Being a Human guinea pig

A quick search of Google defines A Human Guinea pig as “something you experiment on. When someone calls himself a human guinea pig, he means he tested a theory or method on himself.” When someone allows themselves to be a human guinea pig in the medical community, they allow doctors and/other so called experts to experiment on them.

Why would anyone allow themselves to be a experimented on?

While I can not speak for others, I can tell you the reason I DID was out of desperation. I have never been good at taking no for an answer, or hearing there is nothing else that can be done. When I was in my mid thirties I had reached my breaking point regarding urinary incontinence, urgency, and retention.

A little bit of history

My bladder issues began when I was around 28 years old. I would have the urge to urinate so strongly that I would leak, yet I would end up sitting on the toilet unable to void even a drop of urine on my own. After trying for several minutes, I would stand up, begin to redress myself only to start leaking again. These leaks were not small drops. Next came wetting the bed. (Ironically this occurred at the same time I was potty training my daughter) grrrr

Time to see a urologist

The doctor came in to the room, literally shrugged his shoulders and muttered, “You have MS, and you’ve had a hysterectomy, what do you expect?” He said, “there is nothing that can be done”, and left the room. I was shocked and outraged.

Urologist Number 2

After “licking my wounds”, I made an appointment with another urologist who I immediately lied to. I purposefully omitted the fact that I had a hysterectomy and MS when filling out my patient forms. After the doctor performed a post-void residual, (a test that measures the amount of urine left in the bladder after urination with an ultrasound.) and they questioned why I had no uterus, I was “busted”. The tears that I had been holding back for months rushed from my eyes as I began to choke out my apology and an attempted explanation for my omissions. Thankfully he was very understanding of my desperation. He sent me to an office at the hospital to learn how to self cath.

I have been doing this ever since. I have tried every Anticholinergic on the market with limited success from each. I’ve have had urodynamics testing performed numerous times. I have gone through bladder retraining and pelvic floor therapy. I have restricted my fluid intake to the point of dehydration. All of these things “helped a little” but not enough, and not for long. Finally, urologist number 2 referred me to a specialist at Loyola University Medical Center in Chicago.

Introduction to being a guinea pig

After meeting with this specialist and undergoing urodynamics testing again, she informed me that I had exhausted all forms of approved treatment for my conditions. Fortunately though, the hospital was currently seeking patients to enroll in the study of Botox treatments for Urinary Incontinence. I would even be paid to participate in the study if I was interested.

I can, and may at a later date, write an entire post about my experiences while being involved in the study, but at this time I am simply going to state the the treatments were approved.

For the last several years, I have been receiving botox injections in my bladder. During the trial, and for the first year or two afterward, every three months, I would drive an hour and a 1/2 into Chicago to have this performed . The procedure was done in the doctor’s office with the whole thing taking a little over an hour. Here is a link to the drug company if you are interested…. Botox treatments for bladder incontinence.

I was on top of the world! I still had to self cath, but I was rarely leaking anymore and I could go hours in between bathroom breaks!!!!!!!! No more poise pads, wearing depends or constantly feeling that I smelled like urine!!!! Botox worked great for me, until it didn’t.

The doctor at the university told me that most of her patients could go 9 months between treatments, and she refused to do them any more frequently than that. Research from the drug company stated that recommended time between treatments is 6 months although, they could be administered as frequently as 3 months. Feeling “normal” for 3 months and then “regressing” to leaking, pad and depends wearing was not an option for me. So the search for a new doctor began.

It took me more than a year to find a doctor that was willing, and able to perform the injections more frequently, but even he was not comfortable with doing them more frequently than at 6 month intervals. Also, he could not perform the procedure in the office, like I was able to at Loyola. I would have to receive botox at the hospital in an outpatient surgical procedure. If you would like to read my vent about it having to be surgery, please bookmark, “you’re getting botox where?”.

During my initial visit with my current urogynecologist, let’s call him Dr. S. , he informed me about a ‘newer’ treatment that was being used to help manage OAB or overactive bladder called the Interstim by Medtronic. The problem was, the device was not safe for use in MRI’s. (Until recently, I have had to have MRI’s yearly to remain on Tysabri. Now I have to have them every 4 months, but that is another story.) So having the Insterstim implanted was not an option for me BUT….

The same company that developed the Interstim, developed a treatment called PERCUTANEOUS TIBIAL NEUROMODULATION or PTNS. Their website provides this information about the procedure if you are interested.

MEDTRONIC BLADDER CONTROL THERAPY DELIVERED BY THE NURO™ SYSTEM

  • Known by doctors as percutaneous tibial neuromodulation (PTNM)
  • Targets the tibial nerve above the ankle
  • Does not require a programmer
  • In-office therapy
  • Starts with 12 weekly, 30-minute sessions followed by maintenance treatments every three to four weeks
  • Used to treat the symptoms of OAB but not retention
  • Does not cause unpleasant side effects like oral medications can2
  • Ideal for people who can’t tolerate surgery

I’ve also posted this video on my Youtube channel showing how PTNS is performed.

So again for the past several years I have been somewhat successfully able to manage my bladder issues, with a combination of PTNS, frequent self catheterization, and surgery to receive botox injections every 6 months. Some time during the last year though, I have begun waking up soaked almost every night or having to sleep with an indwelling catheter, in spite of having all these treatments.

In October of last year, Dr. S told me that Medtronic had come up with an Interstim device with Surescan MRI SAFE leads and was just waiting to be approved by the FDA. In February, it was still not approved, so I had botox surgery again. Maybe this is the last time?

Each month when I went in for PTNS, I asked Dr. S if the FDA approved the device. Each month he told me, “not yet but they are close.” I would grit my teeth and tell him I would see him in 4 weeks. When I was at my appointment in July, Dr. S surprised me when he came in to the room and announced, “We are going to go ahead and schedule you for surgery next month”. “Seriously?!?! It’s really been approved?!?!?” No, not yet, but they are saying any day now.

Surgery was scheduled for 8 am on August 19th.

I got a call from their office on August 12th, stating that it had finally been approved and surgery would go on as planned. Talk about nerve wracking!

On August 19th, 2020 I had one implanted.

ME and my bag of PEE

I wrote last week that I was going on another “adventure”.  Maybe I shouldn’t have SAID anything?… Somehow MS found out that I am going away and decided that there was no way in hell I would be traveling without it.  GRRRRR

I realize that MS has a place in my life.  I make room and accommodate it’s demands all the time, but just ONCE I would like it to stay in the background a little more.

I should probably get to the actual point of this rant huh?

As I finished packing this morning, I had to pee again FOR THE 4th TIME IN LESS THAN AN HOUR!!!! Seriously?!?!  I just had PTNS last week, and Botox surgery in February for this.  I shouldn’t be having problems again this soon!

Thinking that it is  better to be safe than sorry, I called the doctor’s office.  They agreed that maybe I had a UTI and should come in to rule that out.  (yah for getting me in so quickly)…. Urine test complete, no UTI, but they still want to put me on antibiotics anyway, and suggested I use the Foley catheter for my whole trip. 😦

I am actually ok with having to use the catheter, lord knows I’ve been dealing with incontinence long enough, and who would want to have to pull off the interstate 4 times an hour for a 16 hour road trip?  The thing that stresses me out is having to deal with people’s reactions to seeing someone with a bag of pee strapped to their leg in public.

Well you could cover it up Grace?

Why?  So other people are more comfortable?  Not a chance!  The weather in Texas and Las Vegas is supposed to be in the 100’s, no chance in hell I am going to wear pants.  I have already given up half of my suitcase for incontinence supplies, medications, and such.  The only way I have half a chance in hell of surviving the heat is wearing shorts and tshirts or tank tops.  I had hoped to stay in/or by the pool while in Vegas, and I realize if I can’t get these symptoms to calm down I MIGHT have to give that idea up though :(… we shall see….

I’ve got this!…The only thing left is to come up with a name for my “companion”….Any suggestions?

 

 

You’re getting Botox Where?!?!?!

IN MY BLADDER

Who? What?  WHERE?!?!?…..     In your bladder?!?!? 

(Jokes about a bad connection or needing glasses)

Seriously though,  in my bladder (although some other areas could maybe use it to)

I have neurogenic bladder which is described as:

Neurogenic bladder is bladder dysfunction (flaccid or spastic) caused by neurologic damage. Symptoms can include overflow incontinence, frequency, urgency, urge incontinence, and retention. Risk of serious complications (eg, recurrent infection, vesicoureteral reflux, autonomic dysreflexia) is high.

FOR ME, personally, this means when I have to go I have to go.  Get the hell out of my way it is coming NOW!!!  Most times I can tell that I have to urinate before it happens, but not always, and just because my brain sometimes gets the message that I have to pee, it doesn’t mean it lets me know that I have to go more than 10 seconds before it starts to flow…… smh… yeah yeah “it sucks to be me” I know.

Just to keep it interesting though, my body seems to have forgotten HOW to pee.  So my brain gets the message (most times) “Hey you should probably RUN”, and I attempt to move as quickly as possible toward the nearest “facility”.  I get there, and then NOTHING!  Not even a drop sometimes!….ARE YOU FRICKING KIDDING ME?!?!?   How do you live with that?

Learning how to Self-catheterize

For starters, I self- cath.  I have included this link not only to show a “carton image” of how the whole thing is done, but because it cracks me up that even a medical site doesn’t really “get it”.  One hand to spread your labia, your second hand to insert the catheter, and your THIRD hand to hold a mirror?!?!?…lol yeah good luck with that.  Either way I have figured it out, and it helps.

I try to pee on a “schedule”, and before I leave the house, or before I have sex, or go to the store and and and.  I’ve also learned which drinks aggravate my urgency (surprisingly water is worse than coffee) but more on this at another time.

Percutaneous Tibial Nerve Stimuation (PTNS)

I’m not even going to try to explain how this works, but it does help with the urgency.  Here is a link that does explain the science behind it, if you are interested.  I’ve also copied a portion of the site here:

Percutaneous Tibial Nerve Stimuation (PTNS) is a low-risk, non-surgical treatment. PTNS works by indirectly providing electrical stimulation to the nerves responsible for bladder and pelvic floor function. During PTNS treatment, the patient’s foot is comfortably elevated and supported. Also during treatment, a slim needle electrode is placed near the nerve at the ankle known as the tibial nerve. A device known as the Urgent PC Stimulator is connected to the electrode and sends mild electrical pulses to the tibial nerve. These impulses travel to the sacral nerve plexus, the group of nerves at the base of the spine responsible for bladder function. 

By stimulating these nerves through gentle electrical impulses (called neuromodulation), bladder activity can be changed. Because this change happens gradually, patients receive a series of 12-weekly, 30-minute treatments. After the 12 treatments, when the patient’s response to therapy is assessed, occasional treatments may be needed to sustain symptom improvement.

The last time, I went for my “maintenance treatment”, (which is every 4 weeks) the nurse let me take a short video showing how the procedure is done.  I have posted it to my Youtube channel if you want to see.

Botox Injections for Urinary Incontinence

Okay FINALLY to the point of this post.  I am having surgery next week for Botox injections in my bladder. Yes fricking surgery….AGAIN!!!  The Botox website SAYS that the procedure can be done in the office, and it can, but for me it has to be surgery.  😦  I can’t really explain why.  I used to drive to Chicago (2 hours away) to have the procedure done at the University of Chicago, and then drive (albeit uncomfortably) the 2 hours home, but  I had a “falling out” with one of the doctors there about the frequency I felt I needed it and the frequency she was willing to perform the procedure so I have been having it done locally for the last 2 years.

Why does it have to be surgery?

The doctor who performs the procedure locally does not have the equipment or permission or something to do it in his office, so I have to go to the hospital.   To use the operating room at the hospital, they have to call it surgery?  I have to go through the whole sedation game and get a driver because of that.  I have asked them not to sedate me when I go, hell they can even skip the numbing part if they have to, just do it and be done, but that hasn’t worked so far :(.  So next week, I am having surgery, if I can find a ride. ( weather permitting)  What a lousy day!

Surgery will be in the middle of the day.  They will require me to get there with only one cup of coffee in my body.  (They finally agreed to this after dealing with me with NO COFFEE, it wasn’t pretty…. people got hurt ) The check in, vital taking, meeting with the anesthesiologist, (countless nurses), and some doctors too will take approximately 4 hours, and then I will come home and sleep….smh…what a waste of a day.  Oh well, it is what it is, and for me the Botox injections have been the most helpful treatment for my bladder issues.

If you want more information about the procedure ( how it’s done, what bladder conditions that it treats etc) here is their website.  If you have any questions about Botox, or PTNS, self cathing or any other bladder treatments, feel free to send me a message.  Again, I am NOT a doctor, but I have a lot of experience with testing and treatments.  ( I was part of the FDA drug trial for Botox too).  I have lots of bladder stories, including my diagnosis which I will write about later.

If you are having symptoms of bladder urgency or incontinence TALK TO YOUR doctor.  I know it’s not a “fun” topic, but there are many things you can try to not have to suffer in silence.

 

A day of Needles

Today’s day as a “professional patient” consisted of Needles.  Actually not lots of needles, only two, but for me TWO IS TOO MANY!!!!  First Stop this morning was PTNS or Percutaneous Tibial Nerve Stimulation for those of you that like BIG SCARY WORDS.  The purpose?  To help with Bladder Incontinence.  While it does help, it doesn’t FIX IT, at least for me.  Considering the options for Incontinence Treatments, other than taking yet ANOTHER PHARMACEUTICAL DRUG, or having another surgery, this one is not too bad and it is only for one half hour a month with an acupuncture type needle.  I will take it.

Percutaneous Tibial Nerve Stimulation Video

After that was done, I got to visit with the “Vampires” (blood thirsty blood drawers that they are)…. but yah only one stick this time!!!!

They wouldn’t let me take a picture of the blood draw…silly Hipaa laws…. It is still my body isn’t it?   (For anyone reading this that is not from the US, Hipaa is another example of all the ridiculous laws we have in the United States……

All in all not a bad day, and to be honest, I wanted to see how adding a video on wordpress worked.  If anyone clicks on it, can you tell me what you think?  I’m always trying to learn new things.  On that note, Have a great weekend everyone! 🙂