Tangled Up With Endometriosis

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I am so excited to bring you another feature on Gabbing Girls.  Tifanee is a fellow mom blogger over at Coins & Babble. She is bringing light to women who have Endometriosis and what is means to live with a chronic disease.  She also has great tips for Autism and parenting in general! With out further ado…

Endometriosis. When I first came across this word I had to google it for a definition. The dictionary in Google reads “a condition resulting from the appearance of endometrial tissue outside the uterus and causing pelvic pain.”  

Worst definition ever. It’s so much more than that.

Symptoms:

Besides pelvic pain, there is a huge list of symptoms that go along with Endometriosis. Here are some of the most common symptoms, and what they feel like to me!

Painful Periods: Not like the cramping that makes you want to eat a banana (that never worked for me anyway) and put a heat pack on with a movie. The kind of cramping that totally occupies your brain. The kind that makes you want to heat that heat pack up so damn hot that it burns your skin because maybe that will take away from the twisting, pressured, inflamed feeling. This pain starts a week before your period, and ramps up to its worst during your period, then lasts for the week after too. Oops, only one week left in the month.

Pain with/after sex: This is one of the most annoying symptoms for me. I am not one of those women who can just shop away my desire for sex, do those women actually exist?! My body and mind crave that release and closeness with my husband. If we are in just the right position, the pain during is fairly minimal, but as soon as that stupid muscle contracts for my wonderful euphoria, pain comes with it. The kind of pain that makes me curl up in a ball in our bed after with tears streaming down my face. The kind of pain my husband feels the need to apologize for and ends up feeling bad over. Not healthy for any relationship.

Pain when you go to the bathroom: I sat down 5 minutes ago to pee, yet despite me trying to relax my body, pee won’t come out. When I try to relax a little more, it feels like something inside is clenching me. Like there’s some rope tied around something and it’s just getting tighter rather than looser. If that’s what urination is like, lets not even get into the other.

Excessive bleeding: “Oh no, I went through 121 tampons in three months.” No joke, one of my friends with Endo actually kept track once.

Other symptoms: Chronic fatigue, nausea, infertility, excessive bloating…I think you’re getting the idea.

Actual Feelings

“What does it feel like?” It’s the most common question women ask. If you suspect you have Endo, you’re probably wondering this. I know it feels different for every woman because it depends on WHERE the endometriosis is growing. But, the feeling I think is the most common, is the feeling of blisters. It feels like hundreds of blisters inside your pelvis. Some of them feel like they’ve burst, and others are just rubbing against your pelvic wall and internal organs. Your pelvic wall being the ill-fitting shoe you have to wear ALL THE TIME. The best description is in the book “Stop Endometriosis and Pelvic Pain” by Dr. Andrew S Cook, he describes the full effect here “For endometriosis sufferers, it’s as if the entire pelvis is covered with hundreds of incredibly painful blisters. At best, this leads to intense short-term discomfort and frustration, at worst to years of agony and despair. Endometriosis can ruin quality of life—harming family relationships, impacting friendships, damaging careers, and straining marriages.”. You can read the forward by Dr. Robert Franklin here. If you have just been diagnosed with Endo, or think you might have it, I highly suggest this book!

Managing through life

Thankfully, I am not one of the 1/3 of women who endometriosis caused infertility too early in life. I have three beautiful children, it was a struggle to have our third and following her, I can’t have anymore. I feel extremely grateful that I could have children, but that also means that I have to care for them while I am in extreme amounts of pain and mentally and physically drained. I honestly feel dead most days. I have mom guilt to the max because sometimes, my little just lays in bed with me for the day. My husband comes home and helps around the house, otherwise, it would be insanely messy. I consider myself one of the lucky few out of the 1 in 10 (176 Million) girls and women worldwide diagnosed with Endo because I was able to have kids and my husband understands. Getting through day to day life with an invisible illness is not easy and people really don’t understand. I should be a cheery 20 something….ok, 30 something woman, who has energy and loves to go to neighbourhood potlucks and kids parties. Let’s be real, I would still hate kids parties. But, instead, I spend way too many of my days in bed and way to much time carefully planning out my errands and responsibilities. The fatigue a woman experiences with Endo is similar to that of a cancer patient going through treatment. I think that really puts things in perspective for people who don’t understand.

The worst part, there is no cure. A hysterectomy doesn’t cut it because your body still needs hormones and hormones are what cause the lesions to bleed and increase. In cases like mine, where pain cannot be controlled, a hysterectomy is what you end up with as the last hope for some relief. I feel like this is a sad end to this story, but also, a fitting one. With so many women and girls suffering from this life sucking disease, an actual solution is what we need!

T, xx

About Tifanee: