My journey with Endometriosis

Endometriosis.

Maybe you’ve heard of it, maybe you haven’t. Maybe you even have it, and if so, I’m sorry. Me too. I’m not here to write about the scientific facts about endometriosis, otherwise referred to as endo, since you can find all of that information on your own in a google search. I want to speak about my story with endo, because every story looks different.

I got diagnosed with endometriosis in August of 2020. The day of my excision surgery, was the day of my diagnosis. That is, because you can’t officially confirm if a patient’s symptoms are endo or not until you go in surgically to confirm. I opted for the full excision surgery performed by a specialist instead of having them open me up just to confirm and have to schedule a separate surgery for removal.

Before I dive into the dirty details of my discovering what the hell was wrong with me, now is your chance to stop reading if you cannot handle hearing about blood, bowel movements, or anything graphic for that matter. This is personal stuff, and I’m ready to share, because I do believe it is through speaking on the subject that other women learn about the odd symptoms they face, and can start seeking the healthcare they need.

Now, onto how I realized something was definitely wrong with me. One night in 2020 I was using a vibrator, an internal one, because I didn’t know anything about external vibrators at the time. I grew up very religious and didn’t know anything about my own body for far too long. Had I known about external vibrators maybe I wouldn’t have discovered I had endometriosis so soon, so thanks for that I guess? I’m sure I don’t have to educate you all on the logistics of what happens when you use a vibrator, but let’s just say, it uuhhhh worked? It was great, but then it wasn’t. I was immediately filled with pain that radiated down my legs all the way to my ankles. I crawled out of the tub and took up the fetal position on the floor. I felt like I was going to pass out or throw up, maybe both. I was alone, and scared. I sent a text to some friends to tell them if I don’t reply by a certain time to send for help. The feeling did not pass and I spent the night in pain fighting the urge to vomit. The next morning I called my then gynecologist office (Coastal Women’s) because I knew something was very wrong. They got me in right away. I told them I thought it could be pelvic inflammatory disease, it wasn’t. I don’t remember exactly how many appointments I had before I realized endometriosis may have been the reason for my pain. It may have been the same day, or over 2 visits, but at some point I told the doctor I was seeing that I think what I was experiencing is a symptom of endometriosis. This was not my regular physician, and I’d like to think that’s the reason she brushed me off so flippantly, but from other women I’ve heard from that have had to see her as their doctor, they have shared similar stories about her pushing more exercise as a means to healing your issues. Any issue for that matter. Mind you, I told her I was working out 3 times a week…

She had access to my chart, that had about 7 years of proof of me complaining about heavy and painful periods. I had been on 2 separate forms of the pill starting at age 17-19, and then I got my IUD. By the time I saw this doctor, I had been off all forms of birth control for 8 months. Within those 8 months, my periods came back, and with a vengeance. I didn’t get a period the entire time I was on the progesterone only pill, and the iud. I thought that was normal, because they told me it was. I personally feel that that contributed to my intensifying periods once they did come back. At one point, I was bleeding through a super tampon every 45 minutes. Let’s get this straight, I’m 120 lb woman, that’s a lot of blood to be losing for my size. I decided to switch to the cup insertion because I needed it to last longer than 45 minutes. If you don’t know what a cup is, look it up. And yes, it’s a freaking mess when you take it out, so hopefully you have the luxury of a private bathroom. On my heaviest days, I would get 3 hours of protection before the cup overflowed and I would bleed through my clothing. Still incredibly inconvenient when the package boasts up to 8 hours of coverage. This intensity would last for 2-4 days, and my period would last on average 7 days. I was also getting it every 21 days. It felt like I was always getting my period, or on it, and I was exhausted. So exhausted I could fall asleep anywhere. One time I even fell asleep at a nail appointment. I even had a friend ask me if I’m narcoleptic. Nope, my lady bits are just draining my life force from me, sorry. I wish I could recall my exact conversation with the doctor tasked to working with me that day when trying to diagnose my issues, but I can’t, so I’ll give you what I do know happened. I do know that I told her of my extreme bloating. I looked 6 months pregnant almost all of the time at this point. And to all of the people that have dismissed me when I say that because I am “skinny” THIS WAS NOT NORMAL FOR ME, why would any “skinny” person have a distended abdomen like mine? It was also incredibly painful, so your comments are unhelpful, and quite frankly, insensitive. I did tell the doctor that no pain meds touched my pain. She proceeded to suggest I take Tylenol 36 hours before my period begins anyway, because as she said, “it just sounds like heavy periods.” Now she did say, it’s possible you have endometriosis after I brought this concern up to her, but she said she doesn’t think so. I felt shut down. How could I be experiencing pain to the point of dry heaving and almost passing out and that just be deemed as a heavy period. I forgot to mention, at this stage of my life, I was dry heaving over the toilet almost every morning. Which led to me skipping breakfast, because I was far too nauseous to eat. Another symptom of endo. Go figure. When I was at this appointment, I only knew so much about endometriosis because I wasn’t certain I had it. I left out a lot about my symptoms that I didn’t even know were symptoms. Maybe if I had brought up the shooting pain in my asshole when I have a bowel movement she wouldn’t have told me just to workout more and take Tylenol. I highly doubt it though.

When I left the office, she had told me we could schedule a laprascopy if I really wanted one. I agreed to try her suggestions before scheduling a surgery. I was 22, alone, and didn’t know how to advocate for myself very well yet. When I left I felt that I had gotten no where, and decided I needed to research as much as possible about endometriosis. What I found out, was that every woman sharing her story had been dismissed the first time they brought it up to a healthcare professional. These women spent years of their life being dismissed and searching for answers. Upon reading their stories, it was clear to me that I do have endometriosis, and fuck what that doctor told me, what does she know? Doctor’s are just human after all, capable of making mistakes and overlooking things. I called back the same week to schedule my laprascopy with the doctor in question. This would only determine if I did have endometriosis, not remove it. I didn’t love the fact that my surgery would be under the knife of a woman who didn’t believe me. So I looked for other professionals. The women on the internet said I should see a specialist, so I found one. My surgeon has since sold his practice, but he once owned New England center for endometriosis. He was the only specialist I could find in Maine, so I set up a consult.

When I met him for my consult, it was 1 hour long, and $300, out of pocket. Did I mention he doesn’t take insurance? During my consultation, there wasn’t a moment I felt that he doubted what I was telling him. Knowing more about endometriosis symptoms at this point, I was able to tell him all of mine. That consisted of: fatigue, painful/intense cramps, painful bowel movements, painful intercourse, constipation, diarrhea, nausea, dry heaving, heavy periods, long periods, and frequent periods. I also had been experiencing sciatica since I was 15. I didn’t know that could be a symptom until after I had surgery when it stopped causing me pain. I felt confident that this was my surgeon, and scheduled my procedure.

Most people I told, thought I was jumping to conclusions, especially since I was going to pay out of pocket. Their opinions on my decisions did not matter to me, but it was upsetting to not have encouragement from those closest to me. My husband, who was then just my boyfriend, believed me. He even went as far as to put my surgery on his credit card so I could get the surgery. It was only an advance, and I paid him back over the next few months. Without his help, I would not have been able to get the care I needed, like so many others cannot.

When I came out of surgery, my surgeon told me I was right, and I did in fact have endometriosis. He found it on my ligaments that hold up my uterus, my bladder, my pelvic sidewalls, and my rectum. My colon was also adhered to my sidewall with scar tissue, and there was a cyst on my left ovary, all of which were removed. I also opted to have him perform a pre sacral neurectomy, which removed a clump of nerves that send pain signals to my brain. Don’t come for me and my descriptions of medical terminology if you are in the medical field, I’m just repeating what I remember being told from a surgery that happened almost 5 years ago.

It was a relief to know I had been right about my health, and feel like I finally had answers. I was hopeful that surgery would eliminate my pain for good, but if you’ve had the surgery, you probably already know that is highly unlikely. As for me, my pain relief lasted for a little over a year until I noticed my symptoms creeping back in. My length of my periods post surgery was down to only 3 days, I am now back up to 5, sometimes 6. I was able to go to the bathroom without pain, but now, I feel like I could pass out during certain times in my cycle. It feels like my life is slipping away from me yet again. The energy I gained after surgery, is nowhere to be found.

So what does one do when faced with debilitating invisible pain that cannot truly be cured? You find a gynecologist that will listen, and formulate a game plan best suited for you and your needs. So I did. My next course of action, is a hysterectomy. Now this is not for everyone, and is extreme. I have known for a long time that I do not desire to be pregnant, and especially not to give birth, so it makes sense for me as I have been under the knife enough, and do not enjoy it. I know there are many other ways to minimize and possibly eliminate my pain, and I do incorporate many of the holistic options that exist. I have learned through my endometriosis journey, that the most important thing, is to listen to my body. My mind, body, and soul have aligned with the choice to remove my uterus. It is one I look forward to, to hopefully end this war with my body.