endometriosis journey

Not knowing IS the battle

It all starts with not knowing. I mean think about when you first got your period. Aside from maybe the moms who they themselves had/have endometriosis, did anyone sit you down and tell you what to expect if you have painful periods? Did anyone give you a hotline to call if your cycle is out of whack or your pain is debilitating? My guess is no.

And then somewhere down the road someone stuttered the words ‘pelvic pain’ or ‘endometriosis’ or perhaps even ‘adenomyosis’ and from then on your world turned into a never ending rabbit hole of internet searches to figure out if google could diagnose you with something. A doctor – 10 or more years later – decided to happenstance the diagnosis primary based on symptoms (something google did for you many years ago) and then you are left wondering how bad it is, where it is, if you’ll be able to have children. Oh but dont jump ahead too quickly. It’s time for birth control first. Cus, that’s what we all do, isn’t it? Take these pills once a day and dont ask questions. It’s just what you do. Did anyone explain to you the side effects of birth control or the roller coaster of finding the right one? I remember when I went on anti-anxiety medications I had the briefing: “it will take 6 weeks or so before you notice anything significant. The side effects may be scary so dont worry, if this one isn’t the right fit we can find something else”. So why didn’t I get that same briefing when I went on birth control? Nobody told me that in the 90s I would gain weight, lose my self esteem, go into a spiral of self loathing and anorexia. I would think those are pretty worthy things to warn a 14 year old about. But on I went. Through the quicksand of emotions.

Herein lies the epitome of gender bias in healthcare. Love that term. Gender bias in healthcare. Do you think if a man had irregular erections and it might mean he couldn’t produce sperm to provide his partner during conception that that shit wouldn’t be TALKED ABOUT??!?! I had irregular periods since I was 14, had cyclic pelvic pain that only narcotics would touch AND I wasnt able to conceive. The answer? You must go through 2 years of failed pregnancy before we can refer you to a fertility clinic who has no real expertise in endometriosis but may officially diagnose you with this upon surgery to then boldly let you know you’ll have trouble conceiving. FUCK ME! If I had known this at the age of 14, maybe I would have chosen a different life partner. One who wanted kids. One who had the same family morals as I did. One who would hold my hand through it all. But I didn’t. I chose a man who was meh about the idea and I was 19 when I met him so what did I care. If I had known that endometriosis might bring about difficulty in conceiving maybe I would have tried earlier. Had less stress about the whole process. Went about it with a more positive approach. But I didn’t cus I didn’t know cus nobody thought to tell me.

I had an ablation at the age of 29, got divorced, decided I WOULD NOT put my body through child rearing – a decision I did not take lightly and was only amplified once I met the man of my dreams who too did not want children at the age of 50. And so here I was swimming in the land of ‘neither here nor there’ until an excision needed to be done. I have never really expressed my utter annoyance with this first excision but did nobody think to tell me that ‘yes’ I have endometriosis on my diaphragm but ‘no’ we are not planning on taking it out? I mean, I didn’t know at that time that taking out any lesions within the thoracic cavity would be such an ordeal but you’d think the surgeon would have … I dunno… told me? So I went through the surgery. She was very proud of her work. Oh good. At least there was that. And then… next steps. Lupron or nothing. I mean.. pardon me? So that was that. I literally was stuck between a rock and a hard place. No referral to a thoracic, no referral to an excision specialist with thoracic experience. Nothing. So I did what any threatened bullheaded woman would do. I squeezed myself out from between the rock and the hard place, and found myself a doctor who would listen.

Ok so in the end, the surgery to remove the thoracic involvement was much less intensive than expected. We didn’t have any pathology from the previous surgery – other than images – to confirm what the first doctors saw was in fact diaphragm endo and pathology from this last surgery showed no endo in the thoracic cavity. That’s not to say I didn’t have endo. I had it on my ovaries, and I had extensive adhesions on the bowel. The surgery was a good idea and my surgeon was excellent at going through the steps we would take leading up to the surgery as well as next steps after the surgery (and I got better at asking those difficult questions). But I do hate that system of briefing the patient while they are high on morphine. I didn’t remember anything! I did get a very nice call from the surgeon a few days later and the conversation was lovely. BUT… what about recovery? How long will it take to lift something heavier than 15lbs? How long will it take for me to stop feeling lethargic? At what point should I tell myself to stop being ‘sick’ and start resuming normalcy? I know they say to listen to my body but what should I expect? What is normal? What are the signs? How do I know if something is going wrong? If something goes wrong who do I call? When can I start running again? When can I travel again (ok, pandemic aside)? When can I go dancing again?

These are the questions that circulate across facebook groups and Instagram posts. What’s normal? Has anyone else had difficulty peeing? How long after surgery can I go back to work? What’s the normal feeling after surgery? How long after the surgery will I know if it worked?

Why is there such a black hole of information when it comes to expectations of endometriosis? This should not be allowed. In fact, it should be illegal to have a patient endure hormonal therapy and blockers and injections and surgery and Lord knows what else is coming down the pipe, without giving clear concise expectations. Why wasnt I told upon starting Orilissa that some – not many but some – women experience suicidal thoughts? I mean, IS THAT NOT SOMETHING I SHOULD KNOW?????

Not knowing is what drives me the most crazy when it comes to this disease. It starts at the very beginning and you continue to drive down this winding path without a map. It’s infuriating. Anyone else with me on this?

Happy Saturday 🙂

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