Urinary Incontinence and Fibromyalgia

I struggle with urinary incontinence. There I said it. That’s a phrase that is not on the top of any woman’s (or man’s) list of things they want to say out loud (or type for the world to see). Yet, for too many of us with Fibromyalgia, urinary incontinence is just another of our struggles. Add in endometriosis and the struggle becomes even more real.

In fact, a study published in December of 2015 (Jones et al.) found that women with Fibromyalgia were much more likely to report bladder issues and pelvic pain than other women of the same age.

Some 93% of 200+ women surveyed said that they experience pelvic / bladder pain and issues at least some of the time. Unfortunately, the study didn’t break it down into actual incontinence vs pain. However, another study from 2014 (Fan et al.) found that there wasn’t a higher rate of Fibromyalgia reported among women with hypersensitive bladder.

I’ve been dealing with this for years with no answer. When I started seeing the pelvic pain specialist about three years ago this was one of the topics we addressed. His first line of treatment is a form of physical therapy. I tried it.

Then there are medications. I’ve tried three so far. Once you fail (such a lousy way of saying it) two medications they move on to more invasive options.

There are three invasive options that I talked with my gynocologist (pelvic pain specialist) about, but only one that they perform in their office. The three options are botox, sacral neuromodulation, and PTNS.

Botox involves injecting botox into the bladder and needs to be repeated every 6-9 months. My gynocologist doesn’t offer this but could refer me to a urologist that does it.

Studies indicate that the success rate for this treatment is very high. Some 90% of patients see at least a 50% improvement, with about the same % reporting that their incontinence episodes were completely stopped.

The downside is that another study has found that about 20% of patients who undergo Botox injections for urinary incontinence need to be catheterized because they are unable to urinate. The crazy part is that 40% of those who had to be catheterized still underwent a second shot. I guess for some folks it’s better to be catheterized than to be incontinent.

Sacral neuromodulation involves the implantation of an device at the sacrum that sends electric pulses to the nerves connected to the bladder. This treatment has been used successfully for both urinary and fecal incontinence, and has been approved by the FDA for about 15 years for the treatment of urinary incontinence.

The device is implanted and lasts about five years before it needs a battery change. Typically, before the full device is implanted you undergo a trial implant, which involves carrying around the battery pack for a week, to determine if the device will help you before the permanent device is implanted.

A 2014 study by Peters et al. found that about 70% of those who underwent sacral neuromodulation implantation saw a  greater than 50% improvement in their symptoms of urge incontinence and frequency.

The third option, PTNS, is not typically covered by insurance (unless you are on Medicare). PTNS stands for Percutaneous Tibial Nerve Stimulation and it works similarly to the Sacral Neuromodulation. However, instead of having a device implanted to stimulate the nerves, you return weekly and the nerves are stimulated via a lead at your ankle.

The sessions last about 30 minutes and have to be repeated weekly for about 12 weeks. You then continue to have occasional treatments as needed. Studies have found that the positive results for PTNS are about the same as for Sacral Neuromodulation (about 54% report moderate to marked improvement in symptoms).

Of the three options my doctor only performs Sacral Neuromodulation, but can refer me for Botox. However, after reading the literature I think that’s the best option. I like the idea that they test it out before implanting something.

I was leaning towards trying Botox first, before I researched it further, but the idea that 20% of people have such strong results that they actually can’t urinate at all and need to be catheterized. Um. Nope. 

Have you had a sacral neuromodulation implant or Botox for urinary incontinence? If so, please comment below and let us know how it went for you.

Update October 2020: I didn’t have the Sacral Neuromodulation (or either of the other treatments). My bladder symptoms have decreased greatly. I believe it’s the result of two things. First, is Oska Pulse. There’s a good number of studies backing up the use of PEMF for urinary incontinence. Second, was a third surgery for endometriosis. Following that surgery (which removed more endometrial tissue from my bladder), the urinary incontinence pretty much disappeared for a while. As time has passed (about 3 years now) since that last surgery, the symptoms have returned, usually shortly before my period or when I’m constipated.

I’m really happy about this update because I really wasn’t looking forward to any of these options. Oska has helped me in so many ways. If you’d like to give Oska Pulse a try, you can save $55 when purchase via the links in this post.

Related Posts:

• Got Urinary Incontinence? Get PEMF
• Fibromyalgia, Pelvic Pain and Pelvic Floor Physical Therapy (Guest Post)
• Pelvic Floor Dysfunction and Fibromyalgia (Guest Blog)
• Dr. Oz on Fibromyalgia and Chronic Pelvic Pain
• Fibromyalgia and sexual dysfunction

References:

Fan, Y., Lin, A. T., Lu, S., Chuang, Y., & Chen, K. (2014). Non-bladder conditions in female Taiwanese patients with interstitial cystitis/hypersensitive bladder syndrome. International Journal Of Urology, 21(8), 805-809. doi:10.1111/iju.12456

Jones, K. D., Maxwell, C., Mist, S. D., King, V., Denman, M. A., & Gregory, W. T. (2015). Original Article: Pelvic Floor and Urinary Distress in Women with Fibromyalgia. Pain Management Nursing, 16834-840. doi:10.1016/j.pmn.2015.06.001

Peeters, K., Sahai, A., De Ridder, D., & Van Der Aa, F. (2014). Long-term follow-up of sacral neuromodulation for lower urinary tract dysfunction. BJU International, 113(5), 789-794. doi:10.1111/bju.12571

Staskin, D. R., Peters, K. M., MacDiarmid, S., Shore, N., & de Groat, W. C. (2012). Percutaneous Tibial Nerve Stimulation: A Clinically and Cost Effective Addition to the Overactive Bladder Algorithm of Care. Current Urology Reports, 13(5), 327–334. http://doi.org/10.1007/s11934-012-0274-9

http://www.webmd.com/urinary-incontinence-oab/news/20150515/botox-overactive-bladder