Here we are again. It's that time of the year when for the next seven days my blog is dedicated to sharing stories about Endometriosis to raise awareness. From March 3-9, 2017, I will be featuring a different story each day.
To be honest, I wasn't even planning on doing this again this year. Trying to gather stories is hard. When I put the feelers out, many are eager to help, but some lack follow through. And because these are stories that can be raw with emotion, I don't hound those who volunteer to share their experience, strength, and hope. A friendly follow up and then I drop it. I also didn't want this to become a week of me re-sharing my story over seven days.
And then Michelle messaged me...
So, here we are - year two of Endometriosis Awareness Week on Educational Anarchy.
And, Michelle is kicking it off 😊
It has been a whole year since I last shared with you on my endometriosis story! To catch up on that you can click here and read all about it!
I reached out to Stephanie this year to see if she was planning on doing blog posts for Endometriosis Awareness this year. She said she was not sure but told her I would consider writing a follow up post from last year if she did. Fast forward two minutes later and she told me to pick a date from March 3-9. I promptly typed back and picked March 3! That date is a date I will never forget.
March 3, 2014 was the date that I was formally diagnosed with Stage 4 Endometriosis through a diagnostic laparoscopy. 3 years it has been and boy have I come a long way since then!
So what has changed in the past year? A lot!
The 3-month course of Lupron turned into a 5-month course of Lupron from February 2016 – June 2016 and it was just as horrible as I had remembered. The migraines, hot flashes, sleepless nights and forgetfulness were just as bad if not worse. The worst side effects of Lupron for me were the migraines and forgetfulness. I sometimes feel like I have permanently lost some brain cells from it!
After the Lupron, we were planning to go into our last round of IVF (as you know Endometriosis is a leading cause of infertility). Prior to that, I ended up having yet another laparoscopy that I should have never had to go through in the first place. I had an ultrasound done in June 2016 and the ultrasound tech told me I had a hydrosalpinx. I was in shock, how could I have a hydrosalpinx that I was told I had two years prior and had my tubes removed because of that? It wasn’t possible I told them. After back and forth between the ultrasound tech, my nurse and Doctor it was advised that I have a hysterosalpingogram (a test where they put dye in your uterus and see if it spills out of your tubes). So I booked that a week later and much to my dismay dye spilled through what was seen as a left tube. I could not even comprehend how this happened as I consented for having my tubes removed and my operative report back in December of 2014 said that my tubes were removed. So I was booked for a laparoscopy a week later. The tube was now fully taken out and was told I barely had any visible signs of endometriosis, but there were adhesions all over my pelvis once again which is not uncommon in women with endometriosis. Luckily the recovery was pretty easy and I was only off of work for one week. I still think back to that and how mad it made me, especially when my Doctor had no explanation on how that happened. Having a hydrosalpinx also releases toxic fluid into your uterus and pelvis that can be detrimental to egg quality and embryo implantation. It’s really hard to think back that this could have been detrimental to past failed cycles of IVF. But in my usual fashion I have to think of the good that came out of it. Better to have caught that before our last IVF attempt and before it could have ruptured in my pelvis causing intense pain and quite possibly a more urgent surgical procedure. So this totaled from 2014, 4 surgeries in just 29 months.
I still experience some pain but nothing compared to before December 2014. For pain days, I only have to take Tylenol and Ibuprofen and my heating pad is still my best friend. I had been having some tugging and pulling near my anastomosis site (where one of my colon resections was) and had been feeling like I had an obstruction. After months of me complaining to my husband and friends, I finally booked an appointment with my colorectal surgeon. What better time is it than before the end of the year when you have already met your out of pocket maximum? I had to get worked up to see if there were any signs of an obstruction and so I did have another colonoscopy and a small bowel follow through x-ray. I am happy to report that all was clear and there were no obvious signs of an obstruction that would require surgical intervention. I was so relieved. My doctor said it was likely a lot of adhesions that were causing me to feel like that and by going in that would just create even more adhesions.
Endometriosis has rendered me Infertile. However, infertility due to endometriosis does not mean you will never be a mother. Motherhood comes in many different ways, biologically, through a donor, surrogacy, or adoption. My husband and I have embarked on an Adoption journey in late 2016.
Telling your story isn’t easy. It took a lot of strength, courage, time and introspection. Was it to help me cope? Yeah maybe. To help others? Absolutely. But really if you think about it, everyone has a list of things in their life that are similar; it’s just a list you don’t want to talk about. I’m not special- I don’t have a list that is more difficult to talk about than you. What I realized is that I just have more difficulty not talking about the difficult stuff. The reason we all struggle is because that is what life is all about. We have to use these life events we have been dealt to learn how to overcome our challenges. I was motivated to share my story by hearing others stories and seeing how successful they have become in terms of their own healing.
The outpouring of support I have received since has been amazing to say the least. While it pains me to hear of others struggling with Endometriosis and Infertility, it makes me happy that my story has inspired others to share their story and that they are not alone. Many have reached out to me to talk about endometriosis, infertility and adoption.
You never know, you just might be the person that someone else needs to share his or her story and move towards success.
So when you think you cannot tell someone something about yourself, ask yourself “why not?”
“Be kind for everyone you meet is fighting a battle you know nothing about”.