Friday, January 6, 2017

Facing Forward: "Broken"

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name:  I blog under "Broken"
Location:  I live in central Missouri, USA
Diagnoses: Hypertonic Pelvic Floor Dysfunction (I have no voluntary relaxation of muscles below the waste on my left side just under the ribs to just above my knee); Permanent Structural Damage to my Bladder (I can’t void without a catheter)
Age at Diagnosis: Hypertonic Pelvic Floor Dysfunction at 43; Permanent Structural Damage to my Bladder at 46

How are you currently treating your condition?
My Hypertonic Pelvic Floor Dysfunction is treated by internal vaginal physical therapy, biometric Estim physical therapy, trigger point injections into the Levator Ani, and pain medication. I spend a lot of time sitting on a heating pad because my butt always hurts or I take a really hot bath (my husband will boil water to add to the tub so it’s hot enough to release the tension.

The permanent structural damage to my bladder is from a neurological condition and not musculoskeletal and not associated with the pelvic floor dysfunction. I have urodynamic testing and cystoscopy. I have a 3 MRIs scheduled and the results of those tests will tell me what neurological disorder caused the structural damage and will allow the doctors to “see” the best place to insert an InterStem device which is basically a pacemaker for my bladder.

I was also diagnosed with arthritis at 13. As a child it affected my knees. As an adult it’s my hands. In the mornings I can’t even squeeze my toothpaste on my toothbrush or pour my own coffee. I’m good to go about an hour after I take my Celebrex for the rest of the day and has very little impact on my life; or I have so many other problems it’s not something I notice. I do drop things quite frequently, but I think that has more to do with left side muscle weakness than my arthritis.
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge I have faced since my pelvic floor dysfunction was diagnosed has greatly affected my sex life as my physicians would prefer if I don’t participate in any type of penetrative activities. My spouse and I had a very active and healthy sexual relationship prior to this. It has been nearly 6 months since we’ve been able to engage in traditional sexual conduct. Coming up with ways to maintain that physical closeness so that both parties are comfortable, secure, and satisfied has been extremely challenging. 

The diagnosis on my bladder came totally out of left field. I was able to pee, then one day I couldn’t. I was expecting a simple diagnoses, like maybe I had a kidney stone stuck in my urethra. Something with an easy fix. Leaving the doctor’s office with catheters for use on an as needed basis rocked my world. I’ve had to learn how to use a catheter, which isn’t easy. It gets a little easier every time, but I haven’t quite managed to use one without making a mess. I’m now on an every 6 hour schedule. I’m hoping to be able to get the implant which will allow me to void my bladder organically because the InterStem will send electronic stimulation that will tell my brain it’s time to go; right now the condition has worsened to the point I can’t tell myself when my bladder needs to be emptied, hence the schedule.

What are your favorite tips and tricks for managing everyday tasks?
Managing hypertonic pelvic floor dysfunction is an ever changing condition. Some days my muscles are so weak, I need assistance getting out of bed and down our stairs and my pain level is through the roof. On those days I do only what’s necessary and possible. Other days, my pain level is low and I can manage to most tasks on my own. I have to avoid things like squatting and heavy lifting and being on my legs for long periods of time. Doing anything that will strain those muscles cause spasms that are painful. I have more good days than bad days on that score because I’ve started listening to my body and paying better attention to what It’s telling me. Occasionally the inguinal ligament will get jammed between my hip joint and socket and on those days I need the use of a walking aid until the pelvic floor relaxes enough to release it.

For the structural damage to my bladder, I have to set a timer to make sure I don’t miss a scheduled catheter time. The more the bladder fills and the longer it remains full causes further damage.

How do you manage to keep facing forward every day?
I have a great mental health care provider. I don’t like having to use a catheter in a public restroom and started suffering social anxiety and panic attacks. With the help of an anti depressant and some anti anxiety meds, I do pretty well mentally. I know eventually my pelvic floor muscles can be retrained to function properly. I still have plenty of room for improvement. I just have to maintain my therapy sessions and trigger point injection appointments. The doctors are looking for an answer on the structural bladder damage. They have indicated to me the level of and suddenness of the permanent structural damage to my bladder is typically seen with advance cases of patients with MS. So knowing there is an answer out there and I’m not being neglected by the medical care providers leaves me with a feeling of confidence I am in good hands.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
My hypertonic pelvic floor dysfunction was misdiagnosed as sciatic nerve disorder for over 18 months. I would tell my past self to make sure the specialist examining me wasn’t embarrassed by a question relating to sex. When I asked my orthopedist if penetration is normally painful with someone who has a pinched nerve and he stammered and blushed, I should have immediately requested a second opinion. I would also tell my past self that emptying your bladder once every 12 hours is not normal and mention it to my physician earlier before the damage became permanent.

Do you have a blog you would like to share?
My blog address is I’ve also written an article for #ThatsNotAVagina which you can read here.

Would you like to be featured on Facing Forward? If so, please send an email to  

No comments: