When my doctor first mentioned that I might have endometriosis, I of course spent some time on Google trying to figure out exactly what that meant. The first articles I came across all talked about painful periods and some mentioned things like pain with bowel movements, pain with intercourse, and infertility. Most of that sounded familiar. But as I started digging deeper I learned about a whole world of other symptoms associated with endo that don’t even seem like they would be related! You can read more about my personal experience with endo here.
The truth is that endometriosis is so much more than a menstrual disorder. It is a whole body disease and so any approach towards managing endo needs to be looking at the big picture, not just the uterus and the ovaries.
What exactly is endometriosis again?
During a regular menstrual cycle the lining of the uterus (known as the endometrium) thickens in preparation for implantation of a fertilized embryo. If that doesn’t happen then it sheds during your period. With endometriosis, the body grows what are known as endometrial lesions which is tissue similar to the endometrium, but grows outside of the uterus. Typically these lesions are found on the outside of the uterus, ovaries, fallopian tubes, and ligaments surrounding the uterus, but they can also be found on the vulva, vagina, cervix, bladder, intestines, and have even been found as far away as the diaphragm, liver, lungs, or brain.
These lesions often will also thicken during the menstrual cycle and bleed during your period, however since the tissue can’t leave the body it leads to symptoms like pain and digestive problems. There are different types of lesions and they can vary in size and severity. Symptoms can range from mild to severe, which doesn’t always correlate with the severity of the lesions themselves.
How do I know if I have endometriosis?
If you experience some of the common symptoms mentioned above like painful periods, pain with bowel movements, pain with intercourse, and/or infertility, it is important to find an experienced specialist. One great resource for this is Nancy’s Nook, which has a network of well-researched doctors as well as educational resources.
The only way to definitively diagnose endometriosis is via laparoscopic surgery (during which time a skilled surgeon can also excise the endometriosis lesions), but your doctor may be able to get an idea of what is going on via ultrasound or MRI as a starting point.
Skilled laparoscopic excision surgery (different from ablation) can be a game changer for many women with endometriosis and is considered the gold standard for treatment. This may not be the answer for everyone, but this is where communication with a trusted doctor can be important.
But it is important to know also that excision surgery is NOT the be all, end all solution. Endometriosis cannot be “cured” and recurrence after surgery is relatively common. This is where having a team behind you is crucial! In addition to a good doctor, it is also important to look into a nutritionist (hello friend!), possibly a pelvic floor therapist, and even a therapist for mental health and stress support if that is needed. Again, endo is a FULL BODY disease, so looking at healing your body and mind as a whole will always be the best course of action.
You mentioned other endometriosis symptoms besides the commonly known ones…like what?
This is the topic I most want women to be aware of. A quick Google search can come up with most of the information I have presented above. But there are less commonly known symptoms associated with endo that as an endo warrior myself I believe are very important to become aware of so that you know where these are coming from and can truly address the root of the issue rather than all of the individual symptoms.
Endometriosis adhered to the bladder can lead to bladder related symptoms. This can include frequent UTIs, urinary urgency, needing to go to the bathroom more often during your period, and pain during urination.
Have you ever heard of the term “endo belly?” This is because digestive issues are such a common occurrence with endometriosis that it has its own name! Endo belly refers to the awful bloating that occurs, usually during the menstrual cycle, but can actually occur at any time. There is also a strong correlation with IBS, diarrhea, constipation, and nausea or even vomiting during your period. This can occur when there are endometriosis lesions affecting the bowels, but can occur even with lesions elsewhere in the pelvis. Acid reflux is another digestive issue that can come up.
Chronic low back pain is another common symptom associated with endo. Again, just the presence of endometriosis lesions in the pelvis can cause pressure on the lower back, but lesions can also press on nerves. This back pain can also radiate down the legs, which is often misdiagnosed as sciatica.
Shoulder pain may seem unrelated since the shoulders are quite far from the pelvis, but endometriosis lesions on the diaphragm can cause what is known as “referred pain” in the shoulders or chest. Some women may even experience difficulty breathing if lesions on the diaphragm are especially bad. This shoulder pain is also common after excision surgery.
Chronic pelvic pain
Pelvic pain is not limited just to your period with endometriosis! Many women experience pelvic pain around ovulation or all throughout the month.
Fatigue is actually one of the more common symptoms reported by women with endometriosis. In fact, a 2022 study of 22 women with endometriosis, 100% reported fatigue affecting their lives to some degree. The exact reason behind this is unclear, but it could be related to the chronic pain and impacts on stress.
Anxiety and Depression
Several studies have shown that women with endometriosis also have an increased rate of depression and/or anxiety compared to the general population. Again, this may be related to chronic pain and, in my humble opinion, could also be related to medical gaslighting. More on that to come!
Wow that’s a lot!
Yes it is! Endometriosis truly is a full body disease. That is where it is so important to build a team to help bring your body into the best state of health possible. As a Nutritional Therapy Practitioner, I work with my clients closely to ensure that they feel heard and that every symptom they are experiencing is being addressed at its root. Endo warriors deserve to live full lives and be in a state of optimal health and I am so happy to be able to be a part of that journey, big or small.
In an upcoming post I will be sharing more about how to manage endometriosis naturally, so be sure to subscribe so you don’t miss out on the newest post!
Much love and happy healing!
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DiBenedetti, Dana; Soliman, Ahmed M.; Gupta, Catherine; Surrey, Eric S. (2020). Patients’ perspectives of endometriosis-related fatigue. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7203274/
Mayo Clinic. (2018). Endometriosis. Retrieved from: https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656
Seladi-Schulman, Jill, PhD. (2022). How are Endometriosis Lesions Staged and Treated? Retrieved from: https://www.healthline.com/health/endometriosis/endometriosis-lesions
Antonio Simone Laganà, Valentina Lucia La Rosa, Agnese Maria Chiara Rapisarda, Gaetano Valenti, Fabrizio Sapia, Benito Chiofalo, Diego Rossetti, Helena Ban Frangež, Eda Vrtačnik Bokal, and Salvatore Giovanni Vitale. (2017). Anxiety and depression in patients with endometriosis: impact and management challenges. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5440042/