Hello everyone. A little background: Age 48, 4 children, perimenopausal, Multiple Sclerosis (I was treated with Cladribine about 4 years ago, I was told at the time that it might increase chances of cancer, but then they changed their minds about that and they no longer believe that's the case.) I've been on Mirena coil for years (I think this is my third one). This always kept my bleeding very light, then it suddenly became very heavy a couple of years ago. I had an ultrasound in Oct 2023, which didn't show any abnormalities, uterine lining was 6.8mm thickness. The heavy periods continued over the past few years, getting progressively worse, particularly since around Christmas time. I was bleeding for weeks at a time. Often extremely heavy with massive clots up to 4 inches long, soaking through many pads, clothing, bedding. Had a TV US 3 weeks ago. Results: The fundal endometrial thickness was 33.5mm, tapering to a normal diameter in the mid/distal segment. Very distended fundal endometrial cavity containing heteregenous debris with associated doppler flow. The ovaries look fine, and so does the myometrium. It says I'm to have an urgent referral for a hysteroscopy. I understand I should have been seen within 2 weeks? It's now 3 weeks post-scan and I've not heard from the hospital (my GP said that on the day of the US she had contacted them and requested the hysteroscopy to be expedited but I've still not heard). I called my GP surgery yesterday, but my doctor isn't available for a call until next Wednesday. From what I've been reading the focal area and the thickness point to it being a higher chance of something unpleasant. Also, given that the Mirena is often the first line of treatment in womb issues but I've been on it for years and so obviously it's not working in this respect. I'm freaking out a little, but also trying to be practical and be as well-armed with information as I can be. Has anyone else had such a thickness? Any advice on pushing for the next tests?
Well done for keeping up with your cervical screening.
The screening test in this case is looking for the presence of HPV. If HPV is found then further testing is done. The testing is to screen for the presence of HPV. Although it is possible to have cervical cancer with a negative HPV test.
There is no current screening test for endometrial/womb cancer- but any symptoms such a post menopausal bleeding/pain etc need to be reported and investigated further.
Am just popping this on here for others to see as there have been ladies in the past who have thought that their cervical screening/smear tests coming back clear meant that they had also been checked for endometrial cancer.
Thanks for making that point Jane. I’d just like to add that the cervical screening test is not a test for cervical cancer, as it’s possible to have cervical cancer with a negative hpv test.
As you say, it’s screening for the presence of the hpv virus, and no further checks are made if the virus isn’t detected at the time of the test.
Sarah xx
Hi
Welcome to the Womb group.
I am sorry to hear of your bleeding and other troubles and understand that this is a scary time and you just need answers.
it sounds like your ultrasound in 2023 was clear and there was no issue with hyperplasia. (Thickened endometrium)
It sounds now as if you have some form of hyperplasia and that the womb lining is thicker than they would like and that coupled with your heavy bleeding means they need to take a closer look. This is why they are suggesting a hysteroscopy. During the hysteroscopy they would normally take some biopsies to hopefully rule out cancer. This would normally be done on the urgent pathway in post menopausal ladies.
It is promising that your ovaries and myometrium are looking ok which would suggest that the issue is within the womb lining.
You are right in thinking that the mirena can have a part to play in treating cancer for some ladies. It may well be that it has worked for a while but is no longer working as it should. In these circumstances there have been ladies on here who have had their coils removed and replaced or had additional hormone treatments. It may be worth asking about this.
With the amount of bleeding you have had it may be also worth asking about routine bloods (if they have not already been done) for checking in case there is any anaemia. I remember my CNS saying that any heavy bleeding, that soaked through a pad within an hour, particularly where there were large clots and pain is a reason to seek medical advice straight away as it would need treatment. There can be treatment given to lessen the amount of bleeding under certain circumstances.
Waiting for further tests can be scary but we do have the Support Line available from 8am-8pm daily if you feel it would help to talk things through. There are also many lovely ladies on here who will want to offer support if there is anything you want to ask about.
I hope that the hysteroscopy can be done quickly and you can get a plan going forward. It is worth asking to go on a short notice cancellation list if your hospital has one. Any changes in symptoms, particularly if bleeding gets worse, you need to contact your doctor for advice.
Jane
Thanks SarahH21 .
