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.

12 thoughts on “Being a Human guinea pig

  1. I was a guinea pog once for exactly the same reason. I wasn’t paid but the drug was paid for me, which I thought fair enough. It was an experimental drug at the time, and I was the only one who relapsed in our group, which left me wondering if I was the placebo patient.

    Liked by 1 person

  2. I’m sorry you’ve had to go through all of this with your bladder. I experience something similar since nerve damage, with the whole desperate need to go and feeling like that all the time, some leaking, other times sitting there for an hour feeling like I’m bursting but without being able to go at all.

    I think in cases where it feels like a dead end, where there aren’t typical, tried and tested treatments and options, then trials can be useful. Risky perhaps, but useful. As you say, you felt desperate and perhaps that’s where these are most often taken up by people, when they’re in dire straights and are willing to take the gamble.

    It’s interesting just how many things botox can be used for beyond giving you that frozen-faced appearance. It sounds like you were trying quite a few things over the years with better results a times, but then the last year it’s gone to tits again.

    Wow wow wow about the implanted device! I’m still very weary of implants (I’ve got an implant of something that-shall-not-be-named and it’s been hell, so it’s put me off somewhat). However, science is doing some amazing things and it must have been such a shock and maybe relief mixed with fear when you got the call of approval to set you up for surgery!

    I want the next post. I’m not good with patience these days 😂

    Caz xxxx

    Liked by 1 person

    1. TBH with you the jury is still out and I have alot to learn about this thing. I’ve got it now though, so I am trying to learn everything I can. Unfortunately, my next post wont provide any answers about the results though. I made my first 2 weeks hell. I’m happy to talk to you about it anytime you want though

      Liked by 2 people

  3. My goodness, Grace, I’m sorry to hear that you’ve been through such a trial with your bladder. I sincerely hope your Interstim device will give you the results you’re hoping for. I think it’s to your benefit that you don’t automatically take ‘no’ for an answer or simply believe that ‘nothing can be done.’ If everyone thought that nothing could be done, nobody would ever come up with these amazing inventions that can make our lives better. I look forward to reading how you’re getting on with your implant. Take good care of yourself sweet friend!

    Liked by 2 people

  4. Ugh! So much of this sounds all too familiar to me. Multiple urologists? Check! Botox? Check! Catheters? Check. (And resulting UTIs.) Anti Chlorinergic Drugs? Check. By the way, there is a high correlation between use of those drugs and dementia. But what does a urologist care? They solved the problem you present. (Not.) I am very grateful to you for sharing updates. I have bought myself a zapper and am now thinking of just zapping along the tibial nerve without the bother of office visits. (Lab Rats are even more reckless than guinea pigs.) What could go wrong? Ha. Ha. Hah! At least I deprive the medial industrial complex of profiting, just this once, on an ineffectual cure.
    That said, BEST OF LUCK TO YOU! I want this to work for you SO BADLY that I’m typing in all caps like an idiot. Keep us updated.

    Liked by 1 person

      1. You mean, how I went to China with a problematic bladder? I have yet to write about that. I’ll do it soon. Not. I start teaching one remote class for The Art Academy tomorrow and that is a full time job for me. Honestly China is very friendly to the old and infirm, more so than the US. I never lacked access to a clean bathroom… some had squat toilets, some had thrones, one had a throne with massage settings! You are expected to BYOTP. ..wait I’m writing another Ms. Lab Rat post. All I meant to say was, I’m thinking of you too, kid.

        Liked by 1 person

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