There’s a statement that you never imagined saying, but somehow, you end up saying it. They don’t sound real, but they are: It has been a month since my uterus and I literally have parted ways.
I thought I’d just add my own tale to the numerous stories about complex atypical hyperplasia and hysterectomy found out there in the web. I don’t know, maybe it’ll be useful to someone out there.
Now before I continue, fair warning: there’d be a lot of “girl talk” and I might go into a lot of science and 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.
You still here? Ok, here we go.
Let’s go back to almost 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 didn’t have it checked back then because I thought this ridiculous cycle was just stress and hormones doing a number on my lady parts. I was in the middle of getting a big project deployed, my team was really busy, and my stress level was just off the charts.
I also didn’t have to worry about being pregnant because I have been completely single since May of 2017. I have not met anyone new or dated or slept with anyone since, andlet’s face it, I’m not highly eligible for immaculate conception.
Diagnoses, Tests and Minor Procedures
— April 2018
ANYWAY. I finally convinced myself to have it checked early this year. 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 also had an embarrassing incident at work where as soon as I stood up from my seat, blood just gushed down my legs as if a faucet was left open when Maynilad decides to turn the water supply back on. First diagnosis I got from my OB was Abnormal Uterine Bleeding (in retrospect, it obviously is that).
We had to wait for my period to stop before we could do further testing. So then on the 4th day that I was no longer on my period, the ultrasound confirmed that not only do I have PCOS but that even after only resting for 4 days, my uterus was ready to bleed out again anytime soon.
Unfortunately, there’s no way to definitively figure out what is my uterus’ problem without a biopsy. So the doctor ordered for a D&C.
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.
On April 20th, 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. Coincidentally, I’m pretty sure that is also a very long spell in Harry Potter but if you Google the same words will give you:
Atypical endometrial hyperplasia is a precancerous condition that can develop in the lining of the uterus (called the endometrium). It is an overgrowth of abnormal cells, or it can develop from endometrial hyperplasia, which is an overgrowth of normal cells. Sometimes polyps that grow in the uterus will have atypical endometrial hyperplasia.
Atypical endometrial hyperplasia is not yet cancer. But if it isn’t treated, there is a chance that these abnormal changes may become uterine cancer.
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. Risk is high that 25 to 50 percent of these women will go on to develop endometrial cancer.
Gee… Those results are so encouraging and so comforting!
My doctor assured me it wasn’t cancer yet. She first recommended hormone adjustment. But it can feel a little daunting when you consider the prospect of needing to go back every 3 months for vaginal ultrasounds, getting another D&C on the 6th month (if it still don’t clear up), or if it developed into something worse, I’d still need to break up with my uterus. 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.
I was undergoing hormone therapy right after the D&C procedure so that in 3-4 weeks, I should get my period. Unfortunately, it has only been two weeks and I was already bleeding again. It’s too soon. The medication was not working.
My period lasted 16 days. Every single day just as heavy, and as painful as the previous days. *sigh*
While all this was happening, I did my research. I considered and reconsidered. And 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 again.
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 monitored as well (because my hemoglobin was already low, not alarming YET, but still low).
A total hysterectomy is the removal of the uterus and cervix.
I was in the hospital Wednesday night (May 23rd), I was not allowed to drink or eat starting 2am. They had me prepped early morning the next day. My scheduled operation was 8am, but due to an emergency operation my surgeon is involved with, my op was bumped to 10am. Then again another emergency surgery had to be performed with my doctor needed (she was the best OBGYN surgeon in that hospital) WHILE I was already being wheeled to the operating room. My operation didn’t start until 2pm, or so they say, I was already drugged up all morning. 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) and I seriously don’t remember the recovery room.
I do remember vomiting when I got back to the room. I was in the ward and a guest of the patient to my left kept accidentally hitting my bed and I got nauseated of the rocking. 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 (I still am). I could not sit up for a couple of days. 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. It didn’t look like fresh blood too so I just have to monitor it for when it feels odd and it has become too frequent.
So it has been a month…
My uterus and I have not been in contact for a month now. No phones, no nothing. The only news I ever got about my uterus was that it tested negative for cancer. The break up can be considered amicable. 😅
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’m also required 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. So I walk this empty street on the boulevard of broken dreams. Where the city sleeps, and I’m the only one, and I walk alone. I walk alone, I walk a…
*thumps and hums Green Day’s song*
Seriously though, 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’m still feeling a bit sad about not being able to carry children 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 for when 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.
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! All this gives me a bit more comfort that I made the right decision for myself.
PS. If anyone is stupid enough to think that I’m on a vacation and having the time of my life while 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 “open” hysterectomy also has a higher rate of post-operative infection and pain than a laparoscopic hysterectomy so I know that I have to stay alert because my recovery is far from over. Now if you’ll excuse me, I am feeling the need to take a nap after this long story telling.