Complex endometrial hyperplasia with atypia

@krisnkass I can understand your nervousness as I felt like that before I had a hysterectomy. My situation was different, though, as my biopsy done through a D & C had already shown endometrial cancer.

From what I understand about complex endometrial hyperplasia it raises the risk for uterine cancer but there are so many other factors to consider as you will read in this link from Cleveland Clinic (a reliable and valid source on the internet). There are questions you can ask the oncologist at the button of this website:

Endometrial Hyperplasia

-- https://my.clevelandclinic.org/health/diseases/16569-atypical-endometrial-hyperplasia

What questions might you ask? First I suggest that you write your questions in a notebook or on a pad a paper where you can take notes.

1) What will be removed during the hysterectomy? All of the reproductive organs (uterus, ovaries, fallopian tubes, and cervix)? If some will be removed why those organs and not others?

2) How likely is it that this is uterine cancer?

2) If you are not perimenopausal, will you refer me to a doctor to monitor and help me with menopausal symptoms?

3) When will I get the pathology results from the hysterectomy? How soon will these be available and will you discuss the results with me?

4) Are there any preparations I need to make before the hysterectomy? What should I eat or drink or not eat or drink before the surgery?

These are a few questions. Other members will provide more questions for you to ask.

Is the hysterectomy already scheduled? If so, when is it or will it be scheduled after you meet with the oncologist?

We discussed trying to preserve fertility but I already have 3 kids and have had a ectopic and struggles with fertility for a few years so I opted not to chance anything progressing. I have a lot of lower abdominal and leg pain, pain after sex, abnormal menstrual bleeding and have been struggling with very severe iron deficiency, so hopefully this will positively affect my quality of life. I also have a strong family history of reproductive cancer so this made the most sense for me.
It’s tough because I’m 35 and it just feel surreal that this is a choice I needed to make.
I’m sorry that you’re dealing with this to!

I have just been diagnosed as well and feel your pain! I have an appointment with a Obgyn Gyno Oncologist on the 22. Did your doctor recommend you have the surgery right away? Do you have any idea how you got it?
My thoughts are with you and thank you for sharing!

I am 35 and was diagnosed with complex endometrial hyperplasia. I have opted to have the hysterectomy as I have 3 wonderful children, my oldest is 15 and my youngest is 9. I’m very nervous. I was referred to an oncologist who I meet in two weeks. Does anyone have any advice what I should be asking and ensuring gets done prior to the hysterectomy?

Hi Grace,
My journey started after menopause. I was on HRT (.0375 mg. estriol patch and 200 mg. progesterone to prevent the endometrial lining from thickening. After on this therapy for 8 years, I started having clear discharge. The ultrasound showed 12 mm thickening and a small uterine polyp. Had D & C in March of 2021 and the biopsy results were simple hyperplasia without atypia and the polyp was benign. The doctor increased the progesterone to 400 mg. but a year later my lining was 7-8 mm thick. The doctor wanted to do another D & C but I said no because my husband is suffering from the aftereffects of COVID (pulmonary fibrosis) and I am his only caregiver. I must drive him to doctors' appointments, PT, and pulmonary rehab. He also needs assistance with his daily living activities. I did not want to have to recuperate from general anesthesia for several days. The doctor was also trying to convince me to get a hysterectomy. She tied to scare me by saying this will turn into cancer. However, that is not what my research shows. Interestingly enough, she did not advise me to stop the estrogen patch. I have started cutting the patch in half with no return of my hot flashes (applied twice week). I did try to taper down to one half patch a week, but my hot flashes came back. I would explore the progesterone therapies before electing more surgery. This is usually a slow developing cancer (even if it ever developed into cancer) so just keep a watchful eye.

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