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[Raisinette]

  Hello Ladies,

I've posted a while back and everyone's replies were so helpful, so here I go again!

15 yrs into solid menopause. I'm 67. two yrs ago had slight bleed-ultrasound showed .4mm endometrial lining (good!) and then an endo biopsy was normal. Bleed goes away.

2 years later, this April (exact same time of year as previously- maybe it's spring that's the issue!) I get a couple of days of teeny, tiny bits of bloody "matter" when peeing. Just for safety I go through the same routine; ultrasound this time shows lining of .8 (meaning it's doubled in 2 years) but again, uterine biopsy is normal. Dr says check the ultrasound again in 4 months just to see if it grows.

4 months later I do and it's now 1 CM (meaning it grew .2 mm) which is bigger than what it should be in meno (normal is .4-.5 mm or below). Here's the thing:

1. I have a huge fibroid and some small ones. Plus a benign polyp.
I've read and dr agrees these could be pressing against the lining making it appear larger than it actually is. Also, fibroids can cause bleeding. She also thinks the added .2mm in the ultrasound could simply be human error. The radiology tech seemed slow and not confident in what she was doing, actually.

2. At my request we do blood tests for progesterone and estrogen levels, just to see if these are out of wack for meno... fibroids can do this. The ultrasound shows ovaries look fine.

3. Dr has me also do a CA-125 blood test, just to rule out that there is any cancer somehow flying around in there. While I appreciate this thoroughness, I am having a huge HUGE anxiety attack over waiting for this result to come in. A nurse friend gave me some reading which says fibroids can also RAISE the levels found in a CA-125 test, resulting in a false positive. So now I'm waiting on a test that I actually have KNOWN condition that can make that test invalid! Ugh!

I have no bleeding since this past April, when for the second time I had a normal endometrial biopsy. I'm exhausted from all this worry, these awful biopsies and stress. The last year my otherwise healthy husband nearly died from getting sepsis from a cortisone shot... I cared for him for an entire year of rehabilitation, and thankfully he has recovered, but his care was one of the most stressful experiences of my life. I only add this because we all know stress doesn't make things better.

Has anyone else had this lineup of experiences? Normal biopsies, fibroids, teeny-weeny post meno bleeding that freaks everyone out? I'm exhausted from all of it and so amazed at you all who deal with so much, and help each other through.

One last thing- I have not used HRT at all, except early in meno when I tried several different things that caused very bad side effects. I'm in the US so its only recently that providers are beginning to give it more freely, but it's not for me. Just wanted to add that whatever is going on with me is not HRT related.

Thanks in advance for any thoughts on what is going on here. Be well.

[CLKD]

Anxiety is hard work but your health providers are checking all round - which will give U a base to work from.  Most cancers if they are found early, are treatable.  Once the CA-125 result is in, U will be able to relax.

We all over think!  What do U fear the most, 4 me it was whether anxiety attacks would keep me from the various appts.!

[Northerngirl]

Morning, I would just like to say that even if your  CA125  blood test comes back raised that doesn't mean you have cancer.
In 2012 when I had a tubo ovarian abscess my CA125 levels were extremely high at the time but I didn't have cancer and after my surgery the levels went back to normal....so it can be other things. Your GP is just checking every option to rule out things.
 I've been through the hysteroscopies/biopsies etc and I  know how worrying it can be, 2 years ago I had 4 2 week referrals within 4 months and I spiralled into an anxious state I would never want to go to again. The lovely ladies on here got me through it with their knowledge and advice so keep reaching out.
I know it's easier said than done (believe me I've been there) but please try not to worry too much.
Keep us updated

[bombsh3ll]

Additionally if your ovaries appear normal on multiple pelvic scans the chance of a CA125 coming back raised or of having ovarian cancer (which is the main cancer that particular test relates to) is extremely small.

Also the margin of error for measuring something in millimetres on ultrasound is greater than the difference you are describing.

One sonographer could measure your endometrium at 4.0mm, another sonographer on the same day could measure it at 5.1mm etc.

This is literally splitting hairs, it is arbitrary and when there is endometrial cancer it is typically above 15-20mm.

[Minusminnie]

Also the margin of error for measuring something in millimetres on ultrasound is greater than the difference you are describing.

One sonographer could measure your endometrium at 4.0mm, another sonographer on the same day could measure it at 5.1mm etc.

This is literally splitting hairs, it is arbitrary and when there is endometrial cancer it is typically above 15-20mm.

Thank you from me for that information bombsh3ll.
I was measured at 8mm endometrium recently told by sonographer that up to 10mm post menopause was acceptable with no bleeding but I was still referred on by her for a hysteroscopy & biopsy.

Another time I will make an informed decision as to whether I consent to a hysteroscopy.

Information = less stress

[Raisinette]

Also the margin of error for measuring something in millimetres on ultrasound is greater than the difference you are describing.

One sonographer could measure your endometrium at 4.0mm, another sonographer on the same day could measure it at 5.1mm etc.

This is literally splitting hairs, it is arbitrary and when there is endometrial cancer it is typically above 15-20mm.

Thank you from me for that information bombsh3ll.
I was measured at 8mm endometrium recently told by sonographer that up to 10mm post menopause was acceptable with no bleeding but I was still referred on by her for a hysteroscopy & biopsy.

Another time I will make an informed decision as to whether I consent to a hysteroscopy.

Information = less stress

Hi there Bombshell311 and also Minusminnie and Northerngirl and CLKD

I don't know how to reply to each of you without making a big mess (!) but I very much appreciated all your replies in response to my original post. I did end up getting the CA-125 blood test which tests for ovarian cancer and thankfully it came back fine. Two years back my endometrial lining was .4, and when I'd had a post meno bleed this past April it was .8, and then in October of this year it was .11

I very much appreciated Bombshell311 explaining that it is literally "just hairs" as far as the measure. The nurse practicioner has advised I do an ultrasound again to see in 3 months, which will take me to February. She also said the .11 change from .8 could have been technician error or, since my endo biopsy was fine, just mild hyperplasia that isn't even showing up as hyperplasia.

Also, because I have a rather large fibroid, plus a non cancerous polyp, she thinks those can push against the lining and make it appear thicker? Have you ever heard that one?

She thinks the small post meno bleeding I've had (one every two years it seems) is most likely coming from the fibroid, and as I had a perfectly normal uterine biopsy both times, she isn't concerned.

I'm trying to join her in the land of unconcerned....she said two clean uterine biopsiesin two years- every time there has been an incident of bleeding, is a good thing and that is the proper protocal. She said the CA-125 being negative is also reassuring to her. She basically seemed unconcerned and I'd like to feel that way too.

I must confess that although I feel like she is being very thorough and I need to let it go, anxiety is causing me to think about it a lot, to worry that there will be another unspecified bleed. It seems a lot of women here have posted about having various symptoms and then being told to get a hysterectomy, only to find out after that there was never any cancer in the uterus.

I feel like our uteruses are not deep space (!) but because women's health research is so sluggish, we are still treated as if things are a mystery. Sort of like-maybe the fibroid caused the bleeding, maybe the polyp, maybe stress, maybe the moon....

Sorry to vent, I really had wanted to thank you for having replied to me in October around this time, because your replies really helped me to calm down! Hope you are well.

[Northerngirl]

Raisinette, glad everything is ok for you and everything was clear. I do get what you mean about our uterus's having a mind of their own. Two years ago mine was 8mm thick and this June it was 2mm,after my biopsy was all clear last year they never suggested anything to thin the 8mm down....which I found strange because before my biopsy you'd have thought it was the end of the world the way they all went on.
Like you say if your consultant has no worries you need to try and put it out of your mind the best you can or you'll be in a constant state of worry and anxiety which isn't good.
Wishing you all the best and keep us updated 😊

[Raisinette]

Thank you Northerngirl

I'm not sure I'm replying directly to your post but trying to!
I appreciate what you say and I'm trying to take a calmer approach to the moment. I've been through so much over the years, with careless providers and unmedicated uterine biopsies which caused both pain and stress. All of these things were done with reason at the time, but the more I learn, the sadder I am about how little I knew earlier. But there's no going back, only forward, so I hope you are well. I find it funny as well that your provider didn't have much to say given that your lining went from 8 to 2, which is great. I mean, you'd think they'd say "Well, it's normal now but before it was larger and that's normal too!" Maybe there are fluctuations. Other than here there is so little actual experience shared. I'm glad I found this board!
Thanks again!