Trigger Warning: This article discusses a specific person’s experiences with medical trauma. Please be mindful of any feelings this may invoke, and practice self-care if necessary.
Since giving birth to two 9 lb babies, like many women, I’d been seeking a stress incontinence treatment. When I look back at all that has happened since then, it’s difficult to reconcile how a treatment for a simple problem could lead to such devastation. Now that the suffering is behind me I have a new-found appreciation for my own courage. And immense gratitude for the doctor who helped me when all the others said it was impossible.
- The Shocking Truth About My Stress Incontinence Treatment >>>>
- I Never Gave Up >>>>
- The Beginning of my Healing >>>>
- More Than Just Physical Healing >>>>
Though a urethral sling was suggested as a stress incontinence treatment, I sought alternative solutions from my urologist. In 2008, I chose a Coaptite injection, which was administered into the wall of the urethra. The injection contains a biodegradable component that is naturally found within our body and works by ‘bulking up’ the tissues. This tightens the urethra, making it less likely for urine to leak. I was told it would be a temporary fix and results would last 1-2 years. The procedure worked well and it wasn’t until 2018 that I began experiencing stress incontinence again. I went back to the same doctor for a consultation. We discussed doing the exact same treatment and scheduled it for the following month.
I Knew Something Was Wrong
Immediately after the procedure I felt unwell. I was experiencing nausea and abdominal pain. I also had intense stabbing pains around my bladder, urethra and pelvic area. In the days following there was no improvement of these symptoms. I also didn’t get any relief from the symptoms the stress incontinence treatment was intended to provide. Because the doctor didn’t know what else to do, he prescribed anti-nausea meds and an antibiotic.
In the months following, my symptoms continued. I visited my doctor twice. Each time he said he had no idea why I felt this way but continued to prescribe antibiotics. My condition worsened.
In addition to the nausea, pain and pressure, I couldn’t lay flat. I had to sleep sitting up, which meant I wasn’t sleeping. I had an internal stabbing pain, pain when urinating, exhaustion and fevers.
Six months after the stress incontinence treatment, I visited a new urologist who heads up the urology department at Hackensack University Medical Center. I underwent tests, a cystoscopy and an MRI. She could see where the injections were placed and felt some of the bulking agent was placed too high in the bladder, not just in the urethra. I was informed that the product couldn’t be removed. In addition to living with the pain, I was now experiencing recurrent UTIs. Sometimes the urine culture would show up with infection and sometimes just blood, no infection. I was told I would have to be on antibiotics and bladder pain medication for the rest of my life in order to manage the recurrent UTIs.
The Shocking Truth About My Stress Incontinence Treatment
Desperate for answers, I requested my medical records from the original doctor I consulted about my stress incontinence treatment in 2008 and 2018. What I learned was shocking. He had used different products for the 2018 procedure than the one we discussed. Rather than Coaptite like the original treatment, he had used Macroplastique and Botox.
After learning this, I did some research and found out that although Macroplastique is a bulking agent, it is made in a silicone base. This is different from Coaptite which is made in a calcium hydroxylapatite base, a mineral that naturally exists within our bones.
Being sensitive or allergic to so many products and foods, I thoroughly investigate anything I use or put in my body, so would never have agreed to this. Taking to the internet, I found a few forums where women complained of the same symptoms.
I went back to my new urologist with both worsening and new symptoms — some appeared to be side effects from the antibiotics. She recommended pelvic floor physiotherapy. I went to six sessions and endured manual therapy involving hands-on pressure and massage externally and internally. The pain worsened after each session. If only pelvic floor physiotherapy was suggested as a stress incontinence treatment in the very beginning, I may never have found myself in this situation.
I continued to visit the urologist that year, each time she grew more frustrated, rude and dismissive.
Then, COVID-19 hit and I put a stop to the disheartening visits. Still in excruciating pain that only seemed to worsen with time, I refused to accept that I would “just have to live with this.” I visited a third urologist only to be told again that the Macroplastique from the stress incontinence treatment could not be removed.
Adjusting to my New Normal
I tried to adjust to my new normal of feeling awful. Every aspect of my life was affected. My marriage was adversely affected and I withdrew from relationships with friends and family. As a personal trainer and fitness instructor, it was almost impossible to find the energy to put on a smile and do my job.
Though the challenge was immense, I kept working to maintain a sense of normalcy. I teach indoor cycling and was forced to drop all but one of my classes. Afterwards, I’d lay on the sofa the rest of the day, exhausted and in pain. My mental health suffered and I fell into a depression trying to wrap my head around living like this FOREVER. Therapy helped me to learn coping tools to deal with the pain and frustration.
I was angry with myself for choosing this stress incontinence treatment, and so embarrassed I barely told a soul.
Meditation helped my body and mind relax. Acupuncture provided mild and temporary relief with both the mental and physical aspects. I continued taking antibiotics despite side effects and the belief that they were destroying my gut health. When the side effects were unbearable, or the antibiotics failed to clear an infection, I was prescribed a different type.
I came to suspect that the doctors prescribing my medication were unfamiliar with the side effects. My doctors were dismissive when I made enquiries so I turned to my local pharmacy for guidance. If my pharmacist was unable to answer my questions, they would conduct research to gather the information needed.
Excruciating Pain and a Severe UTI
Around four years after the stress incontinence treatment, during intercourse — which was infrequent due to the pain — it felt like I was being sliced on the inside. The pain was excruciating and I became unwell with a severe UTI and fever. A month later, I went to my gynecologist for my yearly check up and almost jumped off the table during the exam. She said the pain was coming from my bladder and referred me to yet another urologist who did a cystoscopy. He could see blood and the inside of my bladder was raw. Again, I was told that the Macroplastique couldn’t be removed and I had to keep taking antibiotics. At this point I had been told by four urologists that the Macroplastique was permanent and nothing could be done to reverse the procedure.
I Never Gave Up
During this whole time, I continued searching for resources online. Somehow, it gave me a feeling of some control. I was seeking my own solutions and it helped me to retain hope. In my various Google searches for stress incontinence treatment, Macroplastique/complications/pain, I eventually found a presentation by Dr. Philippe Zimmern about Macroplastique erosion, granulomas and removal.
Dr. Zimmern is located in Dallas, Texas and I’m in New Jersey, so I reached out to his office and explained the stress incontinence treatment and my current situation. From the moment Dr. Zimmern came on the tele-med call, his demeanor was completely different from any other doctor I’d met.
I was reassured that what I was feeling was not normal and that, contrary to what I’d been told for years, it was possible to remove the Macroplastique.
He also told me that there wasn’t any reason for the first doctor to use Botox for my situation. For the first time in four years, I had hope for my recovery.
I scheduled an appointment to see Dr. Zimmern in Dallas in April 2022 for an in-office cystoscopy followed by surgery at the hospital the next day. During the cystoscopy he did something no other doctor had done. He retroflexed the camera, turning it so he could see in all directions.
I couldn’t believe what I saw on the screen — numerous protruding pieces of the Macroplastique with calcifications, like sharp stones, and blood.
Dr. Zimmern was surprised by how much Macroplastique had been injected and also where it was placed. He said that, given the situation, I was fortunate I hadn’t developed sepsis.
The Beginning of my Healing
To remove the Macroplastique, I learned that a fulguration would be necessary. During the three hour surgery, Dr. Zimmern used a laser to burn off the calcifications and remove the protruding Macroplastique. Afterwards, he said he had removed as much as he could but we wouldn’t know until six months post-op if the area would heal appropriately. He sent me home with a 60-day course of antibiotics.
Afterwards, some of the pain subsided but I still wasn’t feeling great. I flew out to Dallas three months post-op and Dr. Zimmern discovered another area of Macroplastique which was newly exposed. At my six month appointment, he confirmed I would need another fulguration surgery. In January 2023 during my second fulguration surgery, Dr. Zimmern discovered even more areas of Macroplastique in the bladder that had protruded, as well as one in the lower part of the urethra. The post-op pain and recovery was the worst so far. But once the recovery time was over, I was pain-free for the first time since the stress incontinence treatment, almost five years!
In April 2023, at my three month post-op appointment Dr. Zimmern said I was 99% healed! There was just one small area where the tissue had not yet healed over and we would assess this at the six month post-op appointment. My additional follow up appointments showed that I healed well.
I am now feeling good and have gotten my life back! There have been no infections and no pain. I’ve been free to reconnect with friends and family and am back to enjoying my work again.
More Than Just Physical Healing
As my next follow up date gets closer, it triggers some PTSD issues. At my last appointment, Dr. Zimmern and I agreed that if I didn’t have any pain or infections, we could skip the follow up scope. Part of me wants to remain positive and move forward but every time I get a weird sensation or a twinge of pain, I panic. I wonder if having the scope will put me at ease.
Though the physical pain and suffering is behind me, I’m still working through the emotional scars this experience brought. Recounting my story here has also brought up the anger I have towards the doctor responsible for my suffering.
I’m frustrated at not having any legal recourse. The waiver I signed absolved him of fault, even though the stress incontinence treatment he conducted did not reflect what we had discussed during my consultations prior. I have researched eye movement desensitization and reprocessing (EMDR) — a therapy that aims to reduce distressing emotions associated with traumatic memories. For now, I’m concentrating on giving myself some grace.
I can’t express how grateful I am to Dr. Zimmern. Besides being an expert in his field as a urologist, professor and researcher, he is also the kindest, most compassionate person and doctor. Genuinely caring, it shows in everything he does. He gave me my life back and I will be forever grateful to him. I only wish I had consulted him for my initial stress incontinence treatment.
As a very private person, I only shared my condition, and the stress incontinence treatment that robbed me of my quality of life, with a select few. Despite this, I promised Dr. Zimmern I would share my story so others know help is available. For anybody in a challenging situation like mine, I urge you to not give up. Just because experts tell you your situation is impossible, doesn’t mean it’s true. Their advice is based on their knowledge and experience only. There is always someone who might know more. Keep searching until you find them.
If you would like more information about specialists in your area, please reach out to us. Leave a comment below if you’d like to share your experience with others.