I wasn’t sure if I was going to write a blog on this topic, because it’s very personal, very vulnerable. But the more I thought about it, only good things can come from sharing my experience and educating others. Maybe even help other people understand, that are partners, family, friends, coworkers and even strangers. I am not a health care professional. I am simply a person that wants to share her experience in order to help and educate others.

Endometriosis (en-doe-me-tree-OH-sis) is a disease in which tissue similar to the lining of the uterus grows outside the uterus. It can cause severe pain in the pelvis and can affect fertility. Endo has been found on every major organ in the body. The tissue found outside of the uterus is still affected by hormones on the menstrual cycle, however it can’t be expelled from the body (like a normal menstrual period) which can lead to inflammation, lesions, adhesion’s of organs fusing together, cysts, and scar tissue. It’s commonly mistaken as a “bad period”, it is NOT and I’ll shout it from the rooftops. It’s a chronic condition. It affects up to 10% of women, yet the funding and research does not align with how many people in our population this affects (especially in comparison to men’s health funding but we’ll save that for another time).

There are 4 stages of Endometriosis – the level of Endo does NOT necessarily correlate to the amount of pain that a person may experience. A person with stage 1 can have extreme pain, while a person with stage 3/4 can have minimal to no pain. It takes an average of 7 – 10 years to get diagnosed with Endometriosis. Can we pause to think about that for a moment? That is a very long time for women to be suffering and having no answers. Doctors do not know the cause of Endometriosis, and there is no cure.

My story started several years ago, when I went to my female dr’s clinic to get my IUD replaced. The one I had was discontinued, so I had to get the next closest one to what I previously had. Now I’ve always been sensitive to hormones, so I was a bit nervous about trying something new, but I didn’t really have a choice. An IUD had been the best form of birth control that I’ve used (though VERY VERY VERY painful for the procedure, worth it for the 3 – 10 years, depending on which one you get in my opinion). And that’s the moment when things changed.

I’ve replaced my IUD before, so I knew what (pain) to expect. But something was different this time, and something felt very wrong. My replacement happened on a Friday (which I took off from work), so that I could take the weekend to rest and feel better by Monday. By Monday, I was in agony. I was in so much pain, I could barely walk. But I didn’t have any bleeding. I called the clinic, I felt like the IUD wasn’t placed properly, or it shifted or SOMETHING. I got an emergency ultrasound. My doctor called me the following day, the placement looks good but they found a cyst on my ovary. My heart sank. What does that mean? Will I be okay? How long have I had it for? What do I do now?

Here is when my pain became constant, and my questions remained unanswered. I was told that there was nothing I could do about the pain. I’m sorry, what? I just had to “deal” with it. Keep in mind, this is coming from my female doctor. I thought she would have more empathy, more understanding? Surely she must know that I’m not being dramatic. The cyst on my ovary was 5 cm x 5 cm x 5 cm (!!). But I was told that it was not big enough for them to take it seriously. It needed to be 7 cm. Surely there needs to be more support and answers for me instead of just “dealing” with it? At this point, the word “Endometriosis” was not even mentioned to me. It was just ‘cysts are common’ ‘a lot of women have cysts and don’t even know about it’ ‘we can’t know how long you’ve had this for’ ‘it may go away on it’s own, or it may not’ The only thing that had recently changed for me was the new IUD.

It was a constant battle. To get Dr’s to listen to me, emergency room visits, more tests, more ultrasounds, unexplained debilitating pain. I finally got a referral to a gynecologist – but it was a year and a half away. Well.. it’s something at least? I was asked if I would see a male gynecologist, the wait time would be shorter. While I didn’t feel completely comfortable, I was desperate so I said yes. During this waiting period, I decided to take my health into my own hands, and manage what I could. The Google research began. I was certain I had Endometriosis – What were women saying online? Less dairy, heating pads, moving my body (when I could), less drinking, acupuncture, pelvic floor physio, consistent sleep etc.

Endometriosis is often referred to as a dynamic disability. Some days I feel good enough to go to spin class, other days I can’t get out of bed. The physical aspects of this disease are obviously hard (it’s in the top 20 most painful health conditions), but it takes a serious toll on your mental health too. Mentally I’ve had to manage not being my normal myself, feeling isolated and depressed that my body was struggling so hard. Not being able to do the things I love and spend time with people I care about, and overall being lost, sad, and scared. Anyone that knows me personally, knows that becoming a mom is my ultimate dream. But knowing that this disease can affect fertility – added a whole other layer to spiral about.

By the time that I got the call for surgery, I had seen 2 gynecologists, and I was on 5 different medications to manage my pain (RIP to my poor liver & stomach), in addition to the more holistic approaches that I was trying as well. The cyst on my ovary was an Endometrioma, which means that it never would’ve gone away on it’s own (like how some other cysts might).

I also wanted to share that I asked my Dr to be put on the cancellation list (which was separate to the regular wait list). I was told that not everyone is put on the cancellation list, only those that ask. Because of this, it expedited my surgery date (which would have been scheduled late this summer)

My top recommendations pre-surgery
1) Meal Prep – Freezer Meals, favourite snacks, easy grab & go items
2) Refill Medications / Call to have someone be able to pick up prescriptions on your behalf
3) Bed Tray, Bedside Table (Check FB Marketplace/Thrift one!)
4) Walking Cane – Absolute game changer, and likely could’ve used even ahead of surgery date on high pain days
5) Pads – These organic ones are from Costco but can also get them at Community Natural Foods. You WILL need pads for recovery so definitely get some if you don’t already have some at home.

My top recommendations post-surgery
1) REST REST REST + SLEEP (without guilt!)
2) LISTEN TO YOUR BODY – if something doesn’t feel right, say something
3) Communication. With your caregiver (if you have one), with your doctor, your employer etc
4) Nighties/Big tee’s to sleep in – Loose clothing so that fabric doesn’t rub on your incisions aka no shorts or PJ pants
5) Cold Pack (Magic Bag) or similar – Remember to have it wrapped in a cloth or towel
6) Stool softener – Trust me, you’ll need it

Extra’s
1) Wheelchair – While not necessary, I needed it for the trip home alone and can now use it for recovery as well to get fresh air.
2) Gauze/Medical Tape – As your incisions heal, you’ll need fresh dressings. Bandaids might be enough!
3) Gravol – I was not anticipating to be as nauseous as I was, so this really helped me after the first few days
4) Water Bottle With a Straw – I’m not a straw person typically but this has really helped
5) Heating Pad – I have both a blanket and a portable (My Obi) one to wear
6) Slides/Slippers- For ease of going to and from the hospital
7) Somedays – Literally everything on their website
8) I got a Kala Light after reading all of the benefits of red light therapy
9) Journaling/Meditation/Therapy
10) Follow advocates online. @endometriosisem (IG) has been an invaluable source of info

Really grateful for all of my people. I’ve received an overwhelming amount of love, kind words, encouragement, treats, meals, activities, and gifts. I was literally blown away by everyone’s generosity during this vulnerable and trying time, and I really couldn’t have done this without ya’ll.

If you suspect that you have endometriosis (or even any other health issue), or know someone that you think might, please continue to advocate for yourself and your loved ones. As much as this road has been very difficult, I know that I’m still very lucky as I haven’t had to wait as long as many other women have to get diagnosed. If you aren’t being heard by your doctor, ask to be referred to someone else. Your pain matters.

The past few years have been really difficult, particularly this past year, and especially the past 3 weeks. What I’ve realized is that I’m more resilient than I think I am (even when I feel like I am not), and that women deserve the access and medical care that they deserve. You know your body best, and no one advocate better for you than yourself.
Keep fighting, keep pushing. It’s hard now, but I know it will get easier. While I’m no expert, I’m open to chat if you read this and it resonated with you or someone you may know.
I’m really looking forward to starting this next chapter, hopefully (significantly) pain free, and an improved quality of life.
With Love,
Murs ❤