Tuesday, March 21, 2017
Lent gifting day 21 + Endometriosis Awareness Week
Its Endometriosis awareness week and I thought I would share my story. The reason I want to share this is because it might help another woman know she is not alone. Alternatively it might help a friend or a loved one of someone suffering from Endometriosis understand how turbulent and confusing the disease can be.
So what is Endometriosis? "Endometriosis is most often defined as a chronic gynaecological condition, where endometrial-type tissue grows outside the uterus...If a woman hasn’t fallen pregnant by the end of her menstrual cycle, the tissue lining her uterus sheds (the period). In women with endometriosis, it seems the tissue located outside the uterus also bleeds and swells. Lesions, cysts and nodules can develop, often causing severe cramping, bleeding and pain.
My story: I don't remember when I was first diagnosed with Endometriosis but I had my first surgery for it in 2008. The gynaecologist burnt it all out and removed a cyst on my ovary at the same time. In 2013 I had another lot of surgery to burn out what had grown back. Since then I've had a never ending string of complications and problems. I bled for 2 years straight after the surgery. I have had crippling pain that would have me curled up in the foetal position every night after work regardless of what time or the month it was. I would take copious amounts of pain killers and use heat packs to ease some of the pain. But it just didn't work.
One of the only things that had helped me is a change in diet. Because my bowel had adhered to my ovary post surgery and my uterus had shared the Endo with the ovary (such a sharing caring body), every time I eat gluten and most other grains it feels like glass shards moving through my abdomen.
Thankfully I've learned not to poke the bear. It's easier to avoid grains than deal with Endo Pain. It's easier to be "fussy" at restaurants than spend an evening in the foetal position on the floor begging for someone to cut out my uterus. I think I've attempted to sell it at least a dozen times. But thankfully no takers.
I want to have kids in the future. But doctors at the public hospital told me that by 2 years after my 2nd surgery I wouldn't be able have children... the deadline of which was 2 years ago. So I may have lost my chance to have kids, according to those doctors.
Apparently I needed to have a baby to get rid of Endometriosis. I'm sorry but NO. I will not bring a child into this world just on the off chance that I might get rid of a chronic condition. Even then it doesn't always work. Plus that is a hell of a commitment to do on your own FOR LIFE without the support of a loving husband or even a loving boyfriend/Fiance.
I am going to an excellent gynaecologist now who has told me that when I am ready to have kids he and an Endometriosis specialist will do surgery to remove as much of the Endometriosis as possible before I can even "try" for babies. Then I probably have a year gap in which to get pregnant before the Endo grows back. But I was also told that if I had 3 kids already they would have just taken my uterus out because its such a trouble maker. It doesn't help that every time I visit the gynaecologist he wants to know if I've found a good man yet because the sooner the surgery, the sooner I can get pregnant, the more chance it has of working (or at least that is what is implied). Which is so stupid and something I take with me into every romantic relationship I begin or want to being. I don't want to have the Immediate pressure of having children put on me and any special man in my future. How can love even bloom with that kind of pressure? It would feel like I was saying..."We need to have kids... AND we need to do it, yesterday! Either get on board or get out." It don't think so. It's not fair to ask for that.
I don't want anyone to go through the kind of shit I went through/am going through. But I also know there are so many women out there that are going through a version of this. Women who haven't been as lucky as I have. And I know It sucks. It really really sucks!!!
I am grateful that there are awareness campaigns going on at the moment because maybe then someone who is around a person with Endo might understand. They might have more empathy. Might be a little less agitated when it takes me 20 minutes to read a menu or have to change restaurant 4 times to find something...ANYTHING... I can eat to avoid ending up in pain. Or they might understand when I choose to eat something I shouldn't because it is the 5th restaurant and I'm just so darn hungry... even if that means for the next 2 -4 days I will be dealing with the consequences.
It might help when I have to cancel on a friend or not go to a function because I unintentionally ate something that I shouldn't have. Or I should have double checked a food item when it was always fine before. I'm looking at you IKEA meatballs 😢. (It seriously broke my heart learning the hard way that the IKEA Meatballs have wheat in them). They might even understand when the gluten free thing they made with rice flower will still have consequences for me, so it's not intentionally a slight it I say no.
Endometriosis. It's messy. It painful. It's complicated.
What does Endometriosis have to do with the Lent Gifting game? Absolutely nothing!
But it does have a very tenuous link to kindness. You see, I was recently reminded that sharing your story can help other people deal with their own stories in life. It can help people know they are not alone.
I appreciated knowing that I wasn't alone when I was going through my worst days. I knew there was always someone going through worse and I could help those going through better times too. We all support each other to stay strong when all you want to do is grab a carving knife, cut out and sell your baby making station on EBay. Not that I ever actually did it but I couldn't say I hadn't thought about it. I did.
I also believe I have greater compassion for others going through chronic illness. I know what I was like during my worst times. It wasn't pretty. And compared to some people I know... I have it easy!!!!
I have friends with Colitis, spinal damage, Fibromyalgia, M.E., Diabetes, Depression, Morbis Pompe, Anxiety, Bipolar and that's just some of my closest friends and family. I have lots of friends with other diseases and conditions that affect their daily lives.
I like to think that I am better equipped to communicate with my friends on a more genuine, compassionate and kind level. And if not, I hope they tell me so I can improve! But I know they will call me out if I really do or say something insensitive, as I have accidentally in the past. I'm human and it happens.
But do you know what? Each of the people suffering these diseases have taught me so much about what it means to live life to the fullest right now. How caring for others is great but if you don't look after yourself you can't do anything for anyone else at all. I've learned that life is short and that we need to embrace the time we have. I've learned life isn't fair because the worst shit happens to the nicest people. I know that loving someone with a disease means you get to see how much they mean to you right now. They hurt, so you hurt.
I have learned the true value of kindness. Checking in and making sure they are okay or sending a message to let them know they aren't alone. Looking for alternative ways to spend time with them so that neither of you wear out so fast (like just hanging out in PJs all day watching movies). Knowing that sometimes they just don't have any spoons left to make food.
Spoons?! Why am I talking about spoons you might ask? Well I heard this amazing story about spoons when explaining chronic illnesses and I thought I would share a brief over view here. The link is from Pinterest and saved to my Kindness Ideas page
The website at the bottom of the graphic can help you read the full story which is well worth it.
So I am a "spoonie" along with many of my friends. But thankfully recently I've been having 20 spoons instead of 12 so I can get infinitely more stuff done. I'm so lucky to get given extra spoons. So lucky I've learned what my body needs to avoid to get more spoons.
Oh... I almost forgot my donation for lent gifting.This seems particularly appropriate today. I'm sending this photo to all those who need extra love today. No matter if you are a "spoonie" or not.
Endometriosis is not something that will magically go away but I'm managing the best I can and I celebrate NOT having pain which is happening more regularly. It's awesome. I also know that there are lots of women with Endo who don't have that relief I do. And they haven't found something that works for them... YET. I have hope you will find something. So to my Endo Sisters, here is a little love. Pleas know you are not alone!