Something that I have noticed growing up with Endo is the amount of pain my Endo can create for those who love me. It is hard enough to have a disorder that has no cure; let alone have the most severe form of that disorder. No one can really tell you how to deal with it because they simply don’t know.
A lot of having Endo is using the stories of others to help guide yourself through your own personal journey – full of twists and turns, and ups and downs.
Endo is a very personal experience; you seem fine on the outside, even though you are constantly in pain. No one has any idea that something is actually wrong because you get so use to the pain that you don’t show it. The only time it is obvious is when you are flaring up and at that point the pain is so severe you want to curl up into a ball and stay in your bed…forever.
Because it is such a personal journey, it can sometimes be really difficult to think about how your disorder is affecting those around you; more specifically those who have love for you. Quite honestly, sometimes you don’t want to think about how it is affecting those around you because you are so miserable. But at the end of the day, these people love you and watching you go through such pain, in turn, causes them pain.
With all of this being said, my wonderful and charming husband has been by my side through the rough patches of my Endo journey. When we first started dating I was just having my first real flare up and I had to share my secret of Endo with him, as well as the fact that I struggle with fertility because of my Endo…we were only dating for three months (yikes). But I felt it was important to be honest with him because we were serious about one another. Over three years later and he is now my husband; my husband who has had to watch me go through these challenges unable to do very much.
He always talks about how for him, the hardest part is not understanding the pain I am in as well as feeling helpless. These feelings of helplessness mixed with a lack of understanding can become very frustrating and ultimately can really create some wear and tear on a relationship.
The best way I can explain it to him is it is the feeling of a horrible stomach ache, mixed with getting kicked in the groin, mixed with an echo of an ache that goes on forever. All three of these sensations are fleeting; and because of that it creates a level of exhaustion that you just can’t shake. (If you’re reading this and have a better way to describe your pain, please let me know in the comments below!) After I explain the sensation it is also about helping him understand that the pain is constant. For people who are not in constant pain this is a hard idea for them to wrap their brains around; and it is important to remember to be patient.
Now let’s get honest; when you have Endo and you are flaring up one of the last things you are going to want to do is have sex. At least that is how I feel about it. Yes, “my mouth works”, and yes, “my hands work”. But you can not honestly look me in the eyes and tell me that minimally, if you were kicked in the groin you would be in the mood to do anything with your mouth and hands. It’s the same thing…except way worse. This is the part in the love triangle where you have to help your partner understand that this is deeper than sexual pleasure and more about you than it is about them.
This is a hard lesson to learn and it definitely took my husband and I for a loop when we were first starting out. A hard concept to grasp is that women are just as horny as men (GASP) but society has made it okay for men to be overly vocal about it, and women to feel ashamed. With that being said, it isn’t the fact that the lack of sex is because I don’t want to; it’s because I can’t. This is a huge difference, because one is being able to, but choosing not to (which is totally fine), and then other is being literally unable to do so.
To anyone out there, who is in love with someone who has Endo, please try and understand that difference. My husband and I have gotten in many arguments about this, because for a lot of people they feel that being rejected from sex is the same as being personally rejected.
I can not express the extent at which I love my husband, he is literally perfect and I do not know…nor will probably ever figure out how I was able to marry such a wonderful human being. When I say “no” to sex it is because I am saying that “sex is going to cause even more pain” and I just can not handle that. I’m not saying no to him; and that can be hard to distinguish.
And ladies, do not feel or get trapped into the cycle of having sympathy sex because you feel bad for your partner. Because you will not enjoy it, it will leave you feeling more pain than when you started; both physically and emotionally. Ultimately all you can do is reach common ground on the topic and be patient with one another.
The Good Days & Bad Days
Like any other relationship, you will have good days and you will have bad days. What most people don’t understand is that Endo will play a large role into that relationship because more often than not my Endo is what is determining if I’m going to have a good or bad day.
Some days I am perfectly fine and pain is minimal and I go about my life. Other days, I am in so much pain all I want to do is take some pain killers and sleep the day away. And other days, I’m right in the middle, but I get these thoughts of not understanding why I have this disorder as well as feeling like an inferior woman because I have this disorder.
Ultimately, we are doing the absolute best that we can. It is okay to feel all of these things, but I also have to remind myself that what I’m feeling is normal and that everything will be okay. Endo is so much bigger than we are, and I wouldn’t have made it this far if it wasn’t for the love and support of those around me.
Stay connected with Haley via twitter @heyleebird
If you are a woman who is a gladiator to Endometriosis or a similar illness that would like to spread awareness through your story please e-mail Haley at firstname.lastname@example.org
I am not a medical professional by any means – I am merely someone who has lived with Endometriosis for the past decade. Through my experience I am hoping that I can help all of you. For more information on Endometriosis click here.
This article completely applies to our friends in the LGBTQ+ community; I want to acknowledge those who may be in a relationship other than a straight-cisgendered one and who still face their own struggles with Endo. I am simply speaking from my own experience. xx