First and foremost, I would like to specify what I was actually diagnosed with by my past Gynecologest. He concluded that I had Interstitial Cystitls back in 2007. Basically, according to research and the medical description, IC is a chronic inflammation of the lining in the bladder,characterized byshooting, stabbing, and burning pain in the pelvic region, including horrible pressure and muscle spasm. What I have gone through is this, every day of my life since I had a cesaerian with my child's birth in January of 2007. But this is not all.
I have always suffered from chronic back pain due to scoliosis and kyphosis(curvature of the spine), as well as chronic fatigue due to Fibromyalgia. For those of you who are not familiar with FM, it is well, what I just described, including having a severe consistent feeling like that of flu-like symptoms; aches and pains throughout the whole body, having low energy most of the time, and feeling drained. Fibromyalgia patients are affected by climate, environmental, and social stress. I have a sensitivity to light, sound, and I get poor sleep. But I would like to talk more about IC.
IC is deadly, and there is no cure for it. I am not entirely certain that I have IC, because there are other related conditions that can mimic this illness. I have been researching a lot, and I have personally concluded that it may be a neurological disorder, though, I am not the expert. I would like to explain further about the symptoms. First off, I find myself in constant pain, mainly with a feeling of a prolapsed bladder, and over time, I find myself getting up to go to the bathroom anwhere from 30 to 80 times during the day, and nightly, on average, sometimes, I get up every 2 minutes with the strongest urge to urinate, yet now I am suffering from urinary retention. This is all part of Pelvic Floor Dysfunction.
PFD is terrible to live with. You may be wondering if it affects a person's sexuality. Yes, absolutely. It is difficult to have intimacy, but, not impossible. I just got married a little over two months ago, and we both knew that this would be something to "deal with carefully". Stress and poor sleep can lower a person's libido first of all, and second, having pelvic pain and pressure, well, need I say more? I have a lot of nerve damage, not to mention. My husband is the most compassionate and understanding man, with unlimited self-control. I have known him for a long time, andwe have gained a deep friendship, so that is important in a relationship, in which one or the other individual suffers from IC or PFD.
Usually, the use of narcotic pain medication, such as Hydrocodone(what I have to use for now) helps most definitely for the muscle spasms, and aids in ability to have sexual relations. Without the pain medication, sex is pretty much non-existent(not all the time though). I used to feel guilty, like I was cheating by having to use a drug in order to enjoy intimacy, however, I have realized that I must use the pain medication to function at all, for now. Love is not just physical, but emotional, and intellectual, and if you have trust, you will have some form of intimacy, if you get adequate sleep, and relax....sometimes just holding hands is precious, and holding one another is a gift you can share.
I have some hope now, because I finally am going to see a specialist this week, which maybe, can help me with a treatment and not just a drug.
By the way, in January of 2008, I hada supracervical laparascopic hysterectomy(the removal of my uterus only). That didn't help. I have read that surgery can lead to IC, PFD, and the other conditions related to these, due to nerve damage. The spinalchord is connected to so many nerveswhich affect organ function. I also have IBS(irritable bowel syndrome) and I suffer from some form of mental illness, which is brought on by the physical ailments. I have anxiety, depression, and occasional panic attacks.
Insomnia is an issue, due to the nighttime frequency(20-80 times in one night). I am unable to get many household things done, and I definitely am unable to work. IC patients are disabled, and this is hard to get through to most people, because 'we don't look sick' sometimes. IC(or PFD) is an "invisible disability". I am the kind of female who loves to get prettied up, dressed up, makeup done, hair done, you name it. So when I have to run down to the grocery store, pharmacy, or even a doctor's appointment, I take the opportunity to get made up, that is, when my pain is under control, or if I'm having a good day(rare). People say I look great or "fine" or compliment me. I just have to say thank you. But they don't understand, and more than likely they never will, or they just don't want to.
Having to depend upon others is a must, and though I would like to do so many things on my own, I cannot. You must find a support system.
I have to stop now, for I'm losing my train of thought, though, I think that I have made my point. What I have been going through isa nightmare, and it affects the people around me, not only myself. I used to be extremely social, but I tend to isolate, only because I am not well, physically. I stay away from stress, if I can help it. I must. And if I were to not have any faith at all, or anyone who cared for me, I probably would have killed myself by now. That is how serious the pain is. If you feel you may be suffering from the same thing, fight for the right to get the treatment you deserve, and having an advocate is definitely recommended.
Ask me more, and I will try to explain further...