Interstitial Cystitis (IC), Pelvic Pain Support Forum Community
64 Members
Avatar universal

Anyone With A Similar Experience?

I was diagnosed with I C in the early 1990s and did not have Hunner's ulcers at the time. I knew very little about I C, however, in 1999 I met a 78 yr-old woman whom was ‘frozen’ in a chair from her pain due to the uncontrollable pain of I C. The quality of her Life was literally zero.
Realizing that could be me one day, I became very proactive regarding the condition and began altering my lifestyle in every area that I could to control the negative effects of the condition.  The only remaining addition to my diet because of the I C was one drug that I had taken since 1993 to help control the pain. In 2003, I made a personal decision to become totally drug free, stopped the one drug that I had taken since 1993 and maintained a low level of pain for 6 years through only diet and lifestyle.
Through much research, trial/error and a lot of hard work, I felt that I truly had mastered the condition. However, in 2009, I was infected with genital herpes and the condition began reverting back to its ‘normal’ behavior of chronic 24/7 pain. Month after month, year after year - my pain began increasing on a consistent basis and this year it has become intolerable. I chose to put the increasing pain ‘aside’ to assist with personal family matters and run a business, getting back to it when I could. Well, ‘could’ is here because ‘have to’ came first.
Two weeks ago I revisited my Urologist, explaining that the pain is now so great that I am being worn down - not a place I want to be, especially at approaching the ‘young’ age of 65, looking forward to my Golden Years. During the initial exploratory, my Urologist found 1 Hunter’s ulcer and determined that I might benefit from laser surgery.  This week he went in to remove one Hunner’s ulcer, yet, found four more that he also removed.  We are presently awaiting the biopsy report to determine how to move forward.
I am not any type of licensed physician nor do I claim to be, however, not just ‘dealing with’ but ‘working’ the condition for over 20+ years, I know first-hand the level of wellness that I was capable of achieving – not only ‘knew it’, but had achieved it. It is my personal opinion that the introduction of the genital herpes into a system that was already compromised has created the havoc that exists today.
At this juncture, I have had 4 years to get over the distress of the contraction of herpes (I was blind-sighted by a 30-yr friend); however, I do not know (if the laser surgery does not work) that being able to continue to work is going to be possible with the additional I C pain - that I believe is being daily exasperated by now carrying the herpes virus.
Any knowledge, information, inspiration – ‘whateva ya’ got’ - will be welcomed. Thank you and God bless.
0 Responses
You must join this user group in order to participate in this discussion.
Didn't find the answer you were looking for?
Ask a question
Popular Resources
For people with Obsessive-Compulsive Disorder (OCD), the COVID-19 pandemic can be particularly challenging.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.