top of page

Endo Don’t Care

Updated: Nov 26, 2023

Living with endometriosis is no small feat. I'll be on this trajectory of doing well with my physio and then Wabam! the unrelenting nausea, hot flashes, acid reflux, heartburn, pain increase and never ending fatigue hits and I'm wiped out for sometime. The fatigue part is way more awful then people can imagine it is. I can sleep all day and still feel like I didn't get a wink of sleep. It's like I'm this walking zombie and can't really do anything because the exhaustion is overwhelming, which is more irritating than anything.

About ten days to a week getting nearer to my cycle is when things get heightened. And lately when I've been getting my cycle, it feels like barbed wire is wrapped around my insides, making bathroom trips excruciating. There have been days where I've been keeled over in pain and am unable to stand upright or even move. My husband has had to carry me to bed. Or there have been days where I can't leave my bed and I'm just hoping and praying this yuckiness and pain will all pass very soon, so that I can carry on with my life.

I regularly see someone specialized in women's hormones and we have to regularly adjust my endometriosis medication, as hormones are always shifting and changing. Stress is a big trigger and so I always have to be mindful of that and try my best to keep any high stressors at bay ( which can be trickier than you may think!)

For those of you who don't quite know what endometriosis is, it's still being researched and not a whole lot is still known about it. It essentially is a condition in which tissue similar to your uterine lining grows outside your uterus and these tissues glob onto different organs and such, causing various types of pain. The tissues have been found on the lungs, in the brain, etc. but are mostly found in the pelvic region and can also be found on the intestines. The symptoms usually get more heightened during the menstrual cycle because of the amount of inflammation that happens at that time but it's not just a period disease, it can affect you outside of that timing as well. For me, it definitely heightens my chronic pain and sometimes makes my pain go through the roof. They are still working on the cause and as well as treatments, as there aren't many out there, and there is no cure. You can get an ablation ( where they burn off the endometriosis) or excision surgery ( which is what I've had) and they will cut out the chunks of endometriosis in you. Some women have to have multiple surgeries over time, as the tissues can keep returning. Usually when you have endometriosis you are given these options and are put on either birth control or HRT ( hormone replacement therapy) to help regulate your hormones, as endometriosis is an estrogen dominant condition.

For me, I have to keep track of my cycle and need to be prepared for what activities I can plan or attend before the week to ten days before my cycle and then during. I constantly need to remind myself to give myself grace and it's okay to have to be gentle with myself and take things easier at that time. I often miss out on a lot of things with friends and family which can sometimes take a toll on my spirit.

Endometriosis affects 1 in 10 women and can take close to ten years to get diagnosed. In many women it affects their fertility as well. They may be struggling to get pregnant, and don't often realize that it can be due to endometriosis. Endometriosis can cause intercourse to be painful, as well as afterwards for days. Most doctors don't know much about endometriosis and so finding one that understands it, is rare. And that's where specialized doctors come into play and can really help you feel validated and understood when you get referred to one.

Your period isn't supposed to be painful or heavy. It's not normal.

I've had a few doctors send me in for an ultrasound to try and detect and check up on my endometriosis. Don't be fooled by a clear ultrasound, it usually can't be seen on the scan, but on rare occasions some women that have severe endometriosis have had it show up for them. One of my ultrasound techs was doing my procedure and she said, " I don't want to come across as negative here but this is a waste of your time." She explained that her sister had tried for many years to get pregnant and couldn't. They did ultrasounds and told her she that everything was normal and so they decided to do an exploratory surgery to check things out. When you go into these surgeries there's a waiver form and it states that if they find issues with your ovaries, uterus, etc. and feel that it is necessary to remove them, that you give them full permission to do so. When I read over that part, before my surgery, I had to take some time to really be okay with it. ( Back to the ultrasound techs sister), when she woke up from surgery, she was given the news that they had to give her a hysterectomy and was told she has endometriosis, which came at a complete, devastating shock and her dream of having her own babies was all gone. The tech said that there was a happy ending to this story and her sister ended up adopting. So, if you are having issues and unexplained pain, please don't think that just because you've had clear scans that that's your end all.

Even with having a hysterectomy, they are now finding that it doesn't get rid of endometriosis and you can still have it. There is also this thing called endo-belly, which is where you get so bloated, you look pregnant. Certain foods are big triggers and the disease itself causes digestion issues, hence why the endo-belly. I had an appointment with a nutritionist that was specific to endometriosis and who lived with it herself. She explained that some women can't handle garlic or onions or other foods and you got to figure out the culprits that are causing the issues, but the major triggers are gluten, dairy and sugar.

Another interesting thing is endometriosis and gallbladder issues can be little buddies that play off one another. And I've heard more stories than not, that women that have endometriosis have had to also have their gallbladder removed or have ongoing gallbladder issues. There's a lot more to this part in my story that will all connect as I try to explain through different upcoming blog posts. As for now, 1 in 10 women to have endometriosis is pretty significant and so I hope this blog post helps educate and maybe cause you to look into and understand it better. There is a documentary out called "Below the Belt" and it follows a couple of different women and their stories dealing with endometriosis.

These are some words from a few different women in my support group that wrote what they wished people knew about endometriosis:

"Just because I look okay on the outside, doesn’t mean I’m okay on the inside. The pain ruins your life and steals your joy and this all goes on day by day, minute by minute without you even knowing. When you actually see my pain, is when things are extremely bad. It means that I’m not able to be a mom to my kids, a wife to my husband, a friend or even feel like a human. I am trying to survive and I feel lost and hopeless."

"That I'm not intentionally trying to let my family down, my illness is rough and physically and mentally exhausting. That endo isn't cured by a hysterectomy. That endo can grow outside of the female area and basically anywhere in your body.That endo is painful and causes us to look very pregnant at times so stop asking if I'm pregnant. That the pain during a flair up is literally crippling and feels as if my insides are going to fall out . I'm in real pain and not a hypochondriac. While getting a bath or shower is easy and a simple task for others, my illness makes it the most exhausting task. I might get a bath but by the time I get out and dry off, I need a nap or to rest and usually don't do my makeup or dry my hair. Endometriosis, fibroid tumors,  cysts as big as grapefruit and lemons, adhesions / scaring tissue is all painful and horrible to have to live with. If you know someone who has any of that please be nice because we are dealing with a lot."

"How it weakens the immune system and creates extreme fatigue."

"We don’t know how we’re going to feel from one minute to the next. You could be happy and pain free one minute and doubled up in excruciating pain the next, then pain free again. It’s not consistent and this unknowing, causes anxiety. Makes us worry and hard to plan things. It can also ruin special and important times. It can make us feel like hypochondriacs.

I get period type pain for days after having sex and it’s often painful during.

There have been times when I’ve not told my partner I’m in pain to not ruin it for them. Just pretend everything’s ok but in my head screaming for it to finish. So as not to hurt their feelings."

-Rebecca Duffy

"1. That you're not a flake but you just can't make plans!

2. That chronic fatigue and digestion issues are hugely linked.

BUT MAINLY that 3. Just because you look well on the outside does not mean you feel well on the inside!!!"

-Olive MacDonagh

"It needs to be recognized as a disability!!! It has ruined my life and health mentally and physically to the point of not being able to work. I’m swimming in medical bills.  I can not contribute financially and sometimes physically due to so much pain and health issues. I’ve had 3 surgeries in 7 months and the hits keep coming."

"For endometriosis to be recognized as a debilitating illness, and for proper research funding. "

"It isn't just "bad period cramps."

We are tired, all of the time from the pain we are constantly in. Because of the hormonal balance we suffer from anxiety and depression. The tissue can be ANYWHERE in our body, and cause problems with the organs it attaches it's self to. Several women are claiming disability because it is impacting their lives that much. We struggle with natural conception. It can take years to diagnose. We have to have an invasive surgery to be correctly diagnosed. Doctors like to try several things before performing the surgery. THERE IS NO CURE. A hysterectomy will not make all our problems go away. This is an incurable chronic illness."


bottom of page