*Trigger Warning: This article contains images and content about infertility and depression
As I was writing My Journey with Endometriosis, although my goal was to share helpful information, I really felt like I was holding back on some of the tougher parts of living with the illness. Here’s what I really wanted to say about living with Endometriosis, the truth.
The truth is, as much as I try to share positive thinking and perspective, I’m a sucker for pain. Misery loves company is what they say. For me, it’s like the ultimate validation. Someone out there is feeling the same thing I feel. I’m not alone, therefore, my pain is validated. Which, let me be the first to admit, should not be needed. But that’s been my process, of “feeling my pain” and “sitting with it”.
Endometriosis and Doctor(s)
Out of my 7 gynecologists, 3 really listened to me. I mean reeeaaallyy listened to where I felt like they actually cared.
A good endometriosis doctor cares. Here’s how you can tell:
- They have a great bedside manner, especially since you’re seeking treatment for a condition and not pregnancy alone.
- They treat you like a patient and not like a statistic.
- They make eye contact with you and take the time to listen to your specific needs without rushing you.
- They offer treatment options as suggestions and give you the statistics, pros, and cons/side effects.
- They’ll set up a follow up appointment, usually in a month, to see how your treatment is working for you before they establish a set treatment for you.
- They offer holistic treatment options as well as pharmaceutical ones.
- Their need to help outweighs their god complex … and big pharma.
You might want to look for another doctor if you experience the following:
- They don’t do any of the things above.
- A level of discomfort outside of the emotions you normally feel with a chronic illness. Listen to your gut.
- Noticing they value the power of suggestion. They push you towards a treatment you are not comfortable with.
Inappropriate pressure. 📢THE DECISION BETWEEN TRYING TO CONCEIVE VS TREATMENT SHOULD NOT BE EXPECTED TO BE MADE AT YOUR FIRST APPOINTMENT WITH A NEW OBGYN. That’s for all the doctors sitting in the back. This is a big one for me, that doctors are sensitive to your age and situation. I’ve had new doctors pressure me to decide whether I wanted to try for a baby or treatment at the same appointment, without sitting down with me and discussing my history. With a, “well you’ve gotta make a decision right away” attitude, “because the clock’s ticking”.
I completely understand there is a physical timeline for women to conceive, however, for some women, the yearning for a baby and need for pain management are equal. That is a HUGE decision to make for some women.
Am I projecting or is that shitty bedside manner on the doctor? Honestly, I’m already pissed at the fact that I have to take projection into consideration, questioning now my mental capacity because a doctor doesn’t take the time to be mindful of how utterly hard this decision can be for some women. Read my medical records, that I took the time to pay for and make sure you got and change your approach.
Bottom Line
Bottom line, a great doctor will initiate going over your history with you, asking for records and actually reading them. A good doctor may ask for your history, for reference, especially if your records are like 500+ pages long. I start questioning the doctor when they don’t inquire about my history, dismiss any of my symptoms, give me the “you’re older” in singsong, or if I know more about endometriosis treatments than they do. All 4. And you should too. Too many times have I left crying, feeling scared, and without options. On to the next one. Especially when you have a health care provider who doesn’t have an internal infrastructure in place to offer doctors who specialize in endometriosis. Run, don’t walk, to the next OBGYN.
Symptoms
FML when Tia Roja (Aunt Flow) is traveling to see you. Even before the first drop falls. The absolute worse is dropping the kids off at the pool. Not to mention sneezing while you’re pooping, will test your will to live. You’re already in pass out from pain territory, sneezing contracts everything. You won’t even care how loud what came out was or how much it was because it is already so painful coming down the canal, add a sneeze, might as well bring a hammer and nails for the coffin.
Thankfully these pains come in waves and not every time you sneeze or use the restroom. It’s like a box of chocolates. You never know what you’re going to get.
What still kills me to this day, all positivity and jokes aside, 15 years post diagnosis, I still deny my pain when I’m in the thick of it. I tell myself, “It’s not that bad … I’m okay … I can make it to work … I have to be strong and push through”. Isn’t that what the rest of the world, including a lot of doctors tell us?
Pain Management
So you go about life, pushing through … pushing though … pushing through … all the pain management treatments offered. Maybe this one will work. Meanwhile, you have your go to remedies that become your comfort. You stock up on them, sound like a pill popper carrying those babies around juuuuust in case for a little relief until you can make it home to the safety of your comfiest place. For me, the pain hasn’t gone away. It’s gotten worse. And changing insurances has not been a good experience for me. But you know what ladies, you keep going. You cry when you need to, love yourself a little extra with your favorite anti-inflammatory foods, comfy clothes, candles, and blankets, and you do what you can, when you can.
Infertility
To all of those who have been diagnosed with endometriosis and still blessed with little faces of joy, that was your beautiful path and it was meant for you. Here’s a snippet of some of my experiences.
The waiting room to see your OBGYN usually is a triggering moment. The majority of the patients waiting with you are pregnant. There’s no way to hide it, nor should they. It’s just one of those quiet moments you have with yourself wondering, “will that ever be me?”. And it sits with you in an unhealthy way, thoughts ruminating. You know what you’re going in for. Pain management and keeping your reproductive organs as healthy as possible meanwhile.
Then, you walk into the exam room and sit there and wait. Often times walking down a hallway of baby photos and/or into a room with the exam table facing a bulletin board full of “welcome baby so-and-so” photo cards and pictures with the doctor holding the babies.
This last period I had, I ran out of all blood catching contraptions and I had already started a surprise period of course, never on schedule, even with birth control pills. My situation didn’t afford for me to use any delivery service, nor did I want to inconvenience a friend. I took my happy cramping, fatigued, feminine wipe stuffed self to Target at peak time, 4pm. Went in amidst the crowds, bent over to reach the tampons all the way on the bottom back shelf and stood in the long line. In front of me, a woman a bit younger than me with 4 beautiful girls. Behind me, a pregnant glowing mommy to be. And me, smack dab in the middle with my tampons, barely coherent but enough to feel that sting.
Those are the super tough moments for me. The moments that have spiraled me back into a depressive state, already in an incapacitated state thanks to my hormonal imbalance.
What’s Helped me Through These Trigger Moments?
- Having someone join you at your appointment. Parent, partner, friend. Anyone.
- Messaging a few people. Let them know what’s going on so they can support you by text while you’re waiting.
- Music, audiobook, or book.
- Sitting in your emotions and feeling your body’s reactions to the triggers. Breath work.
- Post appointment incentives. You made it through a tough appointment. What kind of self-care practices can you provide comfort to yourself with? Prep your self-care plan ahead of time so you can think of the calming and enjoyable things you will do after your appointment.
Endometriosis Sucks
I think it’s safe to say across the board, endometriosis sucks. Symptoms vary, pain levels vary, and here’s the kicker, it doesn’t matter what stage you are at as far as the pain scale goes. Stage doesn’t = pain. It truly is your journey. Tears, strength, pain, support and all.
I always remember this clip in reference to the conditions I’ve been given to walk with on my life journey. It’s a very 80s show but also very relevant … and validating.
We’ve come a long way warriors. Don’t give up!
P.S. Did you catch those Chanel door knocker earrings on Doña Dorothy there?!
What are some of your own endometriosis warrior stories you’ve been holding back? Some truth moments buried deep inside? Share them with me below.