Complex Atypical Hyperplasia - Endo lining 65mm

I'm new here and facing surgery in 3 days. I've been diagnosed with Complex Atypical Endometrial Hyperplasia with focal cribriforming. I was referred to an oncologist who told me that there is a 40% chance I have concurrent cancer (a conservative estimate, he said, believing it to be higher in my case). I will have my uterus taken first which they will biopsy while I'm still in surgery - my ovaries and lymph nodes will also be taken if cancer is found. Due to the size of my uterine lining (65 mm), I have to have the abdominal procedure. I'm single, 39 years old and do not have children - there are so many feelings and fears surfacing. Looking back, I probably began having symptoms a few YEARS ago (constant watery discharge), but it was the more recent 7+ months of daily heavy bleeding and anemia that ultimately led me to seek treatment. I had not been to the doctor for 10 years, a fact I now regret, but a previous sexual assault had made these exams particularly difficult for me and I avoided them at all cost. Hopefully the ultimate cost is not my life. I guess my question to the group is, has anyone had or heard of a uterine lining this thick (65 mm) where fibroids are not present? For all my Internet searching, I can't seem to find any cases of it being that thick, and it makes me even more worried that they're going to find cancer...and given the potentially long period of time before seeking treatment, I'm worried it could be quite advanced. What have your experiences been with this diagnosis? I'm wishing everyone on here the best of luck and am grateful for the safe and supportive environment. Thank you.

Hello, And welcome to the group. I am so sorry that you are going through this. I have to admit that I had to do a double take when I read the thickening of your uterine line. I also, have never heard of anyone having a lining that thick.

I too have Complex Atypical Endometrial Hyperplasia but have never heard of focal cribriforming? My lining was 13mm. I am due to have surgery on the 29th. I am 34, single, never married, and also have no children. But always wanted them. I figured I had time. I guess I was wrong. It's a feeling that's really hard to describe. I felt so very out of control, and like one of my biggest dreams was taken from me. And really there was nothing I could do about it.. but accept it. I do not feel as though I'm losing my "womanhood". In all honesty I have been guilty of saying "if I'm not going to have children, I wish God would just take my periods away". I guess the saying be careful what you ask for applies here. He's taken them alright, and everything else associated with them (but my ovaries due to my age..unless something is wrong of course).

I really wish I could give you some words of wisdom, but I'm right there with you, going through all the emotions, shock, disbelieve, worry, and fear. You're not alone.

Fairlight, I don't mean to offend, but are you *sure* that the doc said your lining was 65mm thick? That's about 2 1/2 inches. For comparison, the average uterus is 80mm long, 50mm across and 40mm thick (http://emedicine.medscape.com/articl...view#aw2aab6b3). If you have neither children nor fibroids, it's all the more unlikely that your uterus is any larger than this.

I'm not surprised that you couldn't find any cases on the Internet about someone having a lining that thick. What I'm wondering is, might it be possible that you misheard or misremembered what the doc said?

I wonder if the doc meant 65 mm uterus., meaning the lining is 15 mm? I would get that clarified from the doc.

Hey there... Sorry you had to come here under the circumstances but glad that you did. Your story sounds similar to mine. I started to have irregular periods with clots getting bigger and bigger every year culminating into months with huge blood loss the size of my fist and spotting for most of 2014 before I went to a doc to get it checked. I waited ten years as well because I was in denial. I was initially diagnosed with a grade 1 endometrioid adenocarcinoma this past July. After surgery, the final diagnosis was grade 1 stage 1A endometrioid adenocarcinoma. I consider myself lucky after having waited a decade.

They also found complex hyperplasia with atypia. Interestingly, this is pretty common - to find a mix of cancer and the hyperplasia. Unfortunately, complex hyperplasia with atypia basically means I had really bizarre looking endometrial cells which essentially is what cancer cells can be described as too. At least one of my friends was diagnosed with this type of hyperplasia and had a hysterectomy only to find out after surgery that they found cancer too. So yes, they can be concurrent.

65mm does sound quite thick... Mine was at 45mm at the time of my ultrasound which is pretty thick. I think at the thickest point of any given menstrual cycle it normally isn't more than 11mm which is on the high end as it is.

Did they determine your thickness from an ultrasound? I'm guessing this is how they determined yours. Having said that, you should read your report carefully. It may be 65mm at the thickest point perhaps which probably isn't impossible per se. But it almost certainly means you have an enlarged uterus. It could be indicative of a polyp or fibroid but they can't really tell until they inspect it which unfortunately could mean a hysterectomy in the near future. Mine was considered the size of a 10 week pregnancy and while I had robotics surgery with vaginal delivery of the uterus, my surgeon did warn me that he may need to revert to an abdominal surgery if he couldn't deliver the uterus vaginally.

In my case, they could not find fibroids either during the ultrasounds or pelvic exams. It wasn't until after my hysterectomy with tubes and the right ovary removed when they realized there was a very large polyp, fibroids and cysts. None of this showed up on the ultrasounds at all. The tumor was around at 6.3cm x 5.5 cm but it didn't invade the myometrium thankfully and stayed in the lining only. The lining was found to be 2.5cm thick which is about half of what it was 1.5 months earlier. The thickness changes throughout your cycle. Ideally, they perform these tests right after your period (I think).

It must have looked pretty messy in my uterus but ultimately it was caught early and no further treatment was necessary. Is your surgery being done by an oncologist? I would highly recommend that you have it done by one in case cancer does come into play. Please keep us updated and good luck.

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Originally Posted by kittynyc ...Did they determine your thickness from an ultrasound? I'm guessing this is how they determined yours... ...In my case, they could not find fibroids either during the ultrasounds or pelvic exams. It wasn't until after my hysterectomy with tubes and the right ovary removed when they realized there was a very large polyp, fibroids and cysts. None of this showed up on the ultrasounds at all...

That's another good point: all the ultrasound does is to take a picture, and then a radiologist interprets what they see in the picture. A friend of mine of was told on the basis of an ultrasound that she had a thickened endometrium. Her gyn did a D&C and discovered that what she actually had was a *huge* - but perfectly benign - polyp that filled the entire uterine cavity.

Wow, thank you all for your replies and insight. Kittynyc, it does seem like we had a nearly identical case. My lining was in fact 65mm, but as you say, the sonogram report states "at it's largest point." My doc said it was the size of a 16 week pregnancy, which is why he went with the abdominal surgery, and the op report said it weighed 520g. I am now 2 weeks post-op and it turns out that cancer was found. Diagnosed grade 2 stage 1A Endometrioid Adenocarcinoma. I had two tumors, the primary one measuring 9x7cm. I also had a small fibroid, a polyp, extensive adenomyosis and numerous cysts in both ovaries. Now that the shock of a cancer diagnosis has settled somewhat, I am just incredibly grateful that it was caught early, even after I allowed it to go on for so long. I have check-ups with the gyn/onc every 3 months, and I will not procrastinate on matters of health again. Thank you again for the support and valuable insight. Wishing you all the best.

Wow. Your uterus was pretty big. Mine weighed about half of yours but that included all the other bits - ovary, tubes, etc. I was pretty surprised by all the extra problems they found - fibroids, polyps, cysts, etc.

Glad they caught it early! That's great news! I hope your recovery is quick and easy! Hopefully, you'll be able to put this all behind you and move on to a healthier life.