I break down my different diagnosis in the past years leading to where I am today. I apologize for the length, please try to bear with me, this is actually the short version, believe it or not. ;-)
It makes me so sad to hear other Endosisters tell their stories. I’ve suffered since I was 12 and no one believed me. I’m here with you sister and we aren’t alone 💛
I had a pretty good digestive system about 2 years ago. Then it started to go downhill I noticed. I was so tired all the time I was having just random for what seemed like food poisoning symptoms at times. I went to the hospital where they told me I had 2 giant cysts in my ovaries. I went to an OBGYN and he did the laproscopy and I had severe endometriosis. Then the periods started to get worse and worse and the bowel symptoms as well. My OBGYN refuses to do a bowel endometriosis research...which I suspect I have. I have lost 30 lbs in the last year. Almost lost my job for calling in sick. Been hospitalized twice due to low potassium because of the diarrhea. I get constipated so bad I just do enemas which also bring down my potassium. It's horrible. I'm on lupron as well and I can't stand it. The brain fog and the appetite change is making me feel like I would be better off dead. It's horrible. I feel you. You're not alone.
You poor thing. Was just diagnosed with PCOS. Am seeing an endo specialist in a few weeks.Have suffered with urine infections since being a pre-teen, have IBS. It's tough.
Hi Tiffany, you're probably the first person Iv found dealing with all the same issues as I am! I was just wandering what your day to day symptoms are? I have been diagnosed with IBS, Interstitial Cystitis and am now going to be tested for endometriosis by laparoscopy surgery. Do you get mostly frequency and urgency with your IC? or more bladder pain?
+Michelle Mackinven Hello!! Im happy you found me. But also sad for reason. But I promise we can get through this! I've made big steps, that seemed to be pretty sudden with the onset. With all these, we have to try dif treatments and then just remain patient ...if no results we try again. In my case...I at times feel its very surreal ...kinda in shock that I actually have improved. That being said I do still have pain in my life. Still a work in progress. But so very blessed and grateful to have at least some relief....I know Im finally heading in the right direction. I had frequency and def urgency every time. But yes I KNEW 100% something was wrong INSIDE my bladder. (not just the Endo on the outside walls) I had all dif symptoms, varied from lightening bolts, or like I had snakes crawling around in me and crickets jumping. My bladder had jitters. Other times as I was driving (which is painful for me) I'd feel as though my bladder was filled with acid, every motion, bump, stop, go...just felt like acid sloshing all over in my bladder. Other times it felt like a bowling ball pressing down, sometime my body would cause me to bear down and push...(even though I've never given birth before, so idk what its like in that respect). but the pain was so bad and all my muscles are so clamped that my body felt like it was trying to reject my bladder. That same thing happens at times with my Endo, I feel it ripping off all my walls, all my organs, it makes me wish I could just pull it all out in one motion and have it over with. The longer it remains in high pain, causes my body to try to push.....its such a terrible thought I know. But in those time my body takes over and does what it thinks needs to be done. This is why we have to stay persistent with our Drs. Our bodies tell us more about our individual selves than what Drs have learned as a general understanding. We have to listen to our bodies and in return our Drs need to listen to us!! Its terrible we have to live our lives with these conditions but ....the key word is to "live". Once we can get to a place in our treatment that we can partake in the things we enjoy, family and friends then its all good! We learn our limits. It may not be what we used to be able to do but we will find a new normal....and after all our struggles and fighting, EVERY single second feels like the most amazing gift we could ever receive!! When is your Lap surgery scheduled for?
I get urgency and have to go. plus I get bloated and look like am pregnant plus bladder/ urthera pain and most of time when I pee it doesn't go down it goes up or side ways sometimes down I have endo so am not sure if that's messing with stream or what but I hate all of this crap.
+DR ENDOMETRIOSIS BRANDIE (.) I too hate all of this. Im sorry you have to live life with similar struggles as myself. Im not for sure that IC would mess with the change or urine direction. However its not normal have urgency as well as pain in bladder and urethra. Did your Dr refer you to a Urologist? Do you have Endo on the outside of your bladder?
sending hugs I know how you feel it sucks but stay strong. my Dr thinks I have ic because caffeine alcohol using the citric acid makes me hurt plus my urethra hurts and when I pee sometimes it goes up or hits my thigh sry for tmi . Thank you for sharing oh do you get bloated before you have to pee I can't hold mine
+DR ENDOMETRIOSIS BRANDIE (.) No such thing as TMI when we live daily with chronic pelvic conditions. Sad but true. Yes all 3 of those things can certainly effect an IC bladder. Many ICers describe urethra pain as well. When you say you cant hold yours...is it that once your brain gets the signal that you need to go, its an immediate need? Urgency has always been an issue with me, but progressively got worse over the years. So when the Drs just thought it was a kid being a kid....I realized as an adult that it cant possibly be normal. As for your question about getting bloated before going to the bathroom...with IC there is the same term used as with Endo...the "endo belly" and the "IC belly" I know with the pain from IC my entire posture changes. One of the ways I used to describe my symptoms to drs was that my bladder felt like a balloon that was at ALL moments being over filled and would feel like it was literally going to explode inside of me. Which I've since learned is because of the damage to my bladder lining I can feel every single drop as it drips into my bladder, where someone with a healthy bladder may not realize that its a continuous thing. They may think there is a gate that opens to let urine in the bladder and that's when they know they need to go. Where in fact its works more like an IV drip of urine going from the kidneys to the bladder. The other reason I felt like it was going to explode was because my bladder has less elasticity and cant stretch to hold even close to the amount a healthy bladder would be able too. So with healthy people once they realize they have to go, they don't HAVE to go right away, their bladder is able to continue to stretch, allowing the person to be able to hold it until they can get to a bathroom, or until they finish the movie they are watching, finish dinner, wait until morning to go to the bathroom. With IC our bladder isn't capable of "just holding it until......."
+Tiffany13 I was diagnosed with IC at age 23, the nurses kept telling me I was much too young, they also could not understand why the DMSO was burning the heck out of my bladder, they kept telling me how they had much older patients that did fine with the DMSO. I felt like they didn't take me seriously, even after my diagnoses. Ugh. It's the worst when people, especially in the medical field make you feel like you're issues are not real! ((hugs)) I have never been treated after that, I am now 40, I was told some years back I have fibro because I have chronic back pain, I keep telling these dr's I feel it's from the IC, but I have had urologists tell me that my low back pain could not be from IC. I have looked it up and there are so many people with IC that have chronic low back pain! I have lost faith in dr's.
+Destiny Huerta - destiny youre right with your conclusions regarding ic and lower back pain, if you look up professor malone lee from the uk he has done a study which shows truth that ic and chronic uti's are because of an imbedded bug which affects the whole pelvic area including lower back pain. Are u from the uk?
urethra pain I have had for 2 years but this year its been getting worse and I had endo on inside /outside of bladder Dr got it he said but he did check me for ic plus my bladder is prolapsed he said I have to see gynecologist/ urologist. My PCP thinks its ic because coffee/ alcohol/ the citric acid foods make me hurt so bad but am in process of getting insurance . My cousin has ic and she told me you don't have it because you can pee ppl with ic she said has pain and have trouble peeing they have to catalyze there self's but my think is everyone case is different right. I'll no more about me when I go to Dr.
There is so much not known about ALL of what Lupron does to our bodies. One report stated infants born post IVF/Lupron treatment with rare cancer, autism, seizures and brain tumors, and emails about children and adults with enlarged livers, Hashimoto’s thyroiditis, autoimmune arthritis, complaints of depression and memory loss, Guillian Barre, diabetes, psychotic episodes, Sjogrens syndrome, “parathyroid carcinoma”, as well as universal complaints of every possible variant of bone pain. The list does go on and noteworthy are the alarming numbers of young and middle-aged women who are now permanently disabled. Lupron truly needs to be deeply investigated and permanently removed!
