And so ends the urology mayhem!

Thank goodness I went to the urologist. Not knowing what’s happening and having professionals also be confused is not very comforting, lol. I’m fine with dealing with whatever as long as I know what the heck is going on.

My bladder was CONSTANTLY releasing urine after the catheter was removed. There was no end. I was going through so many incontinence pads. It was so uncomfortable and when there were bladder spasms, ooooh it hurt horribly.

Literally took a month going back and forth to the urology clinic to get everything figured out. My circumstances befuddled my urologist. He has encountered many cases where bladder retention after certain surgeries led to an over-reactive bladder but he just couldn’t understand why I was going through it myself.

The bladder relaxant medication they gave me didn’t help. I still had pain medication from the beginning of the experience so that helped at least with managing that issue. The cystoscopy hurt like hell but they did see abnormalities which brought about the biopsy.

After the biopsy procedure, I went through more hematuria (had this issue several times since the damn catheter.) I’ve been on and off antibiotics until the bleeding would stop. The biopsy revealed that I have mild chronic cystitis with overlaying reactive urothelium and mild chronic inflammation. Friggin mouthful right there, lol.

The results were given to me on August 3rd. Then by August 11th, my bladder FINALLY stopped being weird. I was able to retain my urine and pee when I felt like I needed to. I was so happy I nearly cried.

I’m still dealing with occasional pain from my urethra and bladder. But it’s a far cry from the original pain. There are times when I have to sit for awhile to relieve myself fully. And it sometimes acts up a little when I get constipated. I’m just glad things are healing, however slow it may be.

Sincerely,
Jenn

Urologist

Considering my last post, it seemed only right to search for a urologist. So, I asked my obgyn/surgeon who he could direct me to.

My bladder symptoms are a bit odd. [Reminder] I’m still dealing with bouts of bladder retention, persistent leukocytes, and the uncontrollable, intermittent Niagara Falls from my urethra. Fun times.

My obgyn/surgeon seems perplexed at how my bladder is behaving. He thinks it might be because I’m not producing enough estrogen for it to function correctly. How hilarious would that be? I had the curse of producing too much estrogen for years.

Anyways, he prescribed me some estrogen. He also prescribed me some calmer antibiotics until I can get things checked and resolved. I have an inkling that the sharp, pinch-like pain I felt from the second Foley catheter they had put in me might be playing a part in my bladder spasms and leukocytes. And I still feel that pain despite being catheter free for a week. Especially when I used a self-catheter.

What I’m not sure about, is what’s causing my bladder to be over-reactive? Is it the irritation and inflammation? Is there a nerve messing with it? Or was the removal of my presacral plexus playing into it? I’m PRAYING the urologist my doctor referred me to will help me and find the cause.

I was expecting to wait quite a bit to see the urologist. The lady on the phone said that he wouldn’t be available until the end of July. I sort of panicked and said that my issue seems to be getting worse so if there’s any possible chance to get seen I would take it. First she said she’d put me on the list to move up the line when someone cancelled their appointment. And then she suggested a different urologist. As she was doing so, out of nowhere, there’s an opening for tomorrow morning!

My brain was like GO GO GO!!

Appointment set. Then next issue arose. I was told to bring all my medical information with me to the appointment. Assuming the only relevant information was at the obgyn, I moved quickly.

So I requested, well more like pleaded, if I could get my medical info today from the obgyn clinic. And bless them, they helped me get my stuff same day. I signed the release form, drove over to the clinic when the papers were printed and ready, and paid the fee.

Pure relief. Just complete peace right now that it all worked out in such a short time.

Fingers crossed that tomorrow leads to finding the answers to my urological issues. 🤞 

Sincerely,
Jenn

Physically and mentally worn down after surgery

I had been searching for the right place and doctor to help me with my severe endometriosis. And I did after an OB-GYN at Mayo Clinic referred me to a really good surgeon and colleague of his.

The surgery itself was successful. 5 hours of surgery (laparoscopy, myectomy, and presacral neurectomy) and so much endo and several fibroids removed. Yay.

It’s the recovery that’s been hell. Pain was over the top the first five days and I took the medication they prescribed to work through it. After those five days, I developed a pain that was new. It kept getting worse day by day. And I was having trouble peeing and haven’t pooped. By the end of the week the pain became too much and I began vomiting. I was taken to the ER.

Bladder retention. I couldn’t empty my bladder. There was like half a liter stuck in my distended bladder. They put on a catheter, gave me some pain relief and nausea medication, and sent me home with antibiotics (Nitrofurantoin) to fight off possible UTI.

From this point on it has been back and forth to the surgeon’s clinic where I worked with the nurses to recover. I was stuck with a Foley catheter for two weeks. My bladder kept spasming so they gave me medication to calm it. My urethra was wrecked by the end of it so I started leaking outside of the catheter. I also developed a UTI after stopping the antibiotics meant to prevent the UTI because I ran out and the clinic said I didn’t need more.

Had to go to urgent care when I saw bits of blood in my catheter which soon turned my urine pink and saw sediment. Also because the UTI test kit showed I had positive in Leukocytes. They prescribed me Ciprofloxacin and I’ve been on it since. I had my catheter removed on the 9th and have been trying to regain proper control of my bladder. I was given self catheters in case I start to retain again and to help train my bladder.

Twice in a row now I’ve developed piercing pain in the lower left of my back. I’m still leaking horribly so I’m wearing incontinence pads and when the inflammation gets bad I can’t pee normally anymore.

I’m so tired. It’s been a month of pains worse than endometriosis appearing at random points and my bladder just seems like it doesn’t want to work right anymore. I’m scared. I’m scared things got fucked up because too much at once was done during the surgery. I’m scared I’m screwing up my insides because of the medication though I’ve done my best to use the pain medication sparingly since the ER.

I’m also scared of side effects from all the different medications (antibiotic included) and that my UTI won’t ever disappear since it’s still there and now I have positive for Nitrates in my test. It appears to show trace signs now in leukocytes though.

My belly looks so big because of the inflammation.

It hurts too.

Will I actually get full usage of my bladder back? Will the infection end or medication end up ruining me?

Sincerely,
Jenn

a bit of a downward spiral..

I’ll have a brief uplifting period of time in my life and then crash hard for awhile. Imbalanced hormones really are a headache. Turns out I have to stop taking my Orilissa.

It helped with the pain for awhile but after getting covid19 my body seems super sensitive to it. I took a brief break from Orilissa while suffering from covid19. It was kind of hard to function then and I wasn’t able to keep remembering to take it so I just stopped.

I started it up again after I finally got over covid19 but have been experiencing all of the pills side effects. 😞

The most common side effects of ORILISSA include: hot flashes and night sweats, headache, nausea, difficulty sleeping, absence of periods, anxiety, joint pain, depression, and mood changes.

https://www.orilissa.com/about/side-effects-and-safety-considerations

It’s been two weeks of all that and I feel so drained, out of it and my head and neck are in constant pressure-like pain. I was hoping to keep taking it until the end of the year but I guess I just have to stick to the birth control alone to manage the endometriosis for now.

I’ve been super emotional lately too. Blubbered for awhile last night. I was bitter about the inevitable decline of my uterus and ovaries. I keep feeling pangs of pain that travels from my ovaries to the rest of my lower abdomen. It’s not horrible like it used to be before the major laparoscopy but it’s building up as each year passes.

And my anxiety decided to hit me full force during all this. I’ve been overworrying about anything and everything which just makes me more mentally drained. I probably look like an idiot to people in the process.

There are days when I just wish there was nothing to worry about at all. That my mind would be at ease and my emotions would chill the fek out. And as much as I want a baby, I have this gut wrenching feeling that things aren’t doing so well in my body. By the time I finally get seen by a specialist, will there even be any ovaries left? or will they be consumed by cysts? and has the scarring gotten worse?

I won’t get to know until next year because everything comes at huge price in this world. And we can’t afford anything until we get better insurance.

I’m just so very, very tired of this disease and the heartache it keeps bringing me.

-Jenn

Gidget and Buddy

Yesterday morning was the second blood test appointment for Gidget. Her first test was several months ago, after they had done routine bloodwork before being given anesthesia for her teeth cleaning. They had discovered she has signs of Cushing’s Disease. They did another blood test to see whether or not she was at the stage she could take medication but she was not, so we set up an appointment months later for another test.

Gidget after she had her teeth cleaning and small growth removals.
We gave her a squishy bread collar to keep her from licking or scratching the areas where growths were.

The results for the second test won’t be available until this Wednesday. Here’s hoping she’ll be at a point where she can take medication. Her symptoms (always being hungry, sporadically drinking a lot of water and her incontinence, which is being assisted by her bladder supplements) are still manageable but I do worry as she is now sleeping way more than she used to. Though I suppose that could be her age coming into play but she’s very lethargic for awhile after she wakes up.

Yesterday morning, I did my best to make Gidget feel at ease so she wouldn’t get too stressed on the way over to her appointment. Unfortunately, I didn’t take into account how Buddy (middle doggo) and Honey (youngest doggo) would react to me taking her. Buddy does sometimes fuss when I take Gidget out to the vet but today he wailed like his world was ending.

As the door closed, I could hear him crying out mournfully. Then I heard Honey chime in with her own screechier wails. My poor parents and my poor husband would not be getting anymore sleep. Yeaaah, we still live with my parents; we’ve embraced that filipino family household life because in this crazy ass world it’s just nice to have each other.

Back to the point, I was not aware how strongly Buddy was attached to Gidget. I know he was always drawn to her but they usually give each other space unless they’re all napping. Gidget is also more independent and chill compared to Buddy and Honey and likes to be left alone most of the time.

But wow, Buddy must seriously be needy for Gidget because he apparently continued crying until I returned. No amount of comfort by my husband or my parents soothed him for long. And when he saw that Gidget was not with me when I got back, he was anxious and waited by the door.

Sad Buddy

When it was finally time to bring Gidget back home, Buddy eyed me as I went out the door. I was glad he did not wail. Gidget was in better spirits now that she saw me again and was leaving the vet, lol. She was so ecstatic, she accidentally slapped the vet technician in the cheek and I was mortified. I’m used to that happening to me when the dogs get excited but never had they done it to another person. I asked if the lady was okay and she laughed and said she’d be fine.

Gidget glad to head home.

Buddy greeted Gidget with many sniffs while making wibbly crying sounds the whole time. He stayed close to her for awhile too that evening. Honey on the other hand smelled Gidget and proceeded to bark at her and challenge her. Probably because Gidget smelled like the vets which is Honey’s least favorite place, lol.

I dread the day that we lose Gidget. She’s my baby girl that’s been there with me through so much. And oh goodness, do I have this horrible feeling that Buddy will be devastated. I’m not sure about Honey. Honey follows everything Gidget and Buddy does and has her little terrier moments with them, but I’m not sure how attached she is to Gidget. She’s way more attached to Buddy. *sigh* 😔 I’m hoping we still have a lot more time with my little Gidget.

Sincerely,
Jenn

le triste blog

This poor web space just gets neglected. Only used as a dump for my negative thoughts and experiences. I think there was a time I shared the good and the bad equally??? Maybe???…Heh heh.

I’ve been spending my days distracting myself with games, movies, and online friend hangouts. I’m too much of a hermit now to actually venture out and spend time with folks in person often; not that I could do that with half my friends anyway because they’re spread out across the world.

I’ve been writing a book as well. A new one. The old two I had been writing have sort of fizzled out. Though I still wish to complete the children’s book I had been writing for my friend and her two daughters. This new book I’m hoping to actually complete as well.🤞

I’ve stopped taking my old birth control. My body just wasn’t working well with it anymore anyway. I ended up having enough menstrual cycles that new lesions have appeared and now I’m facing the wretched prospect of another surgery to help save my lady bits.

I started a new medication formulated specifically for endometriosis (Orilissa). It limits the amount of estrogen that my body produces which is one of the bigger culprits of the disease. I’m taking a new birth control with it. This one is safer to take with it as the old one has hormones that would conflict with the new medication.

Starting both was a bit bumpy. My moods were a bit all over the place from the depressive and anxiety phases my brain goes through when my hormones shift. I sort of balanced out after a month of taking it. There are moments where I snap from something that irks me (I calm back down a bit afterwards as my brain goes “Wtf? Chill out”) or I become completely neutral. Empty. Unfeeling. There’s no middle ground. My body goes into autopilot around those moments.

I think I’ve been through so many [over]dramatic emotional phases that at this point my brain and emotions are just done trying to get under control. I’m no longer fighting anything anymore and I’m tired of caring about everything. Even my bitterness doesn’t give a fek anymore. I seem to still have love and longing at least.

But overall, I’m just letting myself float down an ever-changing river that I guess will one day flow into a sinkhole or maybe get run over by a tsunami before I even reach a sinkhole. I mean it seriously feels like something crazy and horribly epic is going to happen at some point. At the rate humanity is going, it could be within the next few years.

It could be anxiety playing into this feeling though. But it sort of feels a little like intuition is mixed into that feeling as well. 🤷🏻‍♀️ I know some part of me still feels concern about what’s going on around me. I’ll break down crying at the heartbreaking news I watch and read, but I don’t know what to do. I have so little hope in humanity. Humanity just seems hell bent on destroying everything good in this world and I don’t know where to begin with helping save it.

So, here I am. Existing. And trying to keep existing because I want to be with everyone I love and care about.

Sincerely,
Jenn

Bitter and very tired.

I seriously cannot handle stressful or unexpected [bad] surprises anymore. My body just throws itself into repeating anxiety/panic attacks. And after my mind and body are exhausted from the attacks, over thinking, and lack of eating, which happens as a wave of depression takes over, I become an emotionless husk for several days. Almost like my spirit just gives up for awhile to compensate for the previous days of internal chaos.

To top it all off, I’ve been feeling so helpless and hopeless the past few years. This world is full of so much damn corruption and greed, that I wonder if it’s even worth being in. I know there are hundreds of good-hearted and selfless people out in the world doing what they can but it’s hard to see the world in a positive light when nearly every corporation and/or greedy mthrfkr out there is doing something that is hurting, harming and/or badly effecting innocent and naïve lives.

I hate greed. I hate people who use others for their greed.

Is it so hard to live within one’s means? Is it so hard to be happy with earning things just through hard work and innovation alone? Why do businesses or heads of business turn to lying, cutting corners, and abuse the system? Why do they end up using or abusing their employees?

It seems a bit random to bring this up but no matter how many years pass, this problem is always there badly effecting the world and the people in it.

I’m very tired of the bad things humans do. And the only thing even keeping me in this world are the people I love, my doggos, and the few good things that still exist on this planet.

Better state of mind 🤞

No more worries about the surgery/laparoscopy bill saga. I was told and given confirmation that the other bill I had seen in the EOBs is only sent to the insurance and never to the patient. I’m not responsible for that other bill. So that was a huge worry off my back. 👍

The other worry was my deteriorating emotional state and hyper anxiety while on birth control. I’ve been on this birth control for nearly 4 years. I’ve always had bad anxiety but the pill sent it into overdrive. For two years I took it non-stop (no breaks at all.) Third year, I tried to do three months straight and go off it for one month like it was meant to be taken. Over time, I noticed my mental state and emotional state were becoming effected by the birth control. After multiple symptoms kept occurring, I realized I wouldn’t be able to take it for three months straight so I kept minimizing it. From three to two months and then two to trying to take it only every other month.

It got to the point though where my birth control literally would turn me into this over-reactive creature. I’d snap at the dumbest shite or the smallest annoyance. My patience level really didn’t even exist anymore. And I felt so worn down every day I was on it and some days I’d feel dead inside.

Then last month, my body straight up rejected my birth control. I felt so nauseated an hour after I took it. Despite trying to fight the nausea, I threw up the pill. After recouping, I had imagined this mini version of me inside the control panel of my body pretty much yelling obscenities at me and telling the birth control to feic off.

[This paragraph is for new readers] I had been on birth control for so long because I’m fighting a constant battle with endometriosis (stage 4) which is when cysts/tumors grow within me every month. The menstrual cycle feeds into these cysts/tumors and inflammation increases the most during the cycle and for many women suffering, the range of pain can vary but most of the time it’s horribly, debilitating pain.

When the majority of the health industry says there’s no cure and all they supply are band-aid solutions such as birth control, crazy menopause-like inducing injections and and surgery (or “get pregnant” which for many is already an issue and people don’t like to get told to fk’n get pregnant! Especially if they had been trying for ages and/or is no longer an option or they don’t want children! *exhale* excuse me, had to vent that), you kind of try to go for the least scary thing. I had already been through three surgeries to remove the cysts/tumors that had grown inside me since back then they had grown without anything to really suppress them. I was tired of all that shite and decided the least painful thing to endure was birth control.

After having rejected the pill last month, I let my cycle run its course and it was a very long cycle. It was as if it were making up for lost time. Luckily, this cycle was not so painful. I also did my best to manage my inflammation levels and used organic pads which helped immensely (the old brand of pads I had grown up with sadly contributed to inflammation and other issues because of the shite that were put into them). I also was heavily strict with my food (NOTE: I was not so strict with my food while on birth control since the symptoms were heavily suppressed, so yea, I did eat bad food when I couldn’t afford the good food😅.)

I had researched options and decided to follow a diet chart for IBS sufferers since the symptoms are quite similar to some of the symptoms of endometriosis and both are affected by what is eaten. I copied down all the foods considered low-FODMAP (FODMAP I had then discovered stands for “fermentable oligo-saccharides, di-saccharides, mono-saccharides and polyols.”) My body seemed very happy with this. Between the foods in the list and organic or plant-based meals, my mind and body were functioning happily.

Last week, for two nights in a row, I faltered and got a 4-nugget kids meal at McDs since my husband was craving McDs both times. And oOOooh jeebus, did my body make me suffer. My skin and scalp went nuts with psoriasis flaring and then my insides were inflamed for awhile. That was the slap I needed to go back to strict mode. I’m being strict with needed supplements as well such as vitamin D since it’s been known to help reduce the size of cysts (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209245/).

It’s hard to stay strict buuuut I need to be until I figure out what to do next. I have to find someone who is knowledgeable in the area about endometriosis and possible options. I’ll be setting up an appointment with my physician to see if she knows anyone and can refer me.

Sincerely,
Jenn

Update to all that surgery bill stuff

It turns out that the surgery center had been sending my statements to the incorrect address — for possibly 2 – 3 years? 😑

It was the oldest of the addresses too. The lady in billing said she saw the new address in one part of the system but saw three addresses in the other part of the system. It showed both my old addresses and my present one. It seems like someone on their end may have flubbed by not making my newest address the primary when I had updated them before I moved out of state. Or maybe their system needs a way to completely update all information when something new is added?

I’m still very confused as to why nothing was forwarded by USPS. I’m not sure when the statements were sent out though which may possibly be part of the reason why. I used USPS forwarding each time I moved and forwarding only lasts one year for each move (I think it can be extended but I’m not sure). So maybe after a year, the surgery center still hadn’t gotten the statements ready? And then when they were finally ready, they sent everything to the oldest address and never bothered to update the address for the statements even after I had updated them on the second address as well as my final/present address???

I’m guessing the lawyer was the only one to check my recent location? Not sure if he saw it in the system or did actual research on me.

Good news, they heard me out and worked with me (and thank heavens, she said no legal action was taken so I can pay it off normally). I’ll be paying it all off in monthly payments. And when I get it low enough to fully pay it off, I will.

One would think all is well now, yes?

I think another thing is looming sadly.

I had called UnitedHealthcare and asked if they could send me the EOB of the year I had my surgery. There was the surgery center’s claim which was what I was expecting but also another claim I hadn’t seen before that was on the page behind it. I do not remember getting a statement for it either. It’s from the assistant surgeon that worked alongside the surgeon who owns the surgery center. I don’t think the assistant works under the surgery center because I don’t see his name showing on their site. After further research, I found it under a sort of medical directory at a different hospital.

I’m not sure how to get a hold of him about all this. I’m going to call the surgery center once again but to see if they know how to contact him about this and what I should do. I’m hoping he’ll understand my situation and that had he sent any statements I never received them because he most likely had them sent to the oldest address like the surgery center had. I’m hoping he’ll allow me to pay it off in installments like the surgery center is doing. Because I know no other way of being able to pay off $6000+ instantly.

I must be cursed by the medical care gods.

Wearily but sincerely,
Jenn

One big fat sigh

Good grief. This whole year.

My brain and emotions are exhausted from it. I’ve been trying very hard to balance my mind despite the emotions. But sometimes…I just can’t. Like I just want to melt away and disappear into another realm of existence where chaos, fear and stress are nonexistent.

I thought not writing in here was a good thing really. It meant I was able to deal with what was going on without pouring my heart out into the endless sea of the world wide web. Buuuut, I keep forgetting how writing it all out helps me from mentally drowning.

I was blessed to receive financial assistance for the outstanding bills that the ER (previous post stuff) had sent me. I’m thankful for that. Extremely thankful. But it seems the medical community isn’t done with me yet. Today (after 3 years), the place that had done my endometriosis laparoscopy/surgery decided out of nowhere to send me a letter claiming I had 10 days to pay an outstanding bill of $5000+. I was shocked because #1 I had contacted them multiple times in 2017 [before I had moved] to check and make sure there were NO MORE BILLS. But now suddenly there had been a bill! The letter claimed that multiple statements had been sent to me but I hadn’t seen one. This was the first letter I had ever seen from them since I had moved.

This afternoon, I had emailed the attorney that works there (and who had sent me this letter) explaining that I had never received any statements. That USPS would’ve sent me the forwarded letters or at least I would’ve seen SOMETHING in their daily emails that show me what is even in the mail for me. I also explained I had called multiple times before I moved to see what left was owed only to be told there was nothing owed. Funny part is, one of the ladies within billing said that I wouldn’t need to worry about them tracking me down for what she had said at the time was $500. How did $500 turn into $5000+?! And sadly enough, they apparently did hunt me down? I just never received anything? until now, I guess…

Another thing I did before moving was I had called one of the office locations and told them my new address. So why didn’t I receive anything until now? I did notice that one of the surgery profiles had the updated address but not the other, so does that mean they had been sending it to an old address and then suddenly realized “Oh hey, here’s another address. Let’s try this.” But it still doesn’t explain why it never showed up within my USPS notifications or forwarded mail.

I try to do everything right… but something always happens to send me into a whirlwind.

*sigh*

In the email, I also told him I no longer have a job that can allow me to pay this amount so suddenly. I asked if there are any payment plans or something I can do. I don’t know if he’ll even read the email. This Monday, I plan on calling both the surgery center and him to get to the root of it all.

Of all the things to get before Christmas, huh?

Sincerely, Jenn