN lesions then will be simple, if further CC then will need a radical procedure….something I’m keen to avoid if at all possible). Where are you at? Any further forward?

Just an update. I’ve just had my follow up appointment today and they confirmed that they found a lot of CGIN but the margins are not clear, so I will have to have a second LLETZ, which I am having on the 9th of July. The HPV strain i have is 16. The consultant said that if I had completed my family they would recommend a hysterectomy. (But we had JUST started trying)
I am sad, confused, and cannot believe that I have to re-live these 4 weeks of painful recovery and mental anguish again, but I guess it’s better than cc and I have no choice…