Managing Endometriosis
- Hanne Larsen
- Jan 13
- 6 min read
Updated: Jan 14
My Endo Story
Before my endometriosis diagnosis, I had only heard whispers of the condition: I saw people share experiences of endometriosis on social media, and an acupuncturist once cautioned me about it during a consultation. I didn’t think much of it, though, aside from it being a rare and painful condition. I couldn’t possibly have it. I was fine, right? Yeah! I’m perfect, nothing could possibly be going on.
Then, in 2021, back-to-back yeast and BV infections returned. They hit me with a vengeance. Additionally, I began to unconsciously shape my life around my period: I avoided seeing my now-partner for at least a week, sometimes more, due to it incapacitating me. Then UTI-like symptoms started, but a test result proved negative. My gynecologist recommended a pelvic and abdominal ultrasound.
When I received the automated health portal results, which revealed signs of endometriosis, I was shocked. I immediately got a phone call from my gynecologist. I asked for an MRI to confirm. The MRI backed up the ultrasound results, and it was just a matter of surgery fully diagnosing it.
To my horror, I found out that not every doctor knew about endo and how to treat it effectively. I also learned that it is widely misunderstood as a “bad period disease.” Figuring out the best course forward with an incurable chronic disease felt fraught.
I had the excision surgery in January 2023 and was officially diagnosed with moderate (stage III) endometriosis. Even after the surgery, it took time to find modalities, tools, and resources that worked for me. Below, I’m sharing what endo really is and a variety of methods that help me manage it.
What is Endometriosis?
Endometriosis is a chronic inflammatory condition “where tissue similar to the uterine lining grows outside the uterus, causing inflammation.” It affects someone’s whole body and life.
People of all sexes and genders can have endometriosis. Endometriosis pain shows up differently for everyone. Some people can also have adenomyosis, which is when endometriosis grows in the uterine muscle.
Tools & Resources for Managing Endometriosis
Surgery
One of the first things I learned when considering surgery was that I needed to steer clear of surgeons who use ablation to remove endometriosis. Excising (cutting out) the endometriosis in laparoscopic surgery is the gold standard for treating it.
It is strongly recommended to AVOID ablation (burning the tissue) because it doesn’t remove all the endometriosis and can lead to further inflammation and pain down the line.
For me, it was worth it to get the surgery because it brought down the inflammation in my body.
Education
The only reason I knew that I needed to avoid ablation is because someone I knew with endo told me. You are your own best advocate, and being informed is one of your superpowers when it comes to managing the very insufficient education that most doctors receive around endo.
One of my doctors shared a helpful website called Pelvic Pain Education. It helped me understand what chronic pain is and the different aspects of pelvic pain.
Movement
I’ve found different types of movement to be useful. Walking, pelvic yoga, running, cardio boxing, and swimming provide both a physical and emotional release.
Community
I joined an Endometriosis Yoga Circle led by one of my teachers, Sasha Sigel. The monthly yoga circle connects me with even more of the endo community. Meeting folks who also have endometriosis or chronic pelvic conditions can be a boon of support. They understand your experiences, and some things you just don’t have to explain.
I also attended a couple of Tight Lipped’s in-person socials. Tight Lipped is a grassroots movement by and for people with chronic vulvovaginal and pelvic pain. Meeting people at their socials gave me a lot of hope that I’m not alone and that there are ways to help change the very insufficient systems and treatments for people with vulvovaginal and pelvic pain.
I’ve also asked trusted loved ones to accompany me to appointments and procedures that I know will be emotionally challenging. For me, having someone at my side during those hard moments makes doctor appointments far more manageable.
Pain Journal
When I realized that the pain wasn’t improving after my excision surgery, I started to keep a pain journal. I tracked how much the pain was out of a scale of 0-10, and how frequently it occurred. I characterized the pain and described how it was impeding my life.
I brought my pain journal with me to doctor’s appointments, in addition to all my written questions so I could stay focused. This helped shape my treatment plan.
Multi-modal treatments
After my surgery, I was still in pain. While I was so glad to have had the implants (the endometriosis tissue) removed, my period pain was the same, if not a little worse.
Because I’d been in pain for so long, I was diagnosed with Central Sensitization Syndrome, which is when “the central nervous system undergoes structural, functional, and chemical changes that make it more sensitive to pain and other sensory stimuli”.
One of my doctors recommended multiple treatments concurrently to bring down pain so my body could handle it and receive the therapies. For me, this is a combination of hormonal, physical, and emotional therapies. It took me more than a year to strike a balance of recurring appointments that didn’t overwhelm me.
Pelvic Floor Physical Therapy
One of the first recommendations I got was for pelvic floor physical therapy. PFPT helps retrain muscles around and in the pelvis. I highly encourage you to ask around in your community for a trusted pelvic floor PT. You can even ask me!
Hormonal Therapy
I use hormonal birth control to manage my endometriosis. For a long time, I resisted this treatment. I felt angry that it was simply a “bandaid” and wanted to fix the endo “naturally.” But once I tried it, I saw how I got my life back. For me it is worth it, but everyone is different, and you may find that it's not the right treatment for you.
I also use a DHEA suppository (which turns into estrogen) and a compound Testosterone/Estrogen cream, which helps with pelvic pain and dyspareunia.
Emotional Therapy
I work with a therapist who specializes in IFS (Internal Family Systems) and EMDR (Eye Movement Desensitization and Reprocessing). I find that therapy beyond talking is more suitable for me, but you may find that to not be the case for you!
I also work with a Psychiatric NP, and she prescribed me a specific medication that helps with anxiety as well as musculoskeletal and nerve pain.
This next emotional therapy doesn’t quite fit under a specific therapy technique, but I rented a rage room before I got my surgery! I had a lot of built up rage about not being diagnosed for so long and about how dysfunctional our medical systems are. It felt great! Just make sure to bring an extra pair of clothes because you’ll probably sweat, and plan to get a bite to eat after to settle yourself.
Acupuncture
I go to acupuncture seasonally (I used to go monthly). I found an acupuncturist who specializes in pelvic health and pain management.
Acupuncture can be pricey. If most clinics are not in your budget, I’d encourage you to look into community acupuncture clinics that offer a sliding scale.
Nutrition
It is commonly recommended to eat an anti-inflammatory diet for people with endo. Food is very complicated, and I wouldn’t dare recommend something in a cookie-cutter manner. As I said before, everyone is different, and our needs are different. I recommend finding out what your needs are when it comes to food.
I found it useful to do an elimination diet called Whole30, which helped me identify what foods agree and don’t agree with me. I don’t restrict myself, and now I consider when it is worth it to have certain foods with the full confidence of choosing it.
Pain Management
I’ve found a variety of tools that help me manage my pain. Aside from good old Tylenol and Advil, I find that a heating pad can bring a lot of relief. It depends on the person - you might find that a cold compress feels better! CBD or THC balms can also help.
Due to other pelvic and low back conditions, I also got nerve blocks (one epidural and two pudendal) to help with my back and pelvic pain.
Some patients may also be prescribed botox for the pelvic floor, which can help relax muscles. Muscle relaxants or a valium/CBD suppository may also be recommended.
Patience
Take time to incorporate changes, routines, and treatments. It’s hard work. It also takes time (as well as trial and error) to find the care team that fits you.
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If you’ve been dealt a hand of cards that includes endo, you know just how terrible it is. It fucking sucks! You are not alone.
Below is a list of links and resources, most of which I already linked throughout this post.
I truly hope some of what I shared can support you. I’d love to hear from you in the comments or my contact form.
You’ve got this <3
Love,
Hanne
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Links
https://drseckin.com/endometriosis/#h-what-is-adenomyosis-and-how-is-it-different-from-endometriosis
Other Resources
The Doctor Will See You Now by Dr Tamer Seckin
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