Yesterday I received an e-mail from a young woman that raised concerns. I would like to share it with all of you because if you are reading this blog, chances are you were where she is now… waiting for answers. It is not easy experiencing your body going south when your spirit continues to want to live life to the fullest. Waiting is hard until we have come to grips with our new normal and decide that life is too short to spend too much time worrying about why. I have found that being in competent medical care is very comforting. There are enough quack jobs out there, but once you have a doctor that is on your side; the why is not as important as to learning to cope and feeling comfortable in one’s skin.
So here is the letter…
I came across your blog site today and after reading several posts found me moved by your honesty and moral character. (I applaud your stance on the use of stem cells.) I also suffer from neurogenic bladder and find myself perusing the internet (probably too often) in search of answers to why this is happening to me. I am only 29 years old. My symptoms began over a year ago and include a combination of spastic bladder/frequency, urinary retention and nocturia. I've been to many doctors over the last year and as of October am finally getting medical care that matters (my first urologist diagnosed me with chronic UTI, sent me away with 90 pills of Bactrim, and told me I had to find a way to medicate and cope with the symptoms myself). Now that I have new, wonderful doctors, I recently had three MRIs: brain, spine and thoracic, the results of which I will find out tomorrow.
On the eve of my MRI results, your blog could not have come at a better time.
In reading your posts, I now understand that my condition may not be tracked to a specific disease or disorder right away as some of your followers and yourself seem to be struggling without answers for quite some time. While this realization is somewhat disheartening, I feel that as a result of reading your story and those of some of your followers, I am better prepared for what my neurologist may or may not say tomorrow. I feel prepared to continue to wait and see, should I have to do so and feel supported knowing there are other people out there in the same position I am in.
While reading your auto immune disease post, you state that you may have MS. I was wondering if you've received a diagnosis for this or what course of action your doctors are taking to rule in/out this possibility. If it is not MS causing your symptoms, do your doctors have other conditions/diseases they think may be the cause? I ask because I've typically seen neurogenic bladder related to MS (when spinal cord injury is not a factor) but have been told by doctors that they suspect this is not the case for me. If MS is not the cause, I am wondering what else may be (I've been tested for Lyme and B12 deficiency, both negative).
I was also wondering if you've tried pelvic floor physical therapy? I've received pelvic floor physical therapy for my condition since October and find that the manual, internal therapy works best to keep my muscles loose and less spastic (I also get massage and electrical stimulation at PT). I currently to go to therapy once a week. As I am still going to therapy, need to continue going to therapy, and have no idea when I'll be able to stop going to therapy, I am wondering if you have experience with pelvic floor therapy, what your experience is/was like and how long its lasted. I don't know anyone else with this condition so I hope you don't mind my asking these questions. I'm just curious to know what the "norm" has been for others…maybe for some glimmers of hope that this will not be the state of my life for the rest of my life!
I want to express thanks and gratitude to you for writing your blog and creating a community where people suffering from this frustrating condition can go for information and, thankfully, some humor. You bring light and laughter to this often dark and secretive condition.
I will continue to read your old posts and look forward to the new ones. I hope to hear back from you soon.
Marilyn brings up some interesting topics I would like to discuss; I have never tried pelvic floor therapy, other than a Jane Fonda type workout. If the result is to have a pelvic floor that looks like Jane Fonda’s then I have missed the mark. I have tried kegal exercises. They were introduced to me during my pregnancies. I am not versed in how they help; you will need to consult your urologist on that one. My ending thought in all of that is after a fair amount of time with any treatment, it seems reasonable to move on. I made that conclusion with my uroplasty. I gave it six tries with no result. It was worth a try.
The cause of my neurogenic bladder and bowel is not known. I see a neurologist on a regular basis as well as an urologist. Sometimes I think my cognitive area is slipping a bit, am I tired? Stressed out? Is it Multiple Sclerosis? Continuing to not know the reason for my condition is difficult at times… Will I loose other functions? Lose the ability to fit in…Follow that ridicules conversation…Keep up with active friends…I have all of these thoughts on a regular basis.
I kind of see my life like a bit of a race. I am trying to do all I can, while I can. I try not to think too much about the loss of my younger children who at one time depended on me and now are out rock climbing, extreme motorcycle racing and listening to crazy bands at all hours. Do I bore them? Live changes so I have cultivated rich relationships with others and enjoy my active grown kids when I can. I try to move forward. How much longer will I work? During this life we all have the need to experience a full and rich day. That saying, “when God closes that door, he opens up windows.” We need to make it a point to look for those windows and not put a guilt trip on ourselves about what our future might hold. All of us simply don't know, but we have right now, let's live!.
Thanks for your email Marilyn, More later…