CSN Login
Members Online: 5

You are here

18mm endometrial lining

AnnieB33
Posts: 19
Joined: Jul 2021

Asked this on the gyn forum and then saw this one may be more helpful.

I guess I'm just trying to see what I'm headed for...

I'm turning 50 in a few months, and have had three full years of crazy periods from so heavy I was frightened and almost a month long, to missing period for months, to pink for days. Strange discharge from clear water to all colors. Endometrium is just over 18. Uterus is enlarged. 2cm polyp showed in ultrasound, which has doubled since we checked it a year ago. Cramps that wake me from a sound sleep, and some low right side pain which the ultrasound didn't show any reason for.

Seems like the most important thing is the 18 thickness, but my doctor says this can happen with polyps, and she's never seen a polyp come back cancerous in her career.

Dr. Google says polyps don't change thickness, and 3% of polyps are cancerous.

I'm having a hysteroscopy and polpyectomy, do I need to be worried? 

LouDy22's picture
LouDy22
Posts: 25
Joined: Apr 2021

Please please please for your sake have a DNC, mom went in for polyp in March of 2021 and he we are Carcinosarcoma Stage 4B in July

AnnieB33
Posts: 19
Joined: Jul 2021

CryI'm sorry to hear about your mom, and hope she is able to get it completely taken care of. Must be a very aggressive cancer! I had a very bad experience with D&C many years ago. Very scared to do it again. I wonder if my doc could just take several biopsies with the polyp.

Harmanygroves's picture
Harmanygroves
Posts: 232
Joined: Jun 2021

Hey there, welcome to the board! I'm new here too, but have been through all the tests and surgeries and radiation, so I would like to mention that a very close friend advised me to get my D and C, hysteropscopy, and polypectomy done under General Anesthesia so you don't have to suffer pain and anxiety at all! It really worked for me. 

I am so glad you are getting yourself checked out very thoroughly. Please let us know how things go! I also had a thickened endometrium and some spotting. Of course, around the age of 50, I was having some very odd periods and because I had endometriosis, it was always kind of a trainwreck.

Welcome, and don't fear the D and C. Many years ago they may not have know what they were doing. Deep breaths, and cross the bridge when you come to it. One test at a time, girl!

All the best---

Deb

AnnieB33
Posts: 19
Joined: Jul 2021

Was she caught completely unaware? Or did her symptoms get blown off by Dr.?

LouDy22's picture
LouDy22
Posts: 25
Joined: Apr 2021

she was completely unaware , we were out having some drinks and she just fainted and passed out , it was very scary , she found out at the hospital she had heart PVCs and then they did a CT scan of her abdomen and they found a couple polyps and biopsied one of them and now here we are 

AnnieB33
Posts: 19
Joined: Jul 2021

Oh no, that must have been a horrible shock. I pray she will be okay. It's crazy, but we know several people with different stage 4 cancers right now - and through them, we've learned they've come a long way in being able to treat it!

LouDy22's picture
LouDy22
Posts: 25
Joined: Apr 2021

Yes we actually just got home from UNC Chapel hill today for a second opinion and they are going to start immunotherapy 

AnnieB33
Posts: 19
Joined: Jul 2021

That's great! Laughing

Forherself's picture
Forherself
Posts: 566
Joined: Jan 2019

Welcome.   We are a very active board and do have lots of experience with this.  Many women come with questions like you, and most leave after a negative biopsy.  One in 10 biopsies are positive for malignancy.  So you do have symptoms that need to be investigated, and I am thinking they did wait a long time to investigate your bleeding.  But now you will have a biopsy and that is good!   I had a thickened endometrium like yours.  I did have cancer cells in a polyp but nowhere else.  Right now I would just relax.  Chances are eerything will be fine.  But maybe you want a hysterectomy to end all the risk of future cancer and all the bleeding.   Just sayin.  Please feel free to ask questions.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Welcome Annie. You have come to a great place for information and support. 

My polyp WAS cancerous. In fact it had serous and the garden variety type in it. I had a D and C and a hysteroscopy to remove the polyp. It was done under sedation and was an easy recovery.

I also had a tiny tumor that was serous in my uterous that was found after my hysterectomy.

You may want to consider getting a second opinion from a GYN ONC. 

Please come back and let us know what you find out.

Love and Hugs,

Cindi

 

AnnieB33
Posts: 19
Joined: Jul 2021

I wonderif if I go to one of these without a referral. My doc would think I'm a hypochondriac!

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

until you have been properly diagnosed. Usually, your gyne does the dx, and then refers you to a GO, or you can initiate contact with a large cancer center and they will have the gyne do the dx and then refer you to their GO. The benefit of this is that it is usually a one stop shop, where they seamlessly in one facilty do the dx, surgery, treatment, etc. if your dx comes back with cancer, rather than one stand alone gyne, and a stand along GO you can get an intergrated treatment plan. Many of us get 2nd opinions at these institutions as they see these cancers and the rarer forms everyday, instead of once in a while. The odds are that you do not have cancer, and hopefully you will find out what is causing your problems. I had cancer in two polyps, UPSC, and in the endometrium, stage 1a. My orginial gyne told me and my husband after hysteroscopy and biopsy that I was cancer free because he could not "see" any cancer. Told me how lucky I was, until two days later the preliminary pathology indicated UPSC and clear cell, high grade, and then referred me to his buddy, the GO, who was terrible as well. After this GO refused to schedule me quickly for surgery, we contacted Mayo, who did my 2nd opinion, surgery and treatment. I never regretted my decision once, even though I travel 6 hours by car to see them. The doctors there have coordinated with my local docs so it is good to know that these doctors gladly do this. The process of getting an accurate dx is time consuming and can be pretty exhausting, as we don't know what we don't know and we don't even know what questions to ask! Good luck to you and come back and let us know how you are doing.

Denise 

AnnieB33
Posts: 19
Joined: Jul 2021

It's so crazy that he told you that you were cancer free because he couldn't SEE any! Scary - and this is why you all are helping me see I need a D&C, sometimes you can't see it, and random biopsies may not catch it. Good to know about Mayo, I've heard such great thingsSmile

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

Sadly, I am not the only one here who tells a similar story. When we first have our symptoms we start a process that to most of us is 100% uncharted territory. We learn from the mistakes that were made, we learn the step by step process of treatment, side effects and survivorship. We learn that some of the gynecologists are lacking in their current knowledge, or just set in their ways, or just haven't seen enough of these cancers. I think of our support group as a kind of beehive where we come together and share our accumulated knowledge, our very different paths, and the evolution of treamtents. The day by day documentation of many of our lady's stories is an invaluable resource. I can only speak for myself, but I am so gratified when a new person comes in looking for help and support and they come away with answers, and at least you know some of the questions to start asking. I did not find this site until right after my surgery, and I did not get that benefit of of other's experiences. In fact, my husband and I felt very alone in our struggle to get me the proper dx, the right doctors, the right treatment. It was really hellish until I was able to get to Mayo, and the relief that I felt when they just took over, made all of my appointments, were so kind and competetent. I wish I had known about the beehive of information here because it would have brought clarity and a roadmap for me to follow. So keep in touch and let us know what you decide. 

xxoo (trying to scrape the honey off of my glasses)

Denise 

 

Harmanygroves's picture
Harmanygroves
Posts: 232
Joined: Jun 2021

Is the "garden style" type of uterine cancer. That's what I have. Let's be clear: there are weeds in every garden, but every woman in this site has some time of cancer, and some of them are much more aggressive than others. If you must have cancer, let's hope you have endometriod adenocarcinoma. If you don't, you will be in excellent company here as we have some very brilliant and experienced women here who have the more aggressive cancers.

I am so glad that the wise elders are surrounding you. Another note: do NOT worry about what the doctor thinks about you. Worrying that a doctor will think you are a hypochondriac, especially given how much you've suffered, is NOT on the menu. Don't worry. BE ASSERTIVE.

My general physician told me not to worry, a hysterectomy would remove all the cancer, and I was worrying without need. She was wrong. Now I'm not sure whether I should gloat or be furious. Gloating suits me better, I think!

 

 

AnnieB33
Posts: 19
Joined: Jul 2021

Sounds like I should ask for D&C instead of biopsy, if the doctor will do it. My experience with my last one was that I bled so much, bp went down to 40/12, I shouldn't have heard or seen anything but I could hear the nurse was getting stressed and the doctor was saying, more epi, another epi. Took me a week to get my strength back. But yes, that was 20 years ago, so they've come a long way. But I also just found out a few months ago that I have sleep apnea out of the blue, I'm 5'3 and 120 pounds, so no rhyme or reason- why all of a sudden? So between that and the previous bp incident I'd rather not! Frown I'm sure people with apnea have surgeries all the time and I'm just being a scaredy cat. 

Thank you so much you guys, for your encouragement and advice! Wish there was a like or love button for posts Laughing

Molly110
Posts: 192
Joined: Oct 2019

My D&C was done with twilight sedation, and I was completely out of it without the risks of general anesthesia. 

 

Good luck,

Molly

AnnieB33
Posts: 19
Joined: Jul 2021

Thanks Molly - This sounds like the best plan. You don't remember anything from it? How did you feel when you woke up? Did you end up having cancer? 

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

I've experienced both good news and bad news about post-menopausal bleeding. The first time was about a year after I believed that I was finally in menopause. My PCP ordered an ultrasound right away and referred me to a gynecologist. The gynecologist tried to perform an endometrial biopsy, but I couldn't tolerate the procedure. So she did a D&C/hysteroscopy, finding and removing a polyp that was later shown to be benign. The bleeding stopped after this.

Nine years later I had another experience with bleeding. Again, my PCP ordered the ultrasound and had me see a gynecologist. This gynecologist also did a D&C/hysteroscopy because I still couldn't handle the biopsy process. This time she found what the pathology later proved to be cancer and I was immediately referred to a gynecological oncologist.

I'm glad that I had the D&C/hysteroscopy first in both cases so that the bleeding could be resolved in the first case and, in the second instance, there was no question that I would need to see a gynecological oncologist for surgery. There was never a suggestion in either instance that I have a hysterectomy without the D&C/hysteroscopy occurring first.

AnnieB33
Posts: 19
Joined: Jul 2021

Ugh, what a bummer that it came back! So this will definately be something I'll be watching for the rest of my life. Thank you for the heads up.

Frances081920
Posts: 28
Joined: Aug 2020

I too had a polyp which turned out to be papillary serous endometrial carcinoma, so yes, get it biopsied, So sorry about your problems, and maybe yours will be benign, but my OB gyn also thought it would be benign, he was wrong.

AnnieB33
Posts: 19
Joined: Jul 2021

How big was your polyp and how long did you have it? I guess it happens more than they think. Interesting that my doctor has never seen one come back cancerous, she's probably in her 50s - hopefully I'm not going to be the first!

Benign or not, whatever it takes I'm looking forward to at least having it out (and biopsied), because I recently counted how many times I go to the bathroom in one day, and it's 17x/day.  It must be pushing right on my bladder. 

Harmanygroves's picture
Harmanygroves
Posts: 232
Joined: Jun 2021

My doctor also used this "never in my career have I..." kind of language. I didn't even find it comforting when I could have, which was that very stressful time early on, the time you're currently occupying, Annie. Time is dripping slow! All you want is answers, and you so badly want to be comforted by the helpful general physician opinions and "never have I evers," but most of us are smarter than that. Science will guide the best medical personnels, not "never have I evers," and "I don't think so," and ignoring the pain and bleediing. It has been very worrisome to me that so many of the beehive (I like that!) have stories of being patted on the head by medical personnel. 

Our worker bee above mentioned that many of us are 100% in uncharted territory when we embark on this journey. "We don't know what we don't know," and we don't know what to ask. That's why the best clinics, like Mayo, like many of the university hospitals, are the best places to go to get answers. You don't need Grandpa or Grandpa Local Hometown M.D. giving you advice or "never in my career" platitudes so you don't worry. You need facts and you need the best care! 

If you worry that doctors think you are asking too many questions, or worrying needlessly, stop worrying right now! If they patronize you, move on fast!

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

I want to also say as noted, that i received my 2nd opinion and cancer care and continue to see the doctors at Mayo. This is just one of many of our best cancer/university/teaching hospital systems. There are 31 designated NCCN Member Institutions all over the country, i.e. MD Anderson, Sloan Kettering, etc. My home doctors coordinate with the Mayo doctors on reading CT scans, bloodwork, etc. so if you have a really treasured home doctor they should be happy to coordinate care. You want to be seen by doctors who have seen it all and many cases of your type of cancer. Most gynecologists are also obstetricians because delivering babies is what pays the bills. Gynecological specialities are underpaid compared to others, which also means your local gyne delivers way more babies than diagnosing cancer. I also follow on Twitter the same NCCN institutions, and their best GO docs. That is another beehive of informatiom. 

Denise 

Fridays Child
Posts: 215
Joined: Jul 2019

Your comments about most gynecologists also being obstetricians reminded me of the doctor who delivered my first child.  He loved delivering babies!  Some years later he announced his retirement, saying the malpractice insurance for obstetrics was going through the roof, and if he couldn't deliver babies he was just going to retire.  (He never had a malpractice claim in 40+ years of practice, so I don't know what triggered the hike.)

Forherself's picture
Forherself
Posts: 566
Joined: Jan 2019

Is ALL patients who were diagnosed with cancer.  All the others drift away.  And that is the vast majority.  One in ten biopsies is positive for cancer.  And if it is true that the doctor has never had a patient with a cancerous polyp, then she is merely telling the truth.    

 

Harmanygroves's picture
Harmanygroves
Posts: 232
Joined: Jun 2021

We are a skewed sample, and speaking for myself, jaded!

Thanks for reminding me of that, and also of giving our new person a heads up to that. 

MoeKay
Posts: 350
Joined: Feb 2004

According to the Q&A section of the Mayo Clinic's website:

"The odds of a uterine polyp being cancer or becoming cancerous are low. In premenopausal women, that number is 1-2 percent. In women who have gone through menopause, the risk is 5-6 percent. But even with the low risk, health care providers often will take a tissue sample of a uterine polyp for lab testing. That’s because some uterine cancers or precancerous changes of the uterus, such as endometrial hyperplasia, may first appear as uterine polyps."  For the entire discussion on this issue, see:

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-uterine-polyps-rarely-are-cancerous/

BluebirdOne's picture
BluebirdOne
Posts: 455
Joined: Jul 2018

I had two cancerous polyps, and had serous diagnosed, at Mayo, so many low probabilities that added up to a UPSC dx with cancer to polyps. Chances that post menopausaul bleeding is cancer, low, chance of UPSC, low, chances that a uterine polyp had cancer, low. So I lost the low probability game. Now you know why I never play the lottery! But it also shows that we are a rare breed. 

Thanks, MoeKay! 

Denise 

AnnieB33
Posts: 19
Joined: Jul 2021

I'll come back and let you know how the procedure went and what turned out (I really will!). 90% that it'll be benign, but then again I have every symptom, so won't take it lightly just in case. Thanks so much for the reassurance, it's always nice to know that no matter how it turns out we're not alone! Surgery is scheduled for 9/2. Hugs to all!

AnnieB33
Posts: 19
Joined: Jul 2021

I don't know what any of this means Frown

Had to have a ct urogram because of blood and tissue/clots  in the urine, painful pelvic area, and going to the bathroom 20 times a day. Pasted and copied what he said here:

IMPRESSION:

1. No urinary tract calculus, hydronephrosis or concerning mass. Incomplete opacification of a segment of the right proximal ureter.

2. Uterus is mildly enlarged with one tiny cystic focus within the left myometrium and mildly irregular endometrium. Recommend correlation with recent pelvic ultrasound findings.

So pretty much all of this has to do with gyn issues. While I wait for my gyn to answer me, does anyone know what any of this means? Assuming enlarged uterus is not good? Still waiting (Impatiently) for Sept. 2...but meanwhile in lots of pain, especially at night, so much I almost went to the ER, but held off for this test. Unable to even take a walk now because of so much pressure in the pelvic area. Is this normal? Could it still be benign? Have any of you experience this? Thank you so much for your input.

 

Harmanygroves's picture
Harmanygroves
Posts: 232
Joined: Jun 2021

I'm so sorry you are in pain. I'm not a doctor so can't speak to the section of your ureter that is opaque (can't see through it?). 

Your endometrium is the lining of your uterus. When you menstruate, if you still do that, some comes out as menstrual blood. 

Your myometrium, of course, is your uterus. 

I think every woman is built differently, and I don't know if they're deducing anything from your CT Scan, but it sounds like they are seeing a tiny cyst? Something "tiny" always sounds reassuring to me. Perhaps your doctor can help you understand this, or one of the nurses in this site can explain what the terms may imply, but it sounds like you've got the ball rolling. 

We are all staying tuned, I'm sure. Let us know if you learn more about this scan. I know that while we aren't doctors, some of the hive will know more than I do about this scan. 

AnnieB33
Posts: 19
Joined: Jul 2021

So that said then, it sounds like they could see the enlarged uterus and the thickened lining, and some sort of cyst (anyone else know what this means?)- and possibly the ureter could be being blocked by these things? If so, this what my concern was when I started having all the bladder problems, that they were connected.

I sent a note to the doc asking her if I could get in sooner. It's going to be a long, painful wait. :/

It's funny, because bleeding crazily for 3 years didn't really phase me...being told there was a benign polyp, I also brushed off. But the pain and not being able to exercise, that's what's going to kick my rear in gear to get this out!!

Harmanygroves's picture
Harmanygroves
Posts: 232
Joined: Jun 2021

You're articulate and entertaining--thanks for that, you made me laugh! Funny what motivates us to get on it, right? Bleeding crazily? you probably blamed your stress, your cycle, your ex, your....crazy and unruly uterus, the water....

 Anyway, maybe you could call your clinic and press to get in, as you mentioned. If you can, try to record what they say (get permission) so you can review later, when you're not at defcon level 3.

<3 sending love

Deb

 

 

AnnieB33
Posts: 19
Joined: Jul 2021

LaughingLaughing Whatever it takes, right? lol!

AnnieB33
Posts: 19
Joined: Jul 2021

The surgery did get moved up to yesterday. Didn't get a D&C, just the hysteroscopy with polyp removal and biopsies (due to my previous complications this is where I started). Hopefully this will be the end of it. I haven't heard from the doctor yet, so have no idea what she saw in there. Interestingly, the pain and cramping I had in the weeks prior to the removal yesterday, is pretty much gone today, so it was definitely the polyp causing problems. Now the waiting begins...

Thoughts and prayers for those of you going through the wringer today.<3

Harmanygroves's picture
Harmanygroves
Posts: 232
Joined: Jun 2021

Congrats on getting it done early!

AnnieB33
Posts: 19
Joined: Jul 2021

Thanks, and I got the results in my portal already - which it's crazy how fast they came back - benign! Two polyps, 3 x 2.5cm and 2x1cm, no wonder they were problematic.

Thanks for everything. Take care.

Harmanygroves's picture
Harmanygroves
Posts: 232
Joined: Jun 2021

Hope you never have to come back, but you are always welcome!

Forherself's picture
Forherself
Posts: 566
Joined: Jan 2019

Stay healthy!

 

Lyn70
Posts: 60
Joined: Jan 2021

Benign! Wonderful news! 

Hugs. 

Letsdothis2021
Posts: 1
Joined: Jan 2021

That is EXCELLENT news!! AND you figured out that you can be assertive and get things done when you need it. GO YOU!!

 

Take care,

Ginnie

ConnieSW
Posts: 1576
Joined: Jun 2012

I just read your "about me".  How are you doing?

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Wonderful news AnnieB! So darn happy for you!

Love and Hugs,

Cindi

alicia2020
Posts: 162
Joined: Sep 2020

I'm thrilled that you got good news! And a thread like this one will serve to assure new ladies that this is a place to come to for answers to questions, loving support, and reason to hope for good results! All very valuable!

❤️, Alicia

Spydergal's picture
Spydergal
Posts: 50
Joined: Jul 2021

Hi Annie, I'm new to all this to, I have not had a biopsy yet so I don't know for sure if I in fact have cancer. What I can say is like many others have suggested, get a second opinion. I understand completely the fear, stress and sadness your feeling. I send hugs 

ConnieSW
Posts: 1576
Joined: Jun 2012

the news we love to hear. 

Subscribe to Comments for "18mm endometrial lining"