Many women with endometriosis are infertile, but for those who can have kids, it can be an entirely different kind of hell.

I recently came across a post from Coins & Babble about a day in the life of a chronically ill mom. Like myself, T suffers from endometriosis. Reading about her daily struggles made me realize that my case was not a unique one. It’s one that too many mothers experience.

Without hesitation, I asked T to write a guest post for Running in Triangles about being a mother with endometriosis.

The Tormented Life Of A Mother Suffering With Endometriosis

A guest post by Tifanee from Coins & Babble

Endometriosis. It may not be a word you’ve heard before. But I know you’ve heard the word mother. Take a walk in my shoes.

The Tormented Life of a Mother with Endometriosis — CoinsandBabble.com

Endometriosis Reality

Endometriosis is a chronic condition where endometrial-like tissue is found outside of the uterus.

What happens to a woman with Endometriosis is SO much more than that though. It feels like you have hundreds, sometimes thousands of blisters on your insides. Imagine that. Think for a minute of the pain you have when you have an open blister while wearing your heels but you still have to walk in them. Now, imagine walking with those blisters covering your insides. It’s excruciating pain every minute of every day. Endometriosis causes extreme fatigue and usually a low immune system. Most of the time in the bodies of women with Endometriosis, their organs are eventually completely stuck to each other.

When you get your period, plan to take the next two weeks of life off. For the most part, you’re bed-ridden. I would like to take this opportunity to say, I have a high pain tolerance. I went through 27.5 hours of labor drug-free. The pain I experience with Endometriosis still causes me to be bed-ridden. Don’t think the women diagnosed with this horrendous illness are wimps, they’re probably some of the toughest ladies you’ll ever know. The pain is so bad, your willing to burn your skin with a rice bag just to distract from the pain inside.

Among the many symptoms of Endometriosis, one of the most talked about is infertility. I truly feel pain in my heart for those women who aren’t and haven’t been able to have children because of Endometriosis.

But today, we’re going to talk about the women who WERE able to have children…

10 Important Warning Signs of Endometriosis — .

Being A Mom With Endometriosis

Two-thirds of the women who are diagnosed with endometriosis will be able to have children at some point in their lives. For me, that was early in my life. If I’d have waited to have children I wouldn’t have been able to grow them myself.

While I would never change my three beautiful babies, being a mom to them while struggling with Endometriosis is the hardest part of my life. I feel a ridiculous amount of mom guilt to start. In one of my previous articles on Endometriosis, I talked about the fact that I have less energy than someone going through treatment for cancer. One of the hardest parts of my life has been not being able to get out of bed to be with my kids.

As a mom, especially when your kids are little, your sole purpose in life is them. Not because it HAS to be, because you want it to be. But for me, Endometriosis has made that impossible. It has ripped away moments and delights with them that I can never get back. That I will never have a chance at again. This breaks my heart inside. It makes me sick to my stomach and furious.

9 Reasons Why Mothers Don't Speak Up About Chronic Pain — .

My youngest daughter is almost five and most of our days together are spent in bed. When we play games, they are usually from my bed. She brings connect four to my bed and we set it up on the box for a steadier surface and play. It’s wrong and unfair, not only for her, for me as well.

My children go through the stress of this unimaginable illness with me. They’ve had to watch me deteriorate and suffer knowing that nothing can be done. It’s almost enough to completely break me when I think of that. But, of course, I’m a mom and I won’t let anything break me. I will struggle and suffer through torment with a beaming smile on my face to participate in field trips. I will hide the bags and tear stained face with my professional makeup so I can watch them in swimming lessons. I will build a snowman outside while I’m in agony inside.

Hysterectomy: A Chance at Freedom from Endometriosis — .

Is This It?

For a mom with Endometriosis, there is no staying in bed all week during a bad week. There is no catching up on the housework later or skipping dinner. You get up and show up no matter what. Until you face the unimaginable reality, that you just can’t. You don’t know what you’ll do, but you know you can’t do this anymore. If you have to live through this anguish for one more minute you will plunge into your despair and let it take over.

You go for tests and you try hormone treatments. You finally decide your body will never again be the remarkable body it used to be. It will no longer be a body that can support the life of another. To be able to keep any type of life you have now, you need to get rid of the organs that held and grew your precious children for the first part of their life.

Battling Endometriosis While Suffering From Postpartum Depression — .

At first, it doesn’t seem like a big deal. Plenty of women get hysterectomies. It’s not talked about a lot, but it’s absolute misery for me. Knowing that soon, my body won’t be the body I have had my whole life. I will never be able to have a precious sweet baby inside my womb. My pelvis will be dark and empty and filled with the monster Endometriosis.

This is my tormented life of a mother suffering with endometriosis.

T…

Endometriosis Resources

Endometriosis.org – the official website

Endomarch.org – The 2018 Worldwide Endometriosis March is scheduled for March 24. Get more information and donate to Endo research.

Nancy’s Nook Endometriosis Education Facebook Group – a great resource for endometriosis support and medical information

Endometriosis Support Group – a Facebook group with over 12k members offering support and advice for women with endometriosis

Hystersisters.com – Hysterectomy support and information

You wouldn’t know by looking at me, but I have suffered from chronic pain for over 5 years.

I was recently diagnosed with a medical condition called endometriosis. It took over a year, five different doctors, several ER visits, countless tests and a long list of medications to finally get an answer. In the end, it was too late anyway and I lost the majority of my reproductive organs.

And while I want to blame the medical system for failing me, I can’t deny the fact that I ignored the pain for FOUR YEARS before deciding to do something about it.

As a mother, there are so many reasons why I didn’t feel my pain was a priority. Prior to having children to take care of, I’m sure it would have been a major concern and perhaps I would have gotten a diagnosis sooner rather than later.

Here are some reasons why mothers don’t speak up about chronic pain.

1. We put others first

One of the most distinguishable characteristics of a mother is that they put others before themselves. The more people we have to take care of, the more our own needs get bumped to the bottom of the list. And ~~some~~ most days that list never gets completed. So while we might have every intention of taking care of ourselves, there just aren’t enough hours left over at the end of the day after taking care of everyone else.

Self Care Routine for a Stay at Home Mom — .

2. We don’t want to scare our children

I will never forget the fear in my daughter’s eyes when she came to visit me in the hospital, hooked up to machines and IV’s and unable to move. In an attempt to protect my children from seeing their mother in such a vulnerable state, I kept quiet about my pain around them. When they think back on their childhood, I wouldn’t want them to remember me in constant pain and not able to do anything fun with them.

How To Talk to Your Kids About Postpartum Depression — .

3. We hate to let people down

We want to be supermom, as unattainable as it might be. We want to be there for our kids and our spouses, our families and friends. We want to bake the perfect cupcakes for the bake sale and volunteer at every charitable event. We want to cheer our kids on from the sidelines and chase after them at the playground. We want to go on family vacations together. Dealing with chronic pain means we probably won’t get to do all of those things and so we push through it just to avoid disappointing anyone.

How to Reset When You're Feeling Over touched — .

4. Nothing compares to childbirth

Sure, you’re in pain, but it’s not as bad as childbirth. It’s worse if you’ve given birth without any drugs because then you’re expected to be able to handle anything. But chronic pain and labor pain are two entirely different things.

Labor pain is a right of passage with an amazing reward at the end. All mothers have had a chance to experience it in some way or another, it’s just part of life.

Chronic pain means something is wrong. It is not a welcome pain, and there is no end in sight. Add in the psychological trauma that comes along with wondering WHY you’re in pain and it’s a whole different monster.

5. It’s hard to ask for help

This rings true for most people, not just mothers suffering from chronic pain. To ask for help means putting aside our pride, which is something most mothers have a very difficult time doing. We are proud of the home we’ve kept and the children we’ve raised. We’ve got a system and routine and we can’t expect just anyone to come in and take over. If we admit that we need help, then we’re no longer in the running for supermom.

9 Reasons Why Mothers Don't Talk About Postpartum Depression — .

6. No one knows how to to do what we do

I’m not even sure what I do all day. All I know is that no one else knows how to do it. So if my husband asks me what needs to be done, I couldn’t tell him. I just get up in the morning and do what I do. I see something that needs to be done and I do it. There is no master list. There is no “how-to guide” to being a stay at home mom. And even if I wrote out a to-do list, it would probably need to be changed at least 12 times because… toddlers.

7. We’re afraid to miss out

These kids grow up so fast. We’re afraid to blink for fear of missing out on something and so taking time off to deal with our chronic pain is out of the question. As much as we want alone time, we also want to be there to experience it all. We want to see that excited expression on their faces when experiencing something new. We want to hear their hysterical laughs while playing at the park or watching a funny movie. We don’t want to miss out on our children’s childhood because of chronic pain.

8. We’ve tried all the home remedies

We are lucky to live in a world where we have so many choices when it comes to our health. If you want to know what all of those options are, then all you need to do is mention to someone that you suffer from chronic pain. Product recommendations, home remedies, naturopathic solutions, CBD oil, essential oils, vitamins, etc., are all wonderful and often welcome suggestions… at first. And we get that people want to help but, after a while, we’re tired of being targeted by those selling some type of miracle product that promises to cure all that ails us.

9. We hate being labeled

Complainers. Hypochondriacs. Unhealthy. Drug addicts. There are many people who use pain as an excuse. Those people make things much harder for the rest of us who are in actual pain. We don’t speak up about chronic pain because there are so many people who don’t understand it. It’s not just about what others think of us, it’s about how we are treated. For five years I suffered from chronic pain but was still able to do anything and everything and I often wonder if things would have been different if I was more vocal about my pain.

The cause of chronic pain is less important than how it affects your life. Many people have no choice but to speak up about their chronic pain and ask for help. But for some mothers, myself included, we are afraid to show weakness. We don’t want to be a burden. And so we keep it inside and go it alone.

It doesn’t have to be this way. If you’re reading this and felt like I was talking to you, maybe it’s time to let your guard down. Seek help and let those in your life know that you are suffering. If they truly love you, they won’t think any less of you and will want to do whatever they can to ease your pain.

Tag: chronic pain of endometriosis