Is heavy bleeding serious in Lynch syndrome?

Question

Hi doctor,

I am 36 and have been dealing with extremely heavy menstrual bleeding for the past seven months. My GP keeps telling me it is just stress-related and to track my cycles, but I am soaking through a super tampon every 45 to 60 minutes on the worst days and passing large clots regularly. My hemoglobin is now 8.8 g/dL, and my ferritin has dropped to 4 ng/mL, and I am on iron supplements but barely keeping up. I asked my GP about getting a pelvic ultrasound to check for endometrial issues, and she said I am too young to worry about endometrial cancer and that fibroids are probably the cause without actually doing any imaging.

My mother was diagnosed with endometrial cancer at 42, and I have Lynch syndrome, which was confirmed through genetic testing two years ago. My gynecologist prescribed Norethisterone 5 mg to control bleeding, but has not investigated the underlying cause. I feel like nobody is taking this seriously enough, given my family history and genetic risk for endometrial cancer.

Should I demand an ultrasound for heavy bleeding at my age, especially with Lynch syndrome, or am I overreacting?
What investigations are actually appropriate for someone with my risk profile?

Please help.

Answer 1

Hi,

Welcome to icliniq.com.

I can totally understand your concern.

I would like to reassure you first that, no, you are not overthinking.

You definitely need an investigation for your heavy bleeding. The cause could be anything benign (non-cancerous) or cancerous changes. Given your family history of Lynch, you definitely need more attention.

First of all, I would advise you to talk to a gynaecologist to get a clinical examination and then an ultrasound to look for the local pathology (if any structural cause is there, like fibroids, adenomyosis, etc.) or thickened endometrium. This could again be due to hormonal changes as well. You need to have a track of your bleeding episode written down to show it to your gynaecologist and an objective way to quantify it, such as the number of tampons, clots, etc.

Also, an endometrial biopsy sampling after a diagnostic hysteroscopy would be helpful in your condition if the ultrasound shows a thickened endometrium. If these things are ruled out, you can be considered for hormonal measures to control the heavy bleeding. But definitely, a cause needs to be established.

I hope I can address your concerns.

Take care.

Best wishes.