Cut a long story as short as I can I have had trouble with reoccurring severe abnormal cells high risk hpv and had 3 loops over the past 11 years.
Most recently was a smear July 2020 came back high risk hpv, severe abnormal Cells so had my third loop. Has test of cure smear jan 2021 results high risk hpv, scanty severe abnormal cells offered 4th loop, I turned it down as hardly no cervix left due to previous loops being big, asked to be referred for hysterectomy, mean time had to have uterus ultrasound scan result shown very bulky and thick uterus lining (22mm) also possible polyp. Went for hystoscopy June 2021 couldn’t do as cervix too short and scarred to preform, agreed for hysterectomy referral, had a colposcopy June 2021 that show CINII under iodine, no treatment as that was when agreed refere me for hysterectomy. Jan 2022 had a smear while awaiting operation due to previous smear results, had an endo and exo smear done, results came back as high risk hpv, severe grade dysplasia and also possible suggested invasive cells (was told these was cancerous cells) had a biopsy done shown no cancerous cells, but endometriosis cell, asked how did it show cancerous cells but now shows endometriosis cells, doc said he thinks was the endo cells the smear probably picked up not cancerous cells,
Received a letter today my consultant has sent my gap stating the biopsy finding saying NO precancerous changes (no abnormalities) but shows cervical endometriosis, discussing me in MDT meeting as smear shown invasive changes as well as high grade dysplasia and high risk hpv,
What I’m struggling to understand is how can smears and previous colposcopies show and pick up severe abnormalities and yet the last biopsies show nothing apart from CE yet since loop July 2020 I had no treatment for abnormal cells and from the two smears those cells became more,
Has anyone else experienced this?
I am 35 and 6 children
I haven’t had the same experience as you but I can empathise with how stressful it is to get apparently conflicting results.
Cytology (for smear samples) and histology (for biopsy samples) are not precise sciences and the results are dependent on various factors including the quality of the sample etc etc. On the whole the system works pretty well but, as with most things in life, it seems there are exceptions.
The good things are that you are being closely monitored and the issue is to be discussed at an MDT meeting so it sounds like your medical team is doing their level best to make sense of the situation.
Hi, it might be worth discussing the below with your consultant as it appears from what you’ve written above you have cervical endometriosis? I can’t include links in my post but the paper is titled ‘’ Cervical Endometriosis, a Case Presenting With Intractable Spotting
Baris Ata, MD, Ugur Ates, MD, […], and Erkut Attar, MD, Associate Professor’’
‘’ Cervical smears can be misleading in cases of cervical endometriosis. Particularly, when cervical endometriosis is present in patients previously treated with conization for preinvasive lesions of the cervix, cervical smears can be misinterpreted as high-grade squamous intraepithelial lesion, atypical glandular cells of undetermined significance or adenocarcinoma in situ.[7–[10]]() The reason for this is that endometriosis undergoes different cytomorphologic changes under the influence of hormonal fluctuations during the menstrual cycle. Patients who have undergone hysterectomy after abnormal smears were obtained but were subsequently found to have cervical endometriosis on pathologic examinations have been reported in the literature.[[8]]‘’
I would personally be asking for what cytological examples are still available to be reassesed with knowledge of your most recent result, both to give you an explanation / peace of mind, and as a potentially informative excercise for those that asses the samples.
It may not be the answer, I am not medically tained, but it is always worth asking those that have been treating you. I responded as I have been told I have endo around my cervix once by a particularly observant doctor, and was googling for myself last night - your post rang one of my own bells. If you do discuss it with them and want to share I would be most interested in what they say! They might dismiss it out of hand, but I can understand your confusion!
