Complex endometrial hyperplasia with atypia

Hi @emmyelle
I am glad to hear your decision has worked out for you. Best wishes for your continuing good health.
I have not had a US yet. I returned from a trip to Europe the first week of June and brought back a horrible virus that took a month to recover from. In addition, I decided to find a new gyno who specializes in menopause and does not have a "treat at any cost" type of philosophy. I am so tired of doctors who use the word "cancer" as a loaded gun to scare people into treatment that is "overkill" or that people do not choose as right for them. I am soon to be 70. I walked/hiked 100 miles in 18 days while in Europe and enjoyed every minute of it. I would not want to live a life where I was unable to do that because of an unnecessary surgery or treatment that resulted in neuropathy, fatigue, etc. If I were 50, then I would probably have a different viewpoint; however, at 70, I am not interested in just existing. I want to be able to live.

I need to do more research on the IUD. I think bioidentical hormones are best. I have read negative information on progestins (synthetic progesterone). I am wondering if they make an IUD using natural progesterone. However, sometimes you have to choose between the lesser of two evils. Hopefully, the US will show the hyperplasia has receded, and I can just continue with the oral progesterone pills.

Hi @sbt19

Apologies, I didn’t receive a notification regarding your message back in May.

How did your US go? Did you have an IUD fitted?

Failing to recommend that you stop using the estradiol (oestrogen) patches is negligent, so glad to hear that you worked this out for yourself. The IUD is the most effective way to reduce the uterine lining so it’s odd that they didn’t offer it to you.

Incidentally, my Dr informed me that I won’t ever be offered HRT (oestrogen) in future owing to my history of (atypical) hyperplasia.

I’m pleased to share 12 months on and my last two biopsies have both been clear of hyperplasia and malignancy. My Obgyn said he couldn’t see any atypia during my last hysteroscopy procedure.

I am also awaiting the results of a genetic test for Lynch Syndrome, which can result in a higher likelihood of developing gynaecological cancers. It’s pretty rare though so hoping the test will be negative. In the absence of any risk factors, it means if the test is positive, I would require more regular biopsies as a precautionary measure.

From December onwards, I should be able to extend the biopsy monitoring to 6 or even 12 months and my consultant did mention that they would even discharge me typically after 12 months of clear results.

To stress, if anyone is considering this route, it could be high risk so please proceed with caution. I feel very fortunate that it has all worked out so far, however, it could equally have been a terrible decision. My latest Obgyn has been so supportive and recognised it is a bold move to proceed with the conservative path. However, others put pressure on to have the hysterectomy and frowned upon my decision.

As you mentioned, it’s important to make an informed decision that’s right for you.

Re the IUD, I felt unwell for the first 8 weeks or so but the side effects did finally settle. Symptoms included: Dizziness, head pressure/ tinnitus, nausea, mood swings/ feeling more emotional, tired and cramping so it’s a difficult 2 months.

My consultant explained that some people can be more sensitive to the progestins released by the IUD and that it can cause PMS type symptoms. I’m glad I stuck with it though as it has been very effective in treating the hyperplasia.

I hope you’re in good health and that all is well with you.

Hi Emmyelle,
I understand not wanting the hysterectomy. It is wonderful that the iud progesterone has been successful. Good for you for making your own informed decision about treatment. We are not algorithms; we are intelligent women who can weigh the options and make the choice we are most comfortable with.

My next US is in June. If my lining is still at 8 mm, I will ask about switching to the iud from the progesterone pills. I am still pissed that my gyno did not tell me to stop the estrogen patches. I made that decision on my own. She also never mentioned the iud progesterone option, either. I still do not have any type of discharge since my d & c in March of 2021, so I think I am good.

Thank you for sharing your experience. Doctors seem to default to their own preferences when recommending treatments, so it is helpful to hear from others how they have faired with alternative treatments. Medicine’s “best practices” are not always the best for every patient.

@sbt19 Hi Sherry,

I hope all is well with you. I thought I’d post an update below for anyone who finds the post.

I felt very uncomfortable having the hysterectomy and opted for regular monitoring, which is out with the recommended guidelines and not best practice.

However, 9 months since the insertion of the Mirena IUD, I’m pleased to report that my uterine lining is < 5mm and both D&C and hysteroscopy biopsies have confirmed no hyperplasia and no cancer.

My biopsies have been taken at months 4, 6 and one upcoming biopsy to be performed at month 9.

The Obgyn consensus is that if the results remain clear for 12 months, I can move to 6 monthly biopsies for a further 12 months (or more).

I wanted to post my journey here in case it benefits anyone, but to stress that the advice is there for a reason with 40% of patients with atypical hyperplasia having concurrent cancer.

As endometrial cancer is linked to excess oestrogen, I’m about to have DUTCH + testing to evaluate my hormone and cortisol levels which I hope will provide more insights and help avoid any future issues by enabling me to take action sooner.

Hi Sherry @sbt19

Thank you so much for getting back to me and for sharing your experience. Glad to hear that your colon operation was successful and that you haven’t had any complications or associated issues since.

I will go ahead with the hysterectomy owing to the concurrent rates of Stage 1 and likelihood of progression to cancer, I was hopeful there could be a less invasive approach 😔

It makes sense to consider spreading of any cancer cells too, as my Obgyn mentioned that’s why they need to be careful when removing the uterus through the abdomen. My procedure will be performed laparoscopically with removal through the vagina.

Not sure if it’s helpful, however, in relation to your hyperplasia without atypia, all the Obgyn consultants I have spoken with recommend progestin treatment via an IUD or oral progestins. I’m unsure as to why they are recommending a hysterectomy for you? Perhaps it’s owing to your medical history.

Hoping your condition improves and thanks once again for taking the time to reply, it’s been very helpful.

Hi emmyelle,
Since the pathology report showed simple hyperplasia without atypical, I have opted for ultrasound every 6 months and did increase my progesterone to 400 mg per day and stopped the estradiol patch completely. Yes, the hot flashes did return but not as frequently or intense. My last 2 us showed my lining is still 8 mm—has not decreased, but has not increased either. I have not had any type of discharge since my d & c, so I think I’m good. My gynecologist still thinks I should have the hysterectomy, but until I have discharge or my lining gets thicker, I’m not having surgery. One worry is that it seems even stage 1 will reoccur in the vaginal cuff. Since they remove the uterus through the vagina, I wonder if cancer cells may be shed there as they pull the uterus out. Another concern is organ prolapse when so much is removed. Lastly, I had a right hemicolectomy in 2016 for stage 1 colon cancer. The surgery was curative with no chem or radiation. My surgeon was excellent. I had no change in bowel habits or digestion. It’s hard to believe I even had the surgery. Therefore, I do not want a gyno surgeon going in and possibly messing everything up.
Since you have hyperplasia WITH atypical, that is a little more serious, so it might make more sense for you to have the surgery. I would rather have surgery and avoid chemo/radiation.
Hope this helps.
Sherry

Hi @grace58, @sbt19 I too have been diagnosed with hyperplasia with atypia. One biopsy result confirmed hyperplasia without atypia, the other, taken during a hysteroscopy, confirmed hyperplasia with atypia.

I have had second opinions and all are recommending hysterectomy. I had an IUD fitted at the time of the hysteroscopy procedure and my uterine lining has reduced from 11.67 to 6.15 in 2 months, which is encouraging although atypia can persist even if the hyperplasia reduces.

For the past 11 years, I have had extremely heavy bleeding and have been regularly anaemic. The IUD has resolved the heavy bleeding too.

Excuse the lengthy details, however, I was curious about your non-surgical approach.

I appreciate owing to the high % of people that have concurrent cancer, or go on to develop cancer within 5 years, why the gold standard is a hysterectomy, particularly as for EAH or EIN/ Stage 1A it’s considered ‘curative’.

Worth mentioning, I have none of the risk factors such as: obesity, diabetes, never having children nor genetic history of uterine or ovarian cancer. I am 45 years old which is relatively young for a hysterectomy.

The lack of exploration into the cause (most likely unopposed oestrogen) means there could still be an issue which could impact other areas of the body. One consultant recommended the Dutch + test and exploring BHRT (bioidentical hormone replacement).

I would like to hear how you’re getting on and to how you navigated opting for a conservative approach vs surgery.

It would be great to hear from anyone else who either opted for a hysterectomy (preserving the ovaries) or decided to reject surgery.

Feeling very apprehensive about it and don’t have a long time to make a decision as my operation is scheduled in 7 days time.

@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!