My Endometriosis Story

Having a chronic illness is cool. Having several is even better. It’s especially fun when you think one of them might be gone and then it REARS its ugly head yet again and brings you right back to square one, living Groundhog Day all over again. So let’s talk about my Endometriosis story, which I think is pretty darn cool (sarcasm) and all wrapped up in my anxiety as well! It’s pretty crazy to look back on one’s childhood and see how it all intertwines. Stick with me, it’s kind of long. Apologies ahead of time cause I’m not even attempting to polish this turd.

The Early Days – it’s all about NASA, duh

Looking back, I can now pinpoint exactly when I believe my story started and it all ties back to one of my body parts: my bladder. I wrote about some of this in my novel, although not the Endometriosis part, so let me paint you a little picture.

I’m ten years old, on a trip to Florida with my extended family (and I have a big extended family with lots of cousins). We go out to eat at a Chinese restaurant and are on a little side quest from our normal vacation because we want to check out NASA/Cape Canaveral. At the restaurant, I’m drinking a LOT of soda, cause I don’t often get to drink it. Meanwhile, my parents and aunts and uncles are approached by a random dude who hears them talking about NASA. He offers our entire family tickets to see a shuttle lift off which is happening THAT NIGHT. Of course everyone accepts his generous offer and off we go. This is back in they old days when you could pack a passel of kids into the back of a pickup truck with a cap and think nothing of it, so all of my cousins and I are jammed into the back while the adults are driving or in separate cars (my parents and others are in separate cars).

On the way, I suddenly realize the the soda is coming through strongly and it’s painful. I don’t want to ask them to pull over cause I’m kind of a shy kid and I don’t want to make a fuss, plus I know my cousins will razz me unmercifully if I have to pee on the side of the road. Eventually it becomes unbearable and I have to ask someone. So we pull over on the highway and I get out of the car to go to the bathroom with the alligators and crocs, or whichever one lives in FL. (ha!). My dad stops to and comes over to make sure I’m okay.

I get back in the truck and the moment I sit down and the truck starts to move, I am panicking HARD. Like full blown out of body panic attack, face turning red, heart thumping wildly, sweat pouring, stomach twisting anxiety. The first full blown panic attack of my life. Best of all, I have to pee AGAIN or at least I think I do cause it feels like I have to. I know I absolutely can’t ask them to pull over again and already my cousins are asking me what’s wrong with me, telling me my face is red and snickering etc. Fun!

For the rest of the trip as we later tour Cape Canaveral/NASA over several days, I am on the edge of panic the entire time and all I can think about is my bladder. What is the status of it? Do I have to go? I probably should go whenever the tour bus stops even if nothing comes out because it feels like I have to go. It never stops feeling like I have to go. It becomes pathological in my mind. I’m obsessed with how my bladder feels. Constantly scanning my body for signs of needing the restroom.

Fast forward a year and I start my period about a month or two shy of my 12th birthday. The cramps come on strong. I am also still panicking about my bladder on a regular basis, especially on the school bus. For all of my teenage years, I have decently rough periods with a decent flow, but nothing crazy as far as over the top bleeding. I do always have cramps. I am also always panicking because what was once a fear of the bus, now becomes fear of any situation without immediate access to a restroom and the fear that I’ll embarrass myself in front of my peers.

Fast forward again to 18 where I finally get on birth control because I now have a long-term boyfriend. Angst (my novel) does a pretty good job of describing what this time was like in my life.

Discovering the Truth – wtf is Endo?

I get married at 27 and at 29 my husband and I decide to start building a house, doing much of the work ourselves and I’m acting as general contractor, handling all the paperwork, finances, scheduling and more. This is 2011-2012. During this incredibly stressful and often physical time, I also decide it’s a good idea to stop taking the pill that I’ve been taking since I was 18 years old. I’m still often panicked and stressed and it still revolves around the bathroom.

Once I’m off the pill, I quickly realize that my periods are rough. Lots of pain and cramping and unpleasantness. A few months into being off the pill, I am not pregnant and I start having painful urination with my period. I get checked for a bladder infection and I don’t have one.

Several more months go by and I’m still having bladder pain with my period, to the point where it burns and I have what feels like an internal Charlie horse of my bladder, just tremendous cramping pain that leaves you gasping. Finally I see another doctor and they tell me that I could maybe have Endometriosis. What the hell is that? I had never heard the term before. Not in health class, not with friends or family. It’s a completely new thing to me. But as I do the research I think…yes, this is what’s happening to me.

My gynecologist doesn’t believe I have it, my periods are too light, I don’t bleed enough. Okay. A second opinion makes me cry because while she seems to listen to my symptoms, the moment I mention my anxiety, suddenly she believes the pain I’m feeling is all in my head and due to anxiety. But I know my anxiety and I know this is different. I get back on the pill and the pain gets better. But then blood shows up in my urine during a urine test.

Off to the Urologist for a cystoscopy to check inside my bladder (a most unpleasant experience, at least for me). On initial view, there is a bulge/discoloration where my cervix is hitting my uterus. Suspicious, but not definitive.

Eventually in 2013 I do have exploratory surgery and I do have Endo on the outside of my bladder. They don’t excise it, they just burn off whatever they find and sew me up. I’m on my own again with the pill.

I do try again a few times to get pregnant, but I can never seem to do so. We start light fertility treatments, but my anxiety is off the charts, so we stop. I just can’t get past all the intervention needed and all the doctor’s appointments.

Eventually blood shows up in my urine again and I’m back at the Urologist for another cystoscopy. The view this time is a black spot inside my bladder. The Urologist has never seen anything like it before, but luckily it’s not cancer. Unluckily for me, she does not take a photo of it.

I make an appointment with a specialist, who I wait to see for a while. I send in documents ahead of time and am told they will be reviewed before my appointment. I get into the appointment and the doctor has clearly looked at nothing I have sent ahead of time and just starts spouting off about all the horrible drug treatments they can give me to start a temporary menopause.

He keeps blathering, clearly enjoying the sound of his own voice and I can’t get a word in edgewise to tell him that I need to have surgery because I have Endo that has moved through the bladder wall and is now seen inside my bladder. Even when I finally tell him, he doesn’t care or believe me because I have no proof and my appointment time is effectively over. I write him a strongly worded letter afterward. Fool.

I force myself to go back to the Urologist, even though the camera they shove inside is VERY painful to me (I also have extremely dry skin, partly due to the low-estrogen birth control my doctor has prescribed to tamp down on the Endo pain). In the interim throughout this period, I’m also having pain in my abdomen that I can’t explain but that is not letting me sleep. Nothing works to calm it, even though I am popping IB Profen regularly. (which is also horrible for you)

The urologist sees the same spot, but bigger and I ask her to take a photo so that I can bring it to the next specialist I am due to see within a few months.

Finally I get to that new appointment at a very big hospital nearby and the surgeon agrees that I likely have endometriosis that has moved into my bladder and agrees to do surgery. This is 5 years after my first surgery.

Surgery #2 – excision for the masses

So, day of surgery, you can imagine my anxiety. We drive 2 hours to the hospital, then wait around a while longer and finally it’s time. I’m so nervous. The surgery goes well, although afterward, there is no order for me for pain meds and I wake up writhing in pain and have to wait at least 30 minutes for them to get someone to prescribe me the meds I need. Luckily for me, I’m so groggy that I don’t really remember it much afterward other than writhing and crying out in pain.

When I finally wake up I hear they have removed my appendix which had endometriosis on it and they have removed a piece of my bladder and I now have a catheter for 10 days. The appendix must have been the unrelenting pain that wouldn’t go away!

The catheter is not fun, nor is recovery. You truly feel the weakness and frailty of your body and it’s a scary feeling. I called the catheter bag, my piss bag that I carry around like a purse. The only blessing from the whole thing is that when we drive back home which takes over 3 hours in rush hour traffic, I don’t need the restroom at all. I’ve got that covered. I do feel for my spouse though who didn’t have the same luxury.

Ten days later, I’m back at the hospital for them to remove the catheter which is just as painful as the Urologist cystoscopy. I may or may not scream when they remove it.

But I’m on the mend now…it takes time, but I am feeling better. For several years I think…I don’t have Endo anymore! I try to forget about it. Several times I try to talk to my doctor about getting off the pill because the side effects are super annoying to me, but she won’t hear of it. “You don’t want to have surgery again so you need to stay on this until age 52 and then you’ll go through menopause.” Sigh. I wish it wasn’t the case because it is causing all kinds of symptoms like very dry everything, low libido and I believe it later contributes to mineral loss and the need for electrolytes and other supplements.

More Diagnoses – come join the party!

In the meantime in short order, I am diagnosed with chronic dry eyes and put on an everyday prescription eye drop and soon thereafter I am also diagnosed with Fibromyalgia due to chronic unrelenting pain that occurs all over my body, usually related to what I assume is muscle, tendon and maybe nerve pain. It feels like I’m just constantly injured!

Over the years, I’ve since decided it’s more likely that I am experiencing a heightened awareness of pain, probably due to surgery and Endo pain for years, but also it seems likely that there’s something wrong with my fascia. It’s very dry, tight and can be unyielding, making it difficult or me to even breathe at times. I’ve described it to my family as a skin suit two sizes too small that can feel very restricting and painful. I have to watch how much activity I do, too much and I’m in pain, too little and I’m in pain. I’ve come up with a lot of coping mechanisms for this pain over the years which can make me feel very stiff and makes sleep difficult.

I’ve also toyed around with the idea that I may have Sjogrens, but I’m not entirely sure of the cause of my dryness and am still investigating. Perhaps being on the birth control pill for over 20 years with many of those years on a low-estrogen pill have simply put me into a sort of quasi-perimenopause? I have also experienced many other negative side effects of this pill, that everyone says is oh so safe, including I believe additional anxiety and some pretty severe depression and suicidal thoughts.

Now we get to the last few years. I’ve got fibromyalgia, I’ve also had some weird symptoms (hot/cold flashes, being unable to control my body temperature, chills, sweating etc) that are resolved with taking more salt/electrolytes with my water among other weird things. The Endo pain for the most part has been absent, other than occasionally twinges when using the bathroom, which I’ve been able to effectively ignore. I DO NOT HAVE ENDO ANY MORE, RIGHT??

I also develop severe spells of dizziness over the years. It starts lightly, mainly after boating or car trips but it goes away pretty quickly, but soon after a flight to FL and a boating trip, I am extremely dizzy and it lasts for months. Now it seems, I can no longer travel without this happening where I have to suffer extreme dizziness, like I am drugged or drunk and spinning after every trip. So I somewhat curb my traveling which was never a lot to begin with because it is very very difficult to function when you feel so out of it and extremely tired for months. I do still have a job to go to every day and no one gives you a break!

Groundhog Day – where we relive things all over again

But…now we suddenly get to the crux of the matter yet again. There is blood in my urine. I haven’t had a urine test in many many years, probably since 2018 and honestly I’ve tried to avoid it because I am terrified of the Urologist and anything to do with my bladder. I had told myself after my 2018 surgery, never again will I see a Urologist. I hate the Urologist and all the pain they represent. I have felt that these people have hurt me. A form of PTSD perhaps. But I find many doctors can be uncaring and cold and your pain can be easily dismissed as it has been in the past by Urologists and others.

After the first urine test that comes back positive for microscopic blood, my primary care doctor, orders another test as the blood could have a simple cause. The second test about 5 weeks later still has blood in it. I’ve also been feeling terrible. I’ve had a very dry mouth and been unable to figure out why. Dryness attacks have come in regular intervals usually due to a vacation or holiday where I’ve had several alcoholic drinks over several days and have taken anxiety medication here and there. My hydration status may also have something to do with it.

The extreme dryness moves around, sometimes my mouth is very dry, sometimes my eyes, sometimes my pelvic region. All the time, I have dry hair and scalp, dry skin, dry feet (corns on my feet too), painful cysts where any chaffing occurs. So this is driving me absolutely crazy. Every time I have a body issue, I try to figure out WHY is this happening to me? What is causing it? What can I do differently to make this stop? It’s not like it’s killing you outright, it’s driving you stark raving mad with a thousand paper cuts. Everyday there’s a new thing to make you crazy and everyday your life becomes smaller and more limited. No more alcohol, less anxiety meds, more anxiety.

So I decide to go off the birth control pill without consulting anyone. I must find out what side effects are from the pill and which are something else. My bloodwork does not show Sjogrens, however it’s possible to have it without the proper bloodwork markers. My doctor sets up a referral, but I am afraid to go because I don’t really want to do a lip biopsy which is the other conclusive evidence. Also my eye doctor does not feel I have the signs of Sjogrens in my eyes and my dentist thinks my saliva is low/normal.

I’ve been off the pill for a little over two months now and am waiting for my Urology appointment. I am also experiencing tremendous swelling in my pelvic region and a reduced flow and amount of urine almost all the time which at times is terrifying when it’s a trickle. Partially I believe this is Endo belly, but what if my body swells so much that my urethra closes completely and I can’t go at all? I shudder to think of the pain that will be inflicted on my body by modern medicine if this happens. But I can’t see going to the ER. What will they do? I have to wait for my appointment like a good little person.

My urine tests and other bloodwork show that my organs are functioning normally but still I feel somewhat panicked by what is happening. Could it be something else serious or should I be honest with myself that these are the exact same symptoms I’ve experienced in the past, which means that my Endometriosis has returned? A heartbreaking realization to be sure. I thought that once the Endo on my bladder had been excised by a very skilled surgeon, that would be it. If I had Endo again it would be elsewhere, not in the very same spot, causing me to relive my life all over again.

Now I wake at night in a panic, terrified of the pain to come, waiting to see what the Cystoscopy will reveal and I will have to advocate for myself very strongly for pain relief during the procedure where I was ignored in the past. I will not let them hurt me again.

What does the future hold? Another Endometriosis surgery? More lost time in my life? More pain and at an older age? More frailty and fear? There could be other reasons for blood in my urine, so I’m not sure, but it seems likely it’s my old nemesis. What will I see on that scope?

In the meantime, I am dealing with Post Birth Control Syndrome. A body coming off a drug it has been accustomed to for more than 20 years. Each week seems like a new phase with new symptoms. The dizziness has shown up (without flying or boating this time around) as well as headaches, swelling, bloating, pain and yes, still dryness etc. After a little over 2 months, I still haven’t had a period. I am wary of it, because I believe it will be painful. From looking back in journals from my first time coming off the pill to try to get pregnant years ago, I realize it took two months and then the period I did finally have was rough. How naive I was back then? How much older and wiser I am now. I know what I’m dealing with and I don’t like it one bit.

My true question now is…what treatment will I require moving forward? Surgery, medications etc? The problem is that the treatment I thought would solve my problem and help me avoid another surgery has effectively masked that my Endo was growing this entire time without my full knowledge, perhaps letting it get further along than I would like.

I’d prefer not to go back on the pill, that’s for sure, but the jury is still out on what has been causing most of my non-ends problems. I probably won’t know for months.

How crazy is it to think, looking back on my life at a life-defining anxiety struggle and realize that at the start, it was likely due to endometriosis on my bladder that was kicked into gear by the first signs of estrogen in my young body? So much pain, so many years of my life spent struggling, desperate to figure out what was wrong. So many symptoms from medications, so many symptoms still unexplained. Many go their whole lives without surgery or pain and my entire life has been pain, anxiety and interventions.

Don’t get me wrong, many have it worse than I do and for that I am grateful, but it would be nice if the medical community knew a little more about Endo and anxiety than they currently do. Now I get to look forward to perhaps, turning my poor pain stricken body over to medical science once again, because it seems unlikely that if Endo is back on my bladder that I can just leave it there. Especially if it’s on the inside and blood is showing up in my urine. I will likely need surgery, again.

I will keep you posted! This story isn’t over yet.