Biopsy results and errors

Hi,

I’d really appreciate a bit of support and insight as I have nobody to talk to about this.

I had a smear just before the summer holidays, a year overdue because of lockdown. I’m 40 and have always had them on time previously, with no HPV or abnormal cells found.

About 15 years ago I had a colposcopy with a normal result, although they told me i had Endometriosis, it was never mentioned again and doesn’t appear on my records. I’d had a small bump on my cervix ever since that time.

A few years ago, I had heavy bleeding for over 6 weeks, resulting in anaemia. Out of desperation for answers, I booked a smear but my GP surgery refused to carry it out and cancelled it, telling me it wasn’t due for another year.
An ultrasound showed suspected fibroid growths in my uturus and large ovarian polyps. I was told this was normal so no further tests or treatment was offered. Since then I had my second child.

This last smear was a bit strange as the nurse was quite elderly and made odd comments about my body. I also let her know that I’d recently found more, larger lumps on my cervix.

The result came back HPV positive with moderate cell changes. I was immediately booked for colposcopy and was assigned a (cancer) liaison nurse at my GP surgery, who told me it was nothing to worry about, and answered my questions about HPV (I’m a widow). She also told me I should have been referred for a smear instead of turned away after the heavy bleeding years before.

At the colposcopy i was prepped for a lletz, but instead they took three biopsies, and said I couldn’t have the lletz because they had the wrong kind of equipment. I was disappointed that the consultant refused to discuss his observations or what was on the screen, which looked shocking compared to my previous colposcopy.

I haven’t been feeling 100% for over a year, and have also had lung problems that are being investigated (non covid related, non smoker), so I’ve been extremely worried I may have metastic cancer.

My results were due in 6 weeks- I spent the whole summer holiday trying to stay positive for my young children, petrified I might need treatment, or that there’d be lengthy delays.

I spent the last two weeks calling the colposcopy dept as I was advised to, with no answer or replies to my messages. After getting PALS and the GP surgery liaison nurse involved, i finally got a call, telling me my results are with the consultant but the biopsies were clear of everything- no abnormal cells, no HPV.
The secretary told me there would be an investigation and meeting before they write to me with the results and treatment plan, as it seemed the smear was wrong.

Over the last 4 weeks i’ve had new symptoms of slight urine leakage (which i don’t feel but can smell), heavy watery discharge, and pelvic pain/pressure on my right side.
She said these are almost certainly nothing to do with colposcopy and I should ask my GP for a Gynae referral.

I want to feel relieved…but I still have all these unexplained symptoms, and I feel like a lot of mistakes have been made. I don’t think I can trust my GP surgery or the hospital as both have terrible reputations.

I want to make sure I’m doing all I can for my children, but I don’t have anyone to fight my corner and don’t know where to turn for help?

Thank you for reading.

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