Hi all
i was diagnosed two weeks ago following a hysteroscopy where they found a large mass, 5,7cm on my cervix. My gynaecologist seemed very disappointed that no one had examined me previously although I don’t remember much as went through a whole gas and air pen, bled so heavily I was in the stirrups for nearly two hours, needed silver nitrate and monsels, then got kept in.
I’ve been complaining about heavy menstrual bleeding since i started on blood thinners in Aug 2023 after a weakly provoked pulmonary embolism. I had a smear test just before than which was normal. I don’t recall any more pelvic exams but have been to A&E seven times this year for pelvic pain or HMB. 3 of the occasions I had pyelonephritis but the other three more recent times was for specifically hmb and no one examined me. I had an outpatient gynae appointment, he booked me for an urgent hysteroscopy as the plan was to have an ablation, and still no exam. So when the consultant got to the hysteroscopy understandably he was furious no one had examined me. My ferritin was 7 in the summer and I needed iv iron, yet still no one looked at my cervix. I think the last time someone looked was during a transvaginal ultrasound in Oct 2024 but these can miss small tumours apparently?
I also have a rare autoinflammatory condition I take a biological for, and I find doctors like to blame all my other symptoms on that illness. But SCC is so common, I wouldn’t be facing 6 weeks of chemo, then 6 weeks CRT, and I would have been eligible for surgery. But now they’re not sure if it’s spread into the parametrium and say the tumour is too bulky for surgery.
I suspected something was wrong when the doctors were being cagey, and I got to a point post-hysteroscopy where I stopped getting better, and got worse. also the MRI and CT CAP were a bit of a giveaway, although was still hoping it was a bulky, benign mass. However, induction chemo starts on Monday.
I’ve put a compliant into both Pals and my GP surgery straight after the hysteroscopy. But it’s too soon for me to worry about going down the “delayed diagnosis” route, I’m more worried about how I’ll react to the first round of chemo.
I feel like I’ve had a year of extreme fatigue, and such heavy bleeding for nothing, if only someone had thought to look, even a few months earlier. No one can “make” their ferritin drop to 7 I suspect, even if they tried, yet it didn’t trigger any alarm bells.
Is this a common experience, to have major symptoms missed or written off or not carry out basic checks and tests as the NICE guidelines dictate?
Hi Yennefer
Your story is really sad and it’s been awful to read how many times you tried to get help, yet no-one actually examined you. That’s truly shocking given the symptoms you were displaying.
This didn’t happen to me personally-if you click on my name my profile tells the story of how I was diagnosed, and I didn’t have the issues you faced. Once I went to my gp, she could obviously see my tumour which was actually smaller than yours but still visible to the naked eye.
It would not be possible to have surgery with a tumour of your size now, and potential spread to the parametrium, which I also had. But you now need to focus on getting through treatment. I didn’t have the induction chemo myself as it wasn’t standard treatment in 2018 when I was diagnosed and I turned down the opportunity to go on the trial for it, but others in the group have done it so will be able to share their experience.
You may choose to escalate things in terms of your complaints when you have a response from PALS and your gp and I certainly think that would be worth doing when you are able to. For now, I hope you can get your induction chemo started and get through this with good results.
Sarah xx
