By Arielle Denise Dance, M. A. in Women’s Health
In life we, as women, take many journeys: the journey through education, career decisions, through relationships and family transitions. Throughout all these journeys there has been someone (or more than one person) who has supported us, encouraged us and held our hand through the process. Some of these journeys presented obstacles and hurdles we did not exp
ect and made us grateful for people within our support systems.
For millions of women living with endometriosis, the incurable and painful disease that occurs when tissue from the uterus is found in other places of the body, a new journey is required of them and their support system. This journey is unexpected for most and can cause a shift in many of their relationships, and friendships.
A Walk in Her Shoes
Let’s put ourselves in the position of a woman living with endometriosis. You’ve recently had your first surgery that diagnosed you with endometriosis. Your parents stayed with you in the hospital and took notes on everything the doctor said. They looked up terms like “endometrioma”, “ovarian cyst” and “infertility”. Your parents brought you home and catered to your every need; being patient as you absorbed the news of being diagnosed with a disease you weren’t very familiar with. As you absorbed the reality of this disease you became overwhelmed and angry, you often misplaced your anger and geared it towards your parents. They never blamed you for this hostility but became concerned that you were not coping well.
Your gynecologist recommended taking Lupron shots that put you through a menopause-like state (causing mood swings, hot flashes and a host of other side effects). You began this treatment plan, praying for a cure for an incurable disease. Your partner (boyfriend or girlfriend) has been very supportive throughout your journey (even before this pain was labeled) but because of the hormones in your medicine you are moody and bleeding irregularly. You aren’t up for company tonight and wish your partner would stop being so clingy.
Your best friend kept calling and asked what she can do to help you before the fall term resumes. You didn’t want to hurt her feelings but you weren’t in the mood to talk to anyone. You kept replaying the nights she took you to the hospital for the unexplained cramps and vomiting and the nights she’d stay up with you as you cried about your pain. You were grateful for her support but then you remembered her saying “It’s just cramps. Get over it, girl. We all get them.”; you continued to ignore her calls.
Consider: How do your partner, parents and best friend feel— angry, frustrated, helpless? What sacrifices are they making for you–financial, emotional, time? Those around you are impacted by your actions (this is known for someone even without a chronic illness). How you treat people is very important… especially those who care about you and are willing to support you.
Let’s continue. You returned to school, where you are studying dramatic arts. You soon realized that your body is not quite what it used to be and you get tired quicker, experience abdominal pain when you stand for too long and have trouble focusing in class. You’re worried that these new post-operative symptoms will put you behind in your school work. But what do you do? Should you tell your professors or consider taking time off? Friends and professors ask if you’re alright and are concerned about the shift in your behavior. You want to talk to someone but you do not want to be judged and are not up for explaining this complicated disease to those around you.
Consider: When should you disclose to someone that you have a chronic illness? When is it necessary and when is it merely voluntary? Knowing your resources is essential. For example, on a college campus utilizing the Office of Disability Services could be your saving grace in a situation like this. Although you may not consider your disease disabling, the office can help communicate with professors for accommodations and extensions. But remember, you are not obligated to share your medical information with anyone until you feel comfortable or it is medically necessary.
Consideration and Learning
What have we learned from this brief moment in the shoes of a woman living with endometriosis? We recognize that sharing health information is private and often takes time. Having endometriosis puts women in a constant position to educate those around her. Sometimes she will educate friends, family, strangers or even medical providers who aren’t as aware of the disease. Although the discussion is difficult to have at times, speaking openly about endometriosis and pelvic pain may help someone in your life.
We recognize that loved ones who support the woman with endometriosis can be impacted by the disease as well. For those in a support system there is a strong desire to help and care for the person who is suffering. Unfortunately, allowing others to take care of us and support us is something many women struggle with (even those without a chronic illness). Being able to communicate with loved ones about how you feel (physically and emotionally) can help them care for you the way you want. Let them know what hurts, how you’d prefer to be cared for and let them know they are appreciated.
More Information
For a more intensive understanding on how endometriosis can impact adult relationships and family planning, see Arielle’s video blog entry on this subject. Her video blog channel is full of videos about endometriosis and various ways it impacts women’s lives. This article is partly based on research Arielle has been working on and will continue.
For more information on endometriosis and adolescents, consider this article by endometriosis surgeon at the Center for Endometriosis Care.
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Seriously! You’re blog is so informative for this “taboo” subject. I have a couple friends that suffer from endometriosis and will pass your link there way!
Thank you Cynthia. Your support in sharing our site is greatly appreciated!
This is eye-opening. I didn’t know what endometriosis was before reading this. I think it’s a helpful and well-written article for those living with it, and for those who aren’t. Thank you for sharing.
Glad you found the post informative. Thank you for visiting!
You are beyond a powerful women in my eyes. Your blogs continue to open my eyes about the incurable disease. My girlfriend suffers from this disease, and this just gave me more insight as to how to care for her, and communication being key with a relationship and dealing with someone with Endo so it does not consume the both of you. I appreciate your blog and will definitely continue to read and follow.
That was a very well thought out and extremely informative article!! Endometriosis, I believe, is one of the most misunderstood conditions and you handled it brilliantly.
Thanks for sharing this article. I will be sharing this with some friends.
Thanks for visiting!
I have this stupid stupid STUPID disease and I too, find its a very taboo subject. When people hear the word disease, they think you’re dying, and then when you explain to them what it is, they get extremely embarrassed when they realize you’re telling them about your reproductive system. I’m lucky to have an online friend I can talk to for support. I was talking to her this morning and had a lightbulb moment. I’ve heard reports of women having less painful periods when using cloth menstrual pads. Is there anyone out there
Sorry, on my phone and I accidentally submitted my comment before I was ready.
As I was asking, is there anyone that has experienced any relief after using cloth pads instead of the paper chemical filled ones at the store?
Thanks for visiting Kristen! While every woman is different, we can say many women do report less pain with their periods and/or less irritation and sensitivity with cloth and organic (disposable) pads. Please feel free to contact us with any questions. Always happy to help!
Just wanted to definitely throw in that when I first created my blog and related social networks that coincidentally, it was women who had endometriosis who took the time to be befriend me/provide feedback on my articles and tweets. It was really touching and quite honestly, before I started my blog, I wouldn’t even have known what endometriosis is and even today, I admit I probably know only the tip of the iceberg when it comes to that!
With that said, further to my previous point is that those who have experienced/still experience Endo whether directly or indirectly seem to be much more open about menstruation and female reproductive health. That’s not to say there aren’t non-Endo women who aren’t open about their body and periods, but I can definitely say for myself that the number of women who have expressed their willingness to contribute to my every day learning just happen to be be individuals with/had Endo.
Being able to make the best of a situation really makes me smile. It’s lovely that something like this can help one women form a connection with another and particularly to like-minded individuals like me who strive to learn about the wonders of the female body and learn ways to cherish and love it just as women should themselves! I really appreciate all the resources I read from period-related blogs, articles, anecdotal recalls and of course to all the Endo-experienced women who open up to others to help educate, inspire and exhibit bravery against Endo. I can definitely attest that I’ve participated (though non-physically) with some of the women I’ve come to meet via the internet and followed through their journey of pain, diagnosis and treatment myself and it has been a great learning process for myself and it turns out they admit they’ve found it much easier to talk about more personal matters than before!
I have this horrible painfull disease and this article could not explain it any better for me. I was diagnosed when I was 15 years old through a laborscopic surgrey. I am now 17 today and my pain is much worse . It has impacted my life dramatically ! I recentlly droped out of school at 16 because it was hard for me to just sit there because times a lot of times my stomach would hurt so bad alls I could do is cry and position my body in a ball. A lot of other females tell me its just cramps girl woman up , but only if they felt the pain that I feel every day of my life. Endometreosis is a horrible disease I would not wish it on any one!