Complex endometrial hyperplasia with atypia

I am on this journey as well. I have a history of complex hyperplasia with fibroids and polyps. I have had 4 D/Cs over a period of 12 years with negative results. After menopause my symptoms greatly improved, no more polyps or fibroids. Recently, (2022) however an ultrasound showed that I have a thickening of the uterine lining of 12.7. It was suggested that another ultrasound should be performed several months later and at this time the thickness measures 12.1 showing improvement. No explanation was given for why improvement had occurred. Another D and C for biopsy or hysterectomy was only treatment offered. In researching on my own I have discovered that there are at least 3 other treatments using progesterin that was never mentioned to me. I am finding that progesterone levels are symptoms for this syndrome or disease. It was never suggested to have my levels checked. Why is it that the cause of this issue is not even considered and why is such radical treatment prescribed? Fear can wreak havoc, I know, but please do your research and find a physician who will consider alternatives! That is where I am on my journey, looking for alternative treatment and a physician I can trust. I will keep all of you in my prayers and pray for courage and direction that leads us to complete recovery.

Dear trishh,

I am so sorry you are still waiting for clarity around what's needed after so much already! I hope you can get this new D&C set up quickly so you are not left hanging this way for TOO, too much longer. I found the waiting to be so difficult. Keeping you in my thoughts and prayers.

@linda67 I thought I would also check in with you. This must be so difficult for you as a mother. You want your daughter to be healthy and have children if that’s what she wants. And then this comes up so of course you want the very best outcome for your daughter. Has your daughter received the referral to oncology? Will you go to her appointments with her? Or does she have another family member or partner that can accompany her? How are you feeling today?

Hi @linda67, I wanted to check in with you. Will your daughter have the hysterectomy? How is she doing with this treatment recommendation and its impact? Did they discuss fertility preservation with her?

greetings to you, I am the mother of a soon to be 36 year old daughter recently diagnosed a few days ago, with the same diagnosis. they removed a couple polyps, etc. thought all would be maybe precancer hyperplasia, but not the atypical etc..recommendation is hysterectomy, also offered iud progesterin, she has no children, never married to this point anyway..lot to swallow and we are still in process as you wraping our heads around the diagnosis. just thinking for her to do progesterin for a bit, few months, then probably hysterectomy, I was about 50 developed early endometrial cancer, and had total hysterectomy, after having 2 children...I am upset very much for her, I will tell her to ask her gynecologist for oncologist referral but probably will say the same as yours...but agree with your statements...will read the rest of this website and blog, just found it....concerned mother

No CT scan, no immediate US upon my initial complaint. from my gyn despite my age and risk profile. My PMD ordered it a month latter. No ca 125, no PET scan after my diagnosis to look for active sessions. I did get a CT of the chest, abdomen and pelvis which has 2 concerning findings. That is why I requested the PET scan. My 2 friends who are being treated at the university cancer center in my area both received and continue to receive surveillance PET scans. I am on the wait list to transfer my care there after one chemo treatment. I will now have medicare and an excellent PPO so more choices. They did do blood work (CBC and comprehensive panel) and an EKG prior to surgery .

Hi drk. Looks like we will be going through this journey together! Wishing you peace and wonderful medical care a you move forward on your journey. Let us know what your oncologist recommends. I'll be curious to hear how it may differ or be similar.

I can tell you I am age 49, soon to be 50, and still having regular periods. I have always had regular periods with no real issues as some people do. I was recommended complete hysterectomy, cervix and ovaries too, as well as lymph node removal (two closest to uterus). It's the most aggressive treatment path. I have done my research and have a list of questions to go back to my surgeon with, and am seeking a second opinion from Mayo. My surgery is scheduled for Oct 17th. I'm a hot mess to say the least as this was all so unexpected, and I am concerned about long term health effects of having no ovaries, and balancing that with the risk of cancer. Sending you peace as you head into your appointment.

Christie,

Did you get a CT scan? My doctor said there was no reason to do one, and I'm disappointed in that. I would think they want as much info as possible for the surgery. I'm also getting concerned that insurance might decline my surgery without it. I had my pre-op yesterday and they were not even going to do any bloodwork before my surgery. I have no idea where my estrogen/progesterone levels are going in. I'm frustrated to say the least. All I can do is be at their mercy while I keep trying to advocate for myself.

Thank You!

Good morning,
Ask for a CT of the pelvis and abdomen with contrast. Its quick and might expedite your care and diagnostics.

All blessings,
Christine