The first surgery was to implant the leads on my bladder and bowl and to basically give me this beautiful tail, isn’t it beautiful, for the next 2 weeks. Giving me these large bandages on my back with wires hanging out of my back, making it to where I can only take a sponge bath until after the last surgery and where they remove the tail, thank god! If you haven’t been able to take an actual shower for 2 weeks you will know what it’s like to jump in the shower the second the 48 hours is up after the last surgery, I was down to the last second and I was heating up that shower, but the tape burned my skin everywhere it touched, so I kinda only waited about 50 hours before getting in a hot tub. The leads always stimulate allowing the bladder more sensation and eventually, hopefully, allowing me to urinate on my own, (crossing my fingers).
I have a disease called interstitial cystitis, I was diagnosed in the fall of 1999 by my Oncologist Urologist and OBGYN. Treatment was rough for the first several years, first I had to go in and have Elmeron injections into my bladder every 2 weeks, I was on 100 5mg Diazepam a month plus pain medication and so much more. This disease has changed my life some for the better a lot for the worst. Interstitial Cystitis is a bladder disease that they are now finding out is a side effect of radiation and Endometriosis the actual definition of Interstitial Cystitis is as follows:
Interstitial cystitis (in-tur-STISH-ul sis-TIE-tis) — also called painful bladder syndrome — is a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain. The pain ranges from mild discomfort to severe. Your bladder is a hollow, muscular organ that stores urine. The bladder expands until it’s full and then signals your brain that it’s time to urinate, communicating through the pelvic nerves. This creates the urge to urinate for most people. With interstitial cystitis, these signals get mixed up — you feel the need to urinate more often and with smaller volumes of urine than most people. Interstitial cystitis most often affects women and can have a long-lasting impact on quality of life. Although there’s no cure, medications and other therapies may offer relief. (https://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/symptoms-causes/syc-20354357)
The signs and symptoms of interstitial cystitis vary from person to person. If you have interstitial cystitis, your symptoms may also vary over time, periodically flaring in response to common triggers, such as menstruation, sitting for a long time, stress, exercise, and sexual activity. Interstitial cystitis signs and symptoms include:
Pain in your pelvis or between the vagina and anus in women
Pain between the scrotum and anus in men (perineum)
Chronic pelvic pain
A persistent, urgent need to urinate
Frequent urination, often of small amounts, throughout the day and night (up to 60 times a day)
Pain or discomfort while the bladder fills and relief after urinating.
Pain during sexual intercourse.
Symptoms severity is different for everyone, and some people may experience symptom-free periods. Although signs and symptoms of interstitial cystitis may resemble those of a chronic urinary tract infection, there’s usually no infection. However, symptoms may worsen if a person with interstitial cystitis gets a urinary tract infection. (https://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/symptoms-causes/syc-20354357)
One of the biggest struggles with IC, for me is intercourse, not to be to blunt it hurts, it can be extremely painful causing infections and the bladder to bleed, this is called a flare-up during these flare-ups the pain and discomfort is at an even 9 on the pain level and trying to calm this pain down takes a lot. I believe the bladder is responsible for my “body-crashes”, because they always coincide with severe bladder infections, causing severe nausea and vomiting, severe body aches, fever, even a high white blood cell count making it extremely difficult to get out of bed or sleep while in bed, it’s a no win situation believe me, and the pain would cripple the toughest man I know.
I try to use RSO for the pain instead of prescription pain meds, however, they are hard to avoid during these times so I have to constantly keep my opioid addiction in check Thank God for my hubby he helps make that part of my journey on track and alive because opioids were stronger than I was, a daily struggle for me that eventually won’t be a second thought.
For now, this little Medtronic device has reduced the number of times that I go to the bathroom, and some of the pain has reduced, however, I am still having to self-catheterize to void the bladder it has reduced, from 17 times a day to 7-10 a day providing I don’t have an infection, I still have to take Macrobid daily to try to avoid infections, it doesn’t always work but it’s a preventative the doctors aren’t comfortable taking me off of at this point, I am however stuck in the middle of the opioid war, and as a patient that’s a tough place to be.
The pain has reduced some and changed some and that’s really hard today as far as chronic pain patients are concerned, we not only have the very real pain from the disease but we also have the very real addiction response to the drugs and for some of us we have been on those drugs for over 2 decades so breaking those addiction responses doesn’t happen overnight, we also can’t completely stay away from the medications because of flare-up’s we all need the support of those medications even if for short periods time and then we’re fighting those cravings again and the cycle starts over, so I’m really hoping to see my pain levels drop a little more as time goes on and I get a little more comfortable with the implant.
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