Complex Atypical Hyperplasia, Having Hysterectomy, and My Recovery So Far

It has exactly been a month since my Total Hysterectomy, and I thought I’d just add my own tales to the numerous stories about hysterectomy out there in the web. Fair warning, there’d be a lot of “girl talk” going on and I might go into a lot of details that might be TMI to some of you. So if you’re squeamish about talking about menstrual cycles, the female reproductive system, surgery and bleeding in general, it might be better to just close this window and open Netflix and watch some Brooklyn Nine-Nine or My Little Ponies.

Here we go…

The Events and Diagnosis that Lead to The Major Surgery

So about a year ago, I started experiencing abnormal bleeding wherein I’d heavily bleed for a week, it’ll disappear for a week and then have heavy bleeding again. It was either that for several months or not have my period for a couple of months. I delayed going to the doctor and having it checked because I was in the middle of getting a big project deployed, my team was really busy and I thought this ridiculous cycle was just stress and hormones doing a number on my lady parts.

I finally got myself checked last March and early April after I had an embarrassing bleeding accident while in an office meeting. Also at the time, I was already experiencing heaving bleeding for 14 days straight and there was pain around my whole pelvic area and everything was just debilitating. I was diagnosed with Abnormal Uterine Bleeding.

A series of tests were done on me: ultrasound confirmed I not only had PCOS but that after having a 4 day break, my uterus was ready to bleed out again. My doctor recommended getting a D&C to determine what was inside my uterus.

For those not in the know what D&C is, Dilation and curettage (D&C) is a procedure to remove tissue from inside your uterus. Doctors perform dilation and curettage to diagnose and treat certain uterine conditions — such as my heavy bleeding — or to clear the uterine lining after a miscarriage or abortion.

So April 20, I had my D&C. I was at the hospital early that Friday morning, the operation took place around noon and I was out of the hospital by Sunday. I was honestly more afraid of what they find in me than the procedure itself.

My pathology report came out and I was diagnosed with Complex Endometrial Hyperplasia with Multiple Foci of Papillary Atypia. At first I didn’t know what I was facing, but a quick Google gave me:

Complex atypical endometrial hyperplasia is a histologic diagnosis that falls along a spectrum of endometrial pathology. Women with this diagnosis based on endometrial sampling are frequently found to have endometrial cancer at hysterectomy.

Precancer—Complex Hyperplasia with Atypia.
Many women who have symptoms of endometrial cancer (vaginal bleeding after menopause or abnormal menstrual bleeding) may have a biopsy that shows precancerous changes of the endometrium, called complex hyperplasia with atypia.

Gee, Google… Thanks so much for such encouraging words.

My doctor first recommended hormone adjustment, but I’d have to go back every 3 months, get an ultrasound to check if things improve, get another D&C on the 6th month, if it still didn’t clear up, or if it developed into something worse, I’d need to get a hysterectomy. She also gave me the option of having my uterus removed right away although she believes I’m still too young, and then she also suggested I get pregnant now and then have the hysterectomy after if it’s still not cleared up. (uuuhhh doc, I’m single and I haven’t had a sexual partner in over a year). I had a 2nd opinion, I consulted by mother, I heard a lot of advice from friends. Believe me, a lot of people wanted to weigh in on what I should do with my body.

Two weeks after my minor surgery, I was already bleeding again, much to my dismay. It lasted 16 days. Every single day just as heavy, and as painful as the previous days.

I did my research during my D&C recovery. While I’m afraid of surgery and of losing my chance to get pregnant again, I’m more afraid of the chances of cancer. I have a 12-year old daughter depending on me, and towards the end I was walking around slumped in pain, cranky and grouchy, and looking more anemic than the days before.

Pre-Op, Surgery Day, Post-Op Mishaps

I finally made the choice to do the hysterectomy after several other options were given to me. Believe me it’s wasn’t an easy decision being only 33 and going through this, but it was the one I knew in my heart I would have the most relief with and be able to enjoy life.

I was scheduled to have total hysterectomy (open surgery) on 8am May 24th 2018, Thursday. I had to get blood packs ready, had to get cardio-pulmunary clearance, and my blood had to be monitor as well (because my hemoglobin was already low).

A total hysterectomy is the removal of the uterus and cervix.

I was in the hospital Wednesday night, I was not allowed to drink or eat starting 2am. They had be prepped early morning the next day, but due to emergencies, my operation didn’t start until 2pm. I do not remember a lot that took place in the operating room (only a few conversations with my anesthesiologist, my surgeon, and attending nurses here and there) nor the recovery room.

 

I do remember vomiting when I got back to the room. I was in the ward and the guest of the patient to my left kept accidentally rocking my bed. I also remember feeling starved. I was not allowed to drink fluids until Friday night and was not allowed to eat until Saturday morning. My stomach was empty for 2 full days. I also couldn’t stand or walk around until Saturday late morning.

I stayed in the hospital for a few more days and was released to continue recovery at home.

I was sore (still am). I easily get tired. I had to take antibiotics and pain relief for several days.

After the first post-op visit at the doctor, I had two stitches tear open because I’m stupid and clumsy and a bit careless, so I had to go back and have it checked. *facepalm* I also had vaginal bleeding again 11 days after the surgery. I kinda panicked but it’s normal according to my doctor. It’s just internal tissue changing and recovering. I just have to monitor it in case it feels and looks too frequent.

One Month After

I’m walking now and walking a lot. Although, I really give myself a lot of breaks because I still experience blood spotting and I still easily tire out.

These past days I only use the car to go out and buy things at the grocery store. I also need to be accompanied most of the time because I can’t carry heavy stuff yet. I’m not even allowed to do exercises for the time being. The only activity I’m really allowed is walking.

I tried to ride a tricycle just a few days ago. It’s still painful when it goes through bumpy roads or humps. I haven’t tried taking a PUJ. The huge step to go up and into the jeep intimidates me.

I’ve also just been cleared from cancer. The latest pathology report indicated that. Hooray!

I’m still feeling a bit sad about not being able to carry child anymore, because in the past, while I’ve been vocal that I no longer plan to have any more kids, I’ve kept myself open in case my future life long partner would want one (I use “partner” because I don’t know if I’d ever wed and actually have a husband too). Now that choice was taken from me and the long wound on my abdomen and the pain inside are cruel reminders of this fact.

This already feels like rock bottom for me. However, I can only see myself going up from here. On the bright side, I don’t have cancer, and I’ve eradicated the chances of having endometrial or uterine cancer in my future. I don’t have to keep suffering from heavy bleeding anymore!

If anyone is stupid enough to think that I am having a vacation and the time of my life ignoring work messages and calls that stress me out, shut up and have a heart. I’ve just been through two surgical procedures! One of which is a major operation!

An abdominal hysterectomy has a higher rate of post-operative infection and pain than does a vaginal hysterectomy so I know that I have to stay alert because my recovery is far from over, but I also know I made the right decision for myself.

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