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Simple endometrium cystic hyperplasia w/o typia: What to do next?
In 2010, I got my first IUD (Mirena) placed and had no complications. I had it removed in 2014 so we could try for a baby. I had a new Mirena put in right after the birth of my daughter in 2015, and again, there were no complications. However, in 2020, when I went to have it removed and a new one placed, they couldn’t get the Mirena in and tried Kyleena instead. I stuck with Kyleena for two years, but I experienced constant periods every 20 days, and they were very heavy.
My doctor agreed to remove it in 2022, and we tried the Mirena again. However, I began to have more cramping and pelvic pain, which mainly stayed on my left side. In August 2024, during my yearly exam, I explained the pain to my doctor. She scheduled me for an ultrasound to check if my IUD was placed correctly. I had the ultrasound in November, but my pelvic pain continued to worsen.
I scheduled an appointment with my GYN, who shared that I have a retroflexed uterus and suggested this might be the cause of my pain. We decided to remove the IUD. I went back two weeks later, thinking the pain had improved, so he recommended an ablation and tubal removal. Unfortunately, the cramping and pain returned during Christmas.
On 12/31, I went in for surgery and explained the pain I was still experiencing, even though I hadn’t gotten a period. My doctor didn’t think the ablation would address the pain, so we proceeded with the tubal removal, and he also checked for endometriosis but found none.
Now, I feel completely lost. I’m starting to feel like I’m going crazy because every test shows no reason for the dull cramping pain I experience at least twice a week, sometimes more. I even asked about a hysterectomy, and my doctor was on board to consider it at another time. However, I’m not sure if that will happen now since everything looked normal during surgery.
Has anyone else ever gone through something like this?
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On the 31st, I had my tubes removed and due to not being able to perform an endometrial biopsy In the office due to a cervical stenosis, the doctor performed that while I was under as well. I have a retroflexed uterus and have been experiencing lots of cramping and pain on my lower left side. My doctor was thinking it was due to the placement of my Mirena IUD (I have used this BC for 12 years) and now my uterus was shaped.
I got the results back from my biopsy and it says that I have Proliferative endometrium with simple and cystic hyperplasia without atypia. When I was looking online about different treatments the main one was having an IUD, but I’ve already had that for 12 years and still experiencing pain. Has anyone been diagnosed with this, What treatment plan worked best for you?
@wdk1015, I merged your two discussion into one. I found it helpful to read your story in one place. I'm tagging fellow members like @misty51 @kforrest @diana270 @angie145 @janoh who also have experience with endometrial hyperplasia and can share their stories.
@wdk1015, any update? What treatment plan has been recommended for you?
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1 ReactionYes, after 2 and a half days of some very heavy bleeding that had me changing super+ tampons, a pad every hour for over 8 hours and that still didn't stop the blood. I went to the doctor and they determined that the best course of action would be a hysterectomy. They also diagnosed with adenomyosis which would explain the extreme cramps and pain I have/had been having. They put me on progesterone to help with the bleeding but want that to be short term fix to hopefully get me to June when I am done teaching.