Health

What Endometriosis is to me

Apparently this ruthless ‘autoimmune disease’ is so stealthy that no doctor has been able to crack its code. I’ve spent 7-10 years dealing with varying levels of severe to mild symptoms and have endured countless doctors visits with western and eastern medical practitioners and no one has given me methodology that curtails my endometriosis. I’ve had three surgeries, taken several prescriptions, been on countless supplements, tried some voodoo medicines and practices, spoken to wellness coaches, met with chiropractors, included therapy sessions, attempted a few dietary changes, and even went to a nationally recognized gynecologist. In many ways, I am still at the beginning of my endometriosis journey.  

If you are NOT interested in endometriosis and its symptoms then I would stop reading this post, now. The reason I am sharing this is because I have spent parts of my life thinking I was broken. I’ve endured daily panic attacks with the onset of every new symptom. Some OBGYNs belittled my symptoms. They essentially tossed some anti-anxiety medication my way and said, “Hey, you’re a mother and all of these things are normal. Take this pill and let’s see if it helps take the edge off.”

So, I am about to get graphic because I want to normalize this experience and all of its symptoms. As soon as I chose to openly share these symptoms with other women in conversation, I received a resounding “Me too, but I thought it was just me.”  And, that’s just not right. We shouldn’t have to bear this alone or feel stupid and gross for having these symptoms, and we shouldn’t be belittled because we’re women and women just have to go through hard things… So, here it goes. These are my most common symptoms. And, they usually present themselves in this order throughout my cycle. I’ll include some of my remedies as well as anything I’ve learned or tried along the way.

“Pelvic pain” – I describe this as twinges of pain low, low and deep, deep in my abdomen (usually the left side, which makes sense to me since my right ovary was removed in 2013) and a throbbing inside and around my vagina, especially after sex but also when I ovulate or as a sign of my period. SO, like always… And, I’m not talking about a passing sensation. I am saying an ever-present ache that impacts the way I walk (upright or hunched over a little, possibly waddling around a bit to overcompensate). If you’ve given birth, you may be familiar with the feeling of bearing down. It’s like that, at times. And other times it’s more knife-like, which I recently learned is called dysmenorrhea.

I often use a heating pad, and I also like to end my day with a cup of tea. I’ll mix Peppermint with Lavender or Rose thorn. As you may have read in a previous post of mine ( Doctor, Doctor)  I was given that advice by a chiropractor who also advises in nutrition. It seems to help take the edge off and it fits nicely into my routine. I’ve never tried Tylenol or any over the counter options. Not because I don’t agree with them, but because I’ve probably developed a tolerance to the sensation and I simply press-on.

Back pain – It feels like there is a ball or bulge pressing outward in the general area above my tail bone. At night I sit with a heating pad on it. This usually provides some comfort. This kind of ache is not one that gets any reprieve from a massage. In fact, it doesn’t hurt to the touch. It’s inside, somewhere. So when I beg my husband to rub my back, though I appreciate the comfort this act provides me, it doesn’t help at all with the pain. Interestingly, I’ve read that endometriosis can spread to other areas around your uterus, like your bladder, bowels, lower spine, even to other arthritic prone joints. 

Leg pain – More throbbing, radiating pain and this time on top of my thighs. It’s a soreness that also isn’t remedied by therapeutic massaging. Have you ever heard of restless leg syndrome? This reminds me of that, a little. Sometimes I can’t sit still because of it – I get on the floor and stretch as much as possible and rub in little circles. Maybe I can describe it as a tightness and an inner ache… Fun fact: when I was pregnant with our third, this occurred daily between 4-8 weeks.

Discharge – Think of all the varying smells and colors or textures. Enough said? Who knew there was so much stuff that comes out of you? Throughout my cycle, the discharge I experience changes. Additionally, I noticed almost NONE of this before having babies. Sometimes I’d describe my discharge as egg whites. Other times it’s just wet, and not from sweat. I’ve learned more about “what’s normal” with discharge from the Glow app. Even though we’re not keeping an eye on my fertility anymore, I find it comforting to see “normal” symptoms and changes throughout a woman’s cycle, and I can refer back to previous months to review what I’ve experienced. 

Headaches – This one has been a long, long road, for me. I think I’ve always had headaches, even as a kid, and especially around my cycle. But when I say headache, I mean these are probably migraines. In fact, I’ve seen a neurologist who confirmed they were, and he put me on Topomax (which I stopped within a month; it made me feel loopy and I still got my headaches while it was in my system). 

Usually, “my headaches” start with a change in taste. I wake up groggy and take a sip of coffee which I typically enjoy every morning, and I notice it tastes more bitter than usual.  Then I notice a dull pain in my right temple or an ache across my sinuses (between or above my eye brows). Often times, my nose is stuffy and mucas drains down the back of my throat (rhinitis) or I’m blowing my nose, often. It can feel a little painful to blow my nose. Sometimes, my mucas is bloody. Then comes some nausea, and sometimes the ache travels to the back of my neck. At that point, I see a little cross-eyed and if I’m at work then I have a very hard time focusing on the computer screen. Before I started treating some of my symptoms in my current routine, I may have at least two and sometimes 5-6 of these types of headaches per month, at varying degrees of severity.

I remember a birthday when I had had enough of a headache I was fighting. I had tried rotating Tylenol and Ibuprofen, I had drank as much water and caffeine as humanly possible, and I had doused myself in peppermint oil. We were all excited to be at a new restaurant in town, but I caved and asked my mom to drive me home – this was just five years ago, and we had two little boys at home! I told my husband to stay, and everyone had a nice time celebrating my birthday without me. There have been many times when I’ve set toys out and pinned my kids in the same room with me so that they wouldn’t get into too much trouble and I’d lay on the couch while they played around me. Sometimes, they’d sweetly lift the pillow I kept over my head to kiss me. I’ve spent hours alone in our bedroom with a weighted eye mask on while my husband took care of the kids and they made memories without their momma. (Zach says this is an over exaggeration, but thats’s how it feels missing out on their fun while I attempt to recover from one of my headaches).

It wasn’t until 2018 (nine years in ) that I started seeing a linkage between my headaches and my cycle. I stopped birth control, altogether. And wouldn’t you know? The severity and frequency of my headaches calmed down, too. Unfortunately, one of the “treatments” for endometriosis is taking a progestin-based contraceptive in order to level out your hormones production. For me, migraines just aren’t a trade off I am willing to make. So, I am seeking other relief from my endometriosis.  

Nausea – In watching my monthly cycle and cyclical symptoms, I feel I can confidently state that the nausea I experience is directly related to the “rush” of hormones being produced in my body. I usually feel most nauseous right after I ovulate. Possibly, it comes from endometrial tissue that has traveled to my bowels? I often have a sickening feeling after I eat (anything)… Which leads me to my next symptom…

Diarrhea – I mostly experience diarrhea right when my period starts. If you didn’t know, period poops are a thing! My body just lets go. My cycle definitely impacts my bowel movements, overall. I usually have very different poops between day 1 and day 26 (or 27, or 29, etc.) of my cycle. I’ve also experienced diarrhea before or after my awful headaches. So, I used to think diarrhea was a sign of a migraine. But, as the years have gone on and I’ve continued to observe my body like a science experiment, I’ve decided that my hormones skyrocket, I get a stuffy or drain-y nose, I get diarrhea and/or a headache, and then I’m in bed for a few hours. 

Bloating and painful gas – My sister and I have always joked that we’re the gassiest gals! I can remember letting them rip confidently when we were much younger. But now I don’t laugh about it so much because this stuff can get painful! There’s not a ton for me to say about it, but again it usually happens after I ovulate and as my body is preparing for menstruation. My bowels can make some noisy rumbles! I have not tried gas-X or anything over the counter for this issue, nor had I really addressed it with a healthcare professional. I kind of just say ‘it is what it is’.

Cystic acne – If you have acne, I can promise you that you don’t know real pain until you have these seemingly tiny, red welts! Though I do get these on my chin (again, ovulation), the worst are on my upper back and around my neck. I’ll think I have an itch and I’ll reach back to scratch it and I’ll end up doubled over in pain! These hurt. I remember back in early college starting to get these fun little bumps and I saw a dermatologist. She recognized these cyclical little bumps and put me on birth control for the first time. My skin cleared! And I stayed on that little pill for “skin reasons” until I got married and continued until we were ready to have our first baby (almost 8 years, total).

Anxiety and depression, mood-swings – This is maybe the hardest symptom to talk about. There are so many layers to it, and our culture doesn’t recognize mental health as something legitimately worth discussing. It’s still so taboo. And, it’s a scapegoat for many. “I’m just so anxious” or “my anxiety is through the roof” are expressions girls in my circles have used off-handedly. Honestly, I didn’t think it was a “a thing” until after our second baby when I very obviously had postpartum depression. When you’re stuck inside and convinced that your hardships are uniquely problematic and you don’t have any outlets aside from a new baby who needs-needs-needs, I think any one of us would have a hard time and feel pretty crazy. 

As the sun would set, I would feel the walls caving in around me. Those butterflies would make their way from the pit of my stomach to the bottom of my sternum and my breathing would shallow. Thoughts of the baby not being able to sleep and me not being able to comfort him would leave me feeling completely unhinged. Immediately I’d be nauseous and I’d neglect any dinner. My throat would tighten and I’d start to panic. 

Every night, this would happen. But, I found help. Not from my OB, though. That little questionnaire and Rx for anxiety didn’t help me. What helped me was talking to a therapist. I came to terms with my fears. I practiced yoga, regularly, I got additional exercise. My husband forced us to eat well, leading by example. I also started to allow myself to FEEL all of the hard stuff and say “O.K. I feel this. So, now what?” I took ownership of my feelings and my body and I recognized the normalcy of it all, even if no one else talked about it. 

As far as anxiety and depression and mood swings are concerned, my least favorite part is how negatively my on-going battle affects those I love. Sometimes, I yell at my boys with such ferocity, I don’t even know my own voice. The sad looks on their faces leave me feeling like a monster. Though never my intention, it feels uncontrollable. And then there’s my husband – he gets the brunt of it… as my best friend, he’s on an unsolicited journey with me, indefinitely. 

Knee pain – Remember I how mentioned earlier in this post that endometrial tissue can travel and affect other joints? Well, my right knee hurts at various points throughout my cycle, but especially leading up to ovulation and when there are cold weather changes. Potentially, I may have some arthritis. I danced for over 15 years and I like to be on my feet rather than sitting still, but I only recently took to running when gyms closed due to Covid-19. I noticed this knee pain about five years ago and, as I’ve said, it comes and goes in conjunction with my cycle.

Allergies, bloody nose – Every time I found out I was pregnant, I got a bloody nose. Now, as my endometriosis has progressed, I can even get them on a regular basis. I have always suffered itchy eyes, itchy throat, and itchy inner ears. I’ve been on a daily Zyrtec (it was Allegra before that, and Claritin before that) for over five years. I went a whole year of starting my day with a shot of apple cider vinegar and local honey. I started allergy shots through a clinic in 2015 and after another round of testing they’ve determined it’s time to ween me off. Have they helped? I think in part, yes. Am I cured? No way. But the main goal – minimizing or eliminating headaches and minimizing or eliminating my post-nasal drip – has been successful. 

Delayed or early period, spotting  – I guess I just always gotta be at the ready! Being on birth control for so long, it was nice to always know when my cycle would be starting. Wouldn’t you know that at 34 years old, I am back tot the beginning in being surprised with when flow will show. Most of the time, my period symptoms will begin around day 25 including a little spotting and when my period is complete around day 30 the spotting may continue to day 35.

And, there you have it. An almost inclusive listing of my monthly fun! Interestingly, some of these symptoms are the very symptoms that point to early signs of pregnancy. Which is a dirty trick because endometriosis can also lead to fertility issues for some women.

All-in-all, I have come a long way from the beginning of my journey with endometriosis and I have allowed myself to listen and observe my body and understand it better than I ever have before. Some of that has come from child birth. More maybe has come from my various surgeries (I learned that I also have Adenomyosis after my third). But a lot of it has been a forced self-discovery. If any of my experience is able to help others, then I am glad to have paved the way. And, if you have wisdom to share with me, please do so! I obviously can use all the help. 

If you’re interested in learning more about the signs and symptoms of endometriosis, I’d recommend http://endometriosis.org/