Wow. 2020 has been a BITCH.

Ive been wanting to write this post for a bit now, but, as always, LIFE took over and I just kept putting it off….. Its long yall, bear with me, pull up a chair, grab a cup of coffee…. If you know me, then you know Iv been going through it this last year, so here is why.

I feel my story NEEDS to be shared, especially after conversations with my fellow LADIES, and there NEEDS to be a change in the way we take control of our Medical Care…. I wont go to into that to much, but this is a post that any of you women who have an IUD MUST READ!

Let me start at the beginning. Here we go. Highlights folks.

Last January I got a UTI… It seemed super random to me, Husband was deployed at the time, and the only one I have ever had was during our “Honeymoon” 11 years ago. (if you get these, you understand!) In January I was treated at our local Clinic on Base here in Japan via urinalysis, which showed a very minor infection- I was given Micobid and sent on my way… However, it never fully went away. Most days I felt fine, but others not so much. I started taking Cranberry with DMannose daily, drowning myself in water, hoping that would help flush out anything leftover, especially since I didnt want more antibiotics if I could help it.

By early Spring, Covid was happening. Husband was getting ready to come home from a patrol and I was not fixing to welcome him with no LOVE. ;) So I called the ER (no Doc Appointments due to Covid) told them my situation, and was prescribed another round of Macrobid. (never saw a Doc, just pharmacy P/U) I figured this would squash it. A week later, Im still in pain. Yey for Dear Husband… womp womp. I couldnt wrap my head around what could possibly be wrong with me.. Im a pretty healthy Girl! The clinic informed me they would do a Phone Consult since they still couldnt get me in to see someone. After waiting hours past my scheduled appointment time for the phone to ring, I finally discussed the situation with a new Doc, to be told that its normal for pain to persist post completed meds. Ok. I took his word for it. The following week, I felt like I had a full on UTI again.

Im starting to stress. I began having sharp pains in my pelvis and back, my 25 day cycle had shortened down to 20, and was majorly heavy- this tho isnt too terribly uncommon for me being that I have Endo, however I thought it was due to the anxiety settling in. Husband convinced me to get my ass in the car and go up to the ER again, so I did. I explained to the nurse that I was still having Dysuria and painful urination- she went over my labs and informed me that I was given the wrong anti-biotic for the type of bacteria found (since the prescribe right then and there instead of waiting on cultures to be sent off), so was switched to Cipro. Never saw a Doc, just the nurse, again. This Med did nothing. At this point, Im in intense pain, bed ridden by it- No energy, sick from the meds, and becoming depressed. I put in an ICE complaint with the Hospital, and basically demanded an appointment with my actual PCM. In Person. Being that we didnt actually have Covid here, you can only imagine my frustration that I couldnt see anyone until this point!

ICE complaints work Military friends, I had an appointment within days. This is now May.

My Appointment with my PCM went ok- He asked me to start at the beginning and apologized for all that I had been through with lack of care to this point. He decided to do full labs and a vaginal exam, including PAP- then we discussed possible diagnosis. He told me he felt a prolapse with my uterus, (ok, Ill take that- I have a retroverted uterus and 4 kids) which could be pressing on my bladder causing the urgency to urinate and possible cramping- Then we discussed things like IC, Fibroids, etc… Granted this is a GP, so I just listened and pressed for a care plan… When you live on a tiny base in a foreign country, this means having lots of patience, riding along with the guess work, and going out in town—- I was sent home with a new prescription of Pyridium to help with the pain and a referral to GYN at a local Hospital for an ultrasound to see how bad the prolapse was…

This go, my Labs came back clear, showing no infection, yet I thought I was dying. The pain in my pelvis and bladder area was becoming unbearable, to pee was excruciating. I only had 10 days worth of Pyridium (which did take the edge off), but after that was out of my system it was back on… It took weeks to get in with GYN, and my Doc was not returning my calls or emails on what to do in the meantime… Im not this kind of person, I dont do Meds, I dont even go to the Doc if I can help it, but I was DESPERATE. Desperate for some kind of relief, and desperate for an answer.

In June, I was finally going to be seen by GYN- Im still in so much pain most days while waiting for this appointment, that finally more labs are done, per my request, which showed a bad recurrent bacterial infection. Im prescribed LevoFLOXicin (4th Antibiotic) and another round of Pyridium, via voice mail (never saw doc). On day 7 of this drug Im feeling super sick and dizzy, but am informed to continue with it, after bugging the nurse again- we need to kill the infection. Im angered my Doctor never called to inform me how bad the infection was, (Ida taken an email at this point!) or that the pharmacy or nurse never bothered to discuss the mondo side effects that could occur with this drug. Not cool folks. Lucky for me I only had slight vomiting and major hair loss (although that was probably more from all the shit I was on and stress to this point) Hence my most recent hair cut ;)

My appointment day arrives- I met a translator who escorted me to the hospital. My visit went quickly- No exam room really, you are directed to a desk behind a curtain in the lobby, discuss your problems through the translator, and are told to sit in the waiting room again. I did gather that it would be a trans-vaginal ultrasound, then prepped by my sweet translator of what that entails here in Japan… Holy wow. Very different then the states friends!!!! I was escorted to a tiny closet space, with a very scary exam chair- think flesh colored Dental seat with a hole cut out in the bottom, metal bucket underneath… They gave me a washcloth to cover up with, and said “ just sit still, the chair will do the rest.” WHAT??? It automatically turned, laid me back, and spread my legs under a curtain behind me- Hello Doc! (And everyone else I could hear walking and talking behind that stained sheet!) So damn uncomfortable. Exam only took like 2 minutes tho, and bottom line, NO PROLAPSE. (Lots of painful pelvic floor Yoga to waste!) Enlarged uterus was detected and she saw something in my bladder. Told me that a hysterectomy would be wise with my endometriosis, but that I needed to see a Urologist, and Soon. Went home. Cried the whole way.

Now Im scared, really really scared.

I made a follow up with the PCM. Im now peeing blood. He honestly didnt give me but 3 mins of his time. He didnt know what to do with me and would be moving soon, so I was just told to wait for a call from the Translator for an appointment with a urologist. Good bye. 3 days go by with no call (time I was told to wait) so I call the translator. She says the referral was put in as ‘Routine’ and could take up to 6 months for an appointment. As you can imagine, I kinda lost my mind, jumped through some more hoops, waited with no response from my Doc, annoyed the crap out of his nurse, and made it URGENT. Then immediately drove up to the clinic and changed my PCM. I knew who I wanted, my neighbor- a Doc I saw last year when I thought my left ovary was going to Pop! I knew he would listen to me, and his kindness would calm me.

My mind at this point is completely overwhelmed… Me and Andrew are google Doc’ing, because how can you not, and talking with nurse friends and family, asking for any advice and help. I begin herbal meds, like Horse-tail and CBD oil- giving up all spicy food, citrus, and salt. Dove into more meditation, anything to try and keep me collected. Husband holds me and cries with me while we discuss the worst it could be. Cancer. ‘Dont go there babe, we got this. Im here with you.’ But when your literally peeing blood, and your body is sweating in pain, what else do you honestly think? I cant fly home to the states and just see some specialists due to the pandemic, and all I could think constantly is “I want my Mom” who couldnt come to me. It felt like my own personal Hell at some points.

I had my next appointment with my new PCM within a week. He went over EVERYTHING with me. He explained my labs and levels, which hadnt been done at all to this point, looked at my ultrasound photo from GYN and said it was a possible foreign object. Thats impossible tho…. So im thinking the worse. He gave me personal contact info for him. Then he confirmed my appointment with urology and calmed me down. He told me not to think Cancer- its rare, im young, no way. I honestly felt like I could breathe again, at least for a minute. Thats all it takes, someone on your side. A fellow advocate for your Health.

Now lets get to the crazy———- What was wrong with me???

July, Im completely fucking panicked. Husband is getting ready to leave for another patrol, and Im not well. AT ALL. Im in ridiculous pain, all the time, and more time has passed with no answers. We have a hiccup and have to cancel my awaited Urology Appointment. My cycle is all over the place… Im at 19 days, with 7+ days of bleeding… Its out of control. So I have to reschedule. They cant see me if Im bleeding. Im devastated. It takes 2 more weeks to get in with them, but Im set to go just days before Husband leaves. We are talking with his command, discussing a possible emergency situation where he would have to stay behind. I have 4 kids, who is going to care for us? Do we have to cancel our upcoming move to Sicily?? My mind is racing. Its an insane time. But I put on my Big Girl Panties and meet the translator. Lets do this.

Urology is in another hospital, and its nicer. Im pacing the lobby, watching Flood coverage on the Japanese news, and holding my pee. You have no idea how painful this is. Im physically shaking in pain. But have to have a full bladder for the ultrasound. The nurses see how bad off I am and get me in asap. The doc takes a look, belly US, and sees something large. He says something in Japanese I dont understand and I bolt to the restroom. In the hall, my translator holds my hands and tells me he needs to do a scope to see what is going on, he found something. She looks concerned, yet tells me its all going to be Ok. I wait an hour.

This is the longest hour of my life. I call husband who leaves work, checks on the kids, and rushes to the hospital. Its bad, I just know it. I call my best friend, who is a nurse, and who tries to talk me down from the cliff im dangling on. I cant breathe. They call me back for the scope just before DH arrives, I dont see him. We just miss each other. I needed that Hug.

The translator is with me, talking me through every step. I undress, lay down on the table, and get pink bunny long socks placed to keep me warm. Japan. Then wait about 15 mins for the Doc. They are playing amusement park music softly in the room. Japan. Its not that bad so far, But I still cant breathe. he comes in and explains the procedure (with arm gestures and my translator explaining the best she can)- scope tube thingy with light and camera up the urethra- Honestly im in so much pain, I hardly feel it. Upon insertion, he grabs the computer screen on the rotating arm from behind my head and says in broken English “SEE! Foreign object!” Banging his finger on the screen. And I took a breath. I dont have cancer. I dont know what the hell it is, it looks like a battleship in the bottom of the Ocean. Metal and white and tarnished. My mind fills with C section surgeries Iv had, did they leave something in me?? I dont have time to contemplate, its not CANCER. I let out a sob and say “Ok, when do I schedule a surgery to remove it??” He says “Ichi, Ni, San” (1,2,3) and rips it out. Through my Urethra. No warning. I scream and literally levitate off of the table. They heard me in the waiting room. He holds up his hand with the scope in it, and says “Stint!” Eyes wide a saucers.

Nope. IUD.

And we still arent done. I immediately feel relief in my stomach and bladder. But there is more. There are two long pieces of metal, and he cant get them with this scope. He needs the bigger one. Ok. Yey. lets do this.

I get dressed, and go out to the lobby to wait another hour while they set up another room. Im greeted by Husband. I almost faint when I see him, but tears and smiles are all I have. “Babe, you wont believe this shit!” I cant even describe the relief felt. Its the most overwhelming thing. We call friends and family who were waiting by phones and tell them Im going to be fine. I call my kids. I cant stop crying.

Nurses bring me back and prep me for the next cystoscopy, this room is high tech and no joke. My translator is freaking out, keeps telling me how brave I am, how am I doing this??? Yeah, no pain meds in Japan for this kind of thing, but I couldnt have cared less, you could have ripped off my arm, I am going to be fine!!!! Bunny socks. Dimmer lights. This scope was bigger, and I defiantly felt it. My urethra tube was inflamed- raw. There were two 1.5” wires woven through my bladder wall. Each one, “Ichi, Ni, San” Deep breathe and RIP! We got it all out.

The Urologist had never seen anything like this before, ever. I explained it was my IUD, planted 9 years ago, which I was told was expelled weeks post insertion. Um nope. It had worked its way up through my uterus, growing through my uterine and bladder wall. The infections I was suffering from had become completely immune to all antibiotics, they had adhered to the IUD itself. I was told I was lucky, I could have a hole in my bladder, which he checked again for, I could have gone septic from the infections. He was surprised I was standing there. I was prescribed another round of Levo to kill off anything left, informed about and how to watch for Sepsis, and told to come back in a month so he could check up on me… We bowed, I cried and thanked him so so so much, and he sent on my way.

I could have done jumping jacks out of the Hospital. Although my tuti was throbbing, I felt fantastic, instantly. You can only imagine the elation washing over me, and Dear Husband.

We spent the rest of the day talking over the timeline…. I had the Mirena IUD planted 5 months postpartum with my 3rd child. 9.5 years ago. A couple months later, a Pelvic exam was done, it was never found. I was told I must have expelled it, it was placed to early after having a baby. I never thought of it again. I just started a new BC. Since then, I have had some major Hormonal problems. Hydrosalpinx (swollen and blocked fallopian tubes), large ovarian cysts, crazy cycles, continued talk of my Endometriosis, hormonal treatments, and discussions of Hysterectomy (starting at age 30!) I changed my diet, plant based, then to vegan.. helped a lot, but still had issues over the years. Gave up Gluten. We had moved overseas and back, and through so many Military hospitals I had seen multiple Doctors. I had another baby, beautiful pregnancy, natural c-sec and salpingectomy, where the IUD was never seen. Breastfed for 3+ years. In all this time, the hormonal imbalances, the pelvic pain, the effed up cycles, it was all passed off, different diagnosis, different rations of what my body was doing and going through at the time. All the while, I had this thing moving around causing Havoc. But here is my point. NEVER did I think of that IUD. In my Medical Record (because Im a Military Dependent) its not listed. I had it placed by a Doc out in town. So why would it EVER be considered???

This is my suggestion, to you Women out there.

If you have had, or have, an IUD, and it has not been physically removed before your very eyes, be an advocate for yourself and put it at the top of your Med Record! Right under “allergies and Meds” RIGHT THERE!!!!! Dont take word from your Doc that it has been ‘expelled’ at some point since it isnt where its supposed to be! What happened to me is Rare, EXTREMELY, we havent found another case like it yet, but they do travel yall. And when they do, they are dangerous. Its not known how much of the drugs in it were pumped into my body, at different phases from being dormant to not, all the while Im on another BC or hormone treatment before having my tubes removed.. Also, since mine was an original Mirena, those wires were metal. Imagine pokey metal wires just moving around in your middle. Not good.

Seeing my new PCM 2 days after the IUD removal was almost fun. I couldnt wait to tell him. I skipped into the exam room. His Jaw hit the floor. He did do some blood work, and all of this has left me Iron Deficient Anemic. Explains my sudden heart palpations and extreme fatigue. My cycle is slowly starting to try and find normalcy, but im still at only 22 days. Still may be looking into a hysterectomy. Between the bleeding and recovering from the drugs, Im now taking Iron pills to help rebuild my stores, and adding even more Iron to my diet. But thats the only problem Im left with from this. So lucky. And Im feeling extremely better.

I have learned so much from this experience. I AM the ONLY advocate of my body. Being presently aware of this is crucial. I know it better then any Doctor ever will. I have to take charge of the care it receives, and not take answers I dont feel are right. All situations are different, but listen to that gut, that intuition. I knew something was wrong, yes, I went to the worse in my mind, but I didnt let it go. I made someone hear me.

Im going to End this super long story by just thanking those around me these months. My mom and mother in-law and friends who listened to me, helped me when depression began to take over, who talked me up when I doubted my strength. To my amazing kids who pitched in even more around the house, taking care of each other (I feel like I lost precious time with them.) And by GOLLY, my husband. I dont know how I could have made it through this without you by my side. Most days I hid it the best I could, I cant handle being weak, knocked down… But now looking back on this past year, Im humbled to know I CAN ask for help, count on others, allow people in, and Speak UP.

Please share with other Women and Nurses, and be careful with those IUDs Ladies. Check them regularly!!

Till next time- xoxo