Cramps that outlast heating pads + pain killers. Nausea + diarrhea + constipation. Unexplained fatigue. Bloating + gas. Sound familiar? Keep reading – these are signs that you could have Endometriosis.
In December I was tentatively diagnosed with Endometriosis. I say tentatively because a 100% definitive diagnosis can only be obtained through laparoscopic surgery, even though many physicians will diagnose based on symptoms, medical history, etc. The fact that Endometriosis requires a semi-invasive procedure to definitively diagnose it is one of the reasons it is so. dang. hard to pin down.
In an effort to spread awareness, I shared my experience here and also over on instagram. You guys, I was absolutely overwhelmed by the response.
I knew the statistics on the commonality of Endometriosis, but I had really never heard anyone that I know talk about it much…until I started sharing. Friends + family started coming out of the woodwork with their own stories + experiences. I couldn’t believe it. How are there this many women with this disease + yet so little information or understanding about it?
Endometriosis: The Incurable Female Disease
If you didn’t have the chance to read the first part in this series, let me give you a quick break down of what Endometriosis is:
Endometriosis is a disorder where the tissue that normally lines the inside of the uterus grows on the outside. It usually involves the ovaries, bowel, or the tissue lining your pelvis, though sometimes it can spread beyond the pelvic region. During your menstrual cycle, this displaced tissue thickens, breaks down, and bleeds. Because this tissue has no way to exit the body, it becomes trapped. This can lead to inflammation, cyst formation, adhesions, and pain.
Sadly, there really isn’t any “cure”, so to speak. Treatment for Endometriosis is diverse + personal with the golden standard of care falling to “excision surgery” where the actual endometrial tissue + scar tissue is cut out of the body. Other options include pain management, hormone therapy + holistic lifestyle changes, amongst others.
I’m still very much in the “figuring it out” stage, so I haven’t really started any sort of treatment. I’m just dealing with symptoms + waiting for doctors appointments to chat about what comes next.
“Do I Have Endometriosis?”
When I spoke up about my diagnosis on instagram, in particular, I had a dozen girls reach out to me via direct message. They all said the same thing,
“This sounds like me. Could I have this?”
While I wish that I could answer that question for you, obviously only a skilled health care professional can offer you a real diagnosis. However, I do believe that it’s our job to be informed patients + to really advocate for ourselves.
Endometriosis is believed to affect 1 in 10 women- that’s a lot! It also has a 10 year delay in diagnosis with an average of 8 doctors seen. Sadly, part of the problem is that Endo symptoms overlap with all sorts of other concerns. Women are often misdiagnosed with IBS, with choric fatigue, with PMDD, etc.
If you have any of the below symptoms without a proper diagnosis, please consider talking about it with your doctor:
- Abnormal Periods (especially heavy periods or long periods): A typical period is 3-5 days long, but can go to 7. Endometriosis periods can last longer than 7 days + often require tampons or pads to be changed every 1-2 hours. Clotting is really common.
- Painful Periods: Generally Endo period pain lasts for more than a day or two and can even start before your period and continue when the period is over. It generally is strong enough that Advil, Ibuprofen, Paracetamol, etc. don’t make it better.
- Bowel + Urinary Issues: Women with Endometriosis often have bowel + urinary tract problems such as diarrhea, constipation, bloating, painful urination + bowel movements, blood in urine or frequent urges to urinate. They can also struggle with nausea, bloating, gassiness, and even vomiting.
- Painful Sex: If the disease has spread to deeper tissue of the pelvic cavity, it can cause extreme pain or discomfort during sex.
- Neuropathy: Because of the placement in the pelvic cavity, endometriosis can affect the nerves connected to the legs + can result in nerve pain and numbness in the lower extremities.
- Fatigue: Because of the chronic pain + inflammation, many women with endometriosis struggle with ongoing fatigue that can range from distracting to debilitating.
- Infertility: As endometriosis progresses, scar tissue and adhesions can accumulate, which can affect fertility. Studies have shown that endometriosis is linked to 1/3 of infertility cases, can prevent the release of eggs, and decrease the quality and number of eggs.
That Sounds Like Me, What Do I Do?
See a doctor. If there’s any part of you that believes you might have Endometriosis, it’s best to get the opinion of a health care professional as soon as possible. An OBGYN will be able to offer some guidance, but if you feel like they aren’t taking your concerns seriously, you may need to seek out a specialist. This disease is best treated by someone who sees it every single day.
Start tracking your symptoms. It was when I started tracking my symptoms that I noticed they seemed to coincide with either my ovulation or during my period. It was like a lightbulb went off! I use the Flo app + am able to track mood, symptoms, + all sorts of other helpful information for my doctor. You can also use a regular paper tracker to note your symptoms too!
Do your research! There are so many amazing resources to start digging into what Endometriosis is + how best to approach diagnosis. Know Your Endo + the Endometriosis Foundation of America are great places to start.
There is hope.
I’m not sure if you have Endometriosis. I’m not sure if you’re even sick or if you’re just following along with my journey. Whatever your reason for reading this, I hope you walk away informed…but I also hope you walk away encouraged.
Someone that I admire greatly gave me some really great advise right after I had met with my doctor. She said that I don’t have to be owned by my diagnosis. It doesn’t have to be a part of my identity. I can say, “I have a diagnosis of Endometriosis”, to acknowledge it + to treat it. But, I don’t have to make it the defining story line of my life.
If you’re struggling with chronic illness, please know that you aren’t alone. We are strong women. We will feel pain, but we will feel better too. If I’m ever feeling overwhelmed or depressed because my stomach is swollen or there’s another food I can’t stomach or I bled through another pair of my favourite leggings, I’ve found a few things to be really helpful:
- Step away from Google
- Stop researching
- Take a bath
- Talk to a friend…or your mom
- Have a good cry
- Eat a sweet treat (like these or these)
- Read a book
- Go for a walk
- Watch the sunset
- Listen to your favourite song
And please know, you can always reach out to me too. I’ve had a lot of people listen to me over the years, ha! My DM door is always open.
P.S. A year on, I’ve found some things that have made SUCH A DIFFERENCE to my symptoms + I want you to have them too. Click here to read about how I’m healing from my chronic illness.
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