Living with endometriosis
- Apr 18, 2023
- 5 min read
Updated: Oct 16, 2023
What is endometriosis? Is there a cure? What does this mean if I am diagnosed with it? Where do I start?
So many questions come with being diagnosed with endometriosis. More questions than answers. Unfortunately, little is known about this condition and after being diagnosed with it 7 months ago, I am still learning more about it every day. It has been an emotional journey and has taught me to value life more. I live everyday, grateful to be alive and while I do go through bouts of depression and anxiety, I constantly remind myself to allow myself grace.
There are so many reasons to be sad, angry but more reasons to keep fighting.
As a disclaimer, I am not a medical professional, also what has helped me, may not help everyone. Make sure to consult with your doctor if you suspect you have endometriosis.
What is endometriosis? Let's start with the definition, then how I was diagnosed, how I manage it and what is next for me.
What is endometriosis?
According to the Mayo Clinic (2023), "Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus."
Common symptoms include painful periods, pain with intercourse, pain with bowel movements or urination, excessive bleeding, infertility, nausea, constipation, bloating, fatigue, the list goes on.
What causes endometriosis?
The cause is unknown and there is no cure, in summary.
The only way to confirm endometriosis is through laparoscopic surgery. During this procedure, "your surgeon makes a tiny incision near your navel and inserts a slender viewing instrument (laparoscope), looking for signs of endometrial tissue outside the uterus." (Mayo Clinic, 2023)
Read more here for all of the medical information from Mayo Clinic.
Symptoms:
Diagnosis:
How I was diagnosed
I have never had many of the symptoms that come with endometriosis. Throughout my adolescent years, early twenties I thought my periods being painful and my symptoms were just PMS. However, none if it ever seemed alarming to me or my OB-GYNs in the past. In 2020, I had a miscarriage which was shrugged off by medical professionals as common and assured me I was healthy and would be able to conceive later. This is the event that I feel exasperated my symptoms when I started having unexplainable abdominal pains randomly. A cause was never determined by my primary care physician.
Flash forward, I understand now.
In 2022, I suffered another miscarriage and ultimately ended up being an ectopic pregnancy. An ectopic pregnancy is not viable and occurs when the fertilized egg implants outside of the uterus, commonly in a fallopian tube. To remove an ectopic pregnancy, medical intervention is necessary or it may be fatal.
With the ectopic pregnancy, my fallopian tube ruptured and I was bleeding internally.
This was the most terrifying time of my life.
I had to have emergency surgery, in which, they removed a 7 cm mass (not fully developed fertilized egg) and the ruptured fallopian tube in September 2022. The OB-GYN that performed the surgery later informed me during my post-op appointment that I have endometriosis and this was causing the miscarriages.
To recap what I have found out since then, my other fallopian tube also looks damaged from scar tissue due to endometriosis. This is based on what the OB-GYN who performed my surgery saw and from additional medical testing an endometriosis specialist has done on me. I did get a chance to see pictures from the surgery and unfortunately since there was so much bleeding from the ruptured tube, it was hard to see or treat my other tube. The doctor was focused on the right tube where the rupture was. If I want a chance to conceive naturally, saving the other tube would be ideal, more on this later.
What has helped my symptoms (lifestyle, diet)
Since this all only happened 7 months ago, I am still learning more about what helps my symptoms. Unfortunately, there is no cure.. I have researched this tirelessly and the message is the same. However, there are ways to help improve the symptoms I mentioned above.
I am now seeing an endometriosis specialist who recommended a Mediterranean diet, eating healthier, exercise, lowering stress levels. I will go more in depth on this on how this is all going on another blog post. I have followed some of her recommendations but have personally struggled to stay consistent. However, from the lifestyle changes I have made, the inflammation has decreased since being diagnosed. What I mean by inflammation is, pain during my periods/intercourse and significant bloating. I have also lost about 20 pounds since then which is a huge plus.
What I am doing about it (medically)
The endometriosis specialist who I am now seeing will be performing excision surgery in June of 2023 (in a couple of months) to try to save my other fallopian tube. If it is damaged beyond repair, they will need to remove it, as keeping it may cause more complications later down the road. From all of the research I have done, this is the best option at this point.
What is excision surgery?
VeryWell Health (2022) describes it as a surgery performed in which "endometriosis lesions are cut out, removed, and the tissue is sent to a pathologist to confirm it is endometriosis."
I will be going through surgery again and I question this decision everyday. However, the sliver of hope keeps me pushing forward. Also, the chance of reducing my pain gives me hope. The best way to describe the pain I feel is that my body feels bloated/ achy when I do not eat well or take care of my body. PMS symptoms are emphasized when I am not mindful of helping treat my medical condition through diet, exercise, supplementation, stress reduction, breath-work, etc.
Conceiving naturally is not my main driver of having surgery. Although, saving my other tube is the ideal outcome, I am preparing myself for all possible scenarios and am optimistic regardless of what happens.
A takeaway is to pay attention to your body. You know yourself better than anybody else. If you feel something is not right, take the time to understand why. Don't wait until an emergency happens and be proactive of your health. I will be using this blog to provide updates on surgery and also more in depth how I am treating my symptoms. The overall message is to have hope, focus on what you can control and let the rest take care of itself.
Take care of yourself and let me know what questions you have on endometriosis or health in general. If you want to follow my journey at a more personal level, stick around for more content to come.
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