Endometriosis update, February 2018
I promised to discuss my endometriosis further and keep you updated on what was going on in my life these days: symptoms, surgeries, treatment, pregnancy, etc.
So here is a quick update.
scroll down for pictures
If you follow me on social media, you might have seen that I did get my latest surgery just a few weeks back.
I tried to keep you updated whenever I had the chance, but some complications arose, and I had to get back to the hospital for a few days, and I haven't recovered completely yet. So, I've decided to take some time off before getting back to writing. But here I am!
I didn't say much about what's happened to me after the surgery nor what they found during the laparoscopy on my social media because I just thought that it wasn't the right place to do so, and I didn't want to lay these very intimate details in there. Plus some of the content might be disturbing for some.
It's very personal, and I would frankly not be doing this even on my website, but I feel like I owe this to the girls and women struggling with endo and yet can't get a proper diagnostic thus help - hang in there baby girl.
Before talking about my experience, I would like to remind you not ever to let any doctors tell you that your symptoms aren't real, or that they're "normal" and that every woman experiences the same every month. Always listen to your body and trust your gut, because guess what? Three gynecologists didn't listen to me, and all came up with different explanations and diagnosis for my symptoms. I even got sent to a psychiatrist which I believe wouldn't have helped in any way with my endo. So please, trust yourself and change doctors until you get one that listens to you and is willing to help you.
Here are the answers to all of the questions you sent me on Snapchat & Instagram yesterday 💛
How and when did I get diagnosed with endometriosis and how it happened?
I've always had a weird menstrual cycle with bad pain, but it started to become hard to deal with at the age of 16 or about, and every year worsen since then, but it was only in 2016 that it became impossible to live with. In December 2016, I had my first "episode" where I started not to be able to walk due to the pain before and during my period, and I couldn't feel anything but pain in my abdomen, my back, and it started to spread very fast from that time. I went to a gynecologist afterward who told me that I probably had endometriosis but didn't do much about it, and gave me a very strong hormonal treatment. Every day the pain was getting stronger, and the soreness was spreading, and my symptoms kept growing, so I decided to see another doctor (two others actually) before I found the doctor that operated on me and actually listened to me. I'm skipping so many details because I'll be posting an article or maybe a video in the week coming to tell you more about it.
Was I nervous about the surgery/Should you be nervous?
I personally, was more relieved than nervous about my surgery because somebody finally listened to me and was going to appease my pain.
Some of you have asked me if you should feel nervous about this procedure, and I can't answer that question for you. What I can tell you is that if you're about to go through this operation whether you do have endo or else, they'll finally be able to see your organs directly and see or search what is wrong, and accordingly make a diagnosis and help you.
What is the surgery I went through?
If you're not familiar with endometriosis, you can read or watch a video about it here.
The surgery is called a laparoscopy and is also used for other procedures. The surgeon makes a few small incisions in the abdomen to insert the laparoscope which is basically a camera, and from there he/she'll be able to see your uterus, ovaries, fallopian tubes, bladder, and other organs and with other tools remove endometriosis scarring, lesions, adhesions, or endometrial cysts.
My surgery lasted hours and went well. I had endometriosis scarring in different places: cervix, uterus, fallopian tubes, ovaries, right ureter, and bladder. On my right ovary, a "chocolate cyst"/endometrioma, which is a cyst filled with blood, that was very big and could be seen through my skin. And some adhesions, which are bands of fibrous scar tissues formed inside the body that lends them to fuse together and connect organs. The "biggest" or "thickest" was the one that "wrapped up" my right ovary, right fallopian tube, and my right ureter all together pulling on my right kidney - that was what was the most painful sensation among all others and would not stop for a minute, it was a non stop pain.
All these were removed carefully to minimize harming my organs.
The surgeon also realized a fallopian tubes patency test (dye test) after removing the lesions to test the permeability of my tubes, which thankfully went well.
Bowel endometriosis
I will talk in details about it in a video, as it would be way too long in here, but my endometriosis spread all the way up to my intestines and all the way down to my rectum. Despite my last surgery that took a lot of my pain away, this still gives me a hard time, and I'll have to go through another surgery in May.
My post surgery hemorrhage
Right after the surgery, it's normal to bleed as they touched different organs, etc. But for me, after getting home, a few days after the surgery, I started to feel a lot of pain. It was not the pain as I know it, not the endo pain, it felt different, but I wasn't too worried as I was telling myself that it might be normal after such surgery, but it only kept getting worse. I almost went back to the hospital and finally decided that I'll take one medicine that my surgeon had prescribed for me in case of extreme pain and that I'll judge from there. I still could feel the pain, but it was manageable enough. As soon as I woke up in the morning, I felt the pain I had the day before, only much stronger. It was different from all I had felt the past year. As soon as I got out of my bed and stood up, I started to bleed so bad. There was literally blood everywhere, on the floor and running through my legs and the pain was just unbearable. I was alone at home, and I knew that this was definitely abnormal and that I needed to get to the hospital right now. I honestly don't remember how I even managed to call an ambulance, give them my address, open the door so they could enter, and I immediately passed out. I woke up in hospital, and they run many tests, and a scanner which revealed that my uterus was filled with blood, as well with some other internal bleeding with lower risks.
They stopped the internal bleedings, and I stayed at the hospital for few more days to make sure it wasn't going to happen again, and then got home.
Fertility & pregnancy
As my fallopian tubes aren't blocked anymore, my uterus is clean and so are my ovaries, I might have a chance to naturally get pregnant which I'm trying to do. If I couldn't get pregnant in the next 3 to 4 months, I'll start a heavy hormonal treatment, for a few months that should help me. And if none of the above have worked, I'll start the IVF at the end of the year. But I'll hopefully won't be needing any of this!
A few days after surgery.
A few days after hemorrhage.
My tummy on a good day - a couple days after my period, so not yet close to my ovulation.
My endometrial cyst on my ovary, that we could litteraly see through my skin. I since then, had it remove (and my life's been much easier!).
Don't let me fool you, there's no position that can help relieve the pain.
I just might have thought this position conforting at that moment but it has any no way helped me go through the pain I had that day & I actually ended up at the ER a couple hours later.
After way too many times in the emergency every month, we decided to relieve the pain directly from home when the pills would not work.
I used to spend 5 to 15 days in my bed sometimes momentarily paralysed from shoulder to knee (on the right side), and connected to an IV. Ever since my latest operation, I only felt the need to take pills (anti-inflammatory) during my period.
First day home after surgery. Extreme swelling belly.
If you hate needles as much as I do, do not watch this!
Very swollen abdomen after about a week post surgery (and a month later, still swollen -not as much).
How my belly looked about a week after surgery.
Back at the hospital after my internal bleedings.
The very first day I started to feel better. Applying ice for faster resorption.
If you are going through surgery for endometriosis, you shouldn't worry much about the hemmorhage, first because you should never compare yourself to anybody else we're all different and the body reacts differently, and mostly because I don't regret this for one second, it was all worth it.
And if you have more questions you can message me here, and/or on social media.
Much love,
Joanna.