Hi, I have been having problems, urinating since july 2013, it started as having to go all the time or not going for over 8 hours, and when i went it was only just a little bit, slowly it got worse, but Aug i was starting to retain water all over my body, had right flank pain that wrapped around the right side and down to my pelvis, i only knew i had to pee because the pain got worse, and my head would feel like it was going to explode, and i felt like i had poison running thru me, and i was going every 15 mins but only a little came out, I ended up in the ER in mid Aug, because the pain got so bad, I didn t have ins at the time they told me i needed to so a urologist, gave me pain meds drained my bladder but not alot came out, they also had me pee and then checked my bladder and it was empty but w/in 20 mins i had to go again, it s like it s not all coming down to my bladder. In oct i finally got medicare, by then i had gained over 10 pds of water weight, still on pain pills, scared to eat because if i ate it made the pressure worse and i stopped drinking a lot. My family dr put my on a water pill and miralax so i woudn t get backed up from the pain pills. My pain gets worse when i move, i have had all kinds of scans and procedures and blood work, nothing shows up, had a ueruodynamics test, that i could barely make it thru, the fuller my bladder got the worse my pain got, it was like my bladder was pushing on a nerve and then i would try to pee and nothing came out, even when putting my hands under water, they said that my bladder works fine, I keep getting passed back and forth to different dr s, been to a gasro had and endo and colonoscopy, nothing, was perfect, had a cystocopy, nothing, had surgery in dec to see if i had another fibroid pushing on my nerves like in 09 which caused the same thing, when i see a gyn and they go inside my vagina and push on the right side where the pelvic cul de sac is, it makes the pain worse in my pelvis and cause the pain in my back worse, they thought i had endo, so i had a laparoscopy, they found 3 cysts 2 of each ovary and one on my right fallopiian tube, they drained them but they said they were normal cysts that women get right before their period, well after the surgery i fell 100% was peeing again, had the sensations, was peeing like crazy and pee d out about 8 pds of water weight, as soon as my bloating went down from the gas they put in got out of my body, ALL the symptoms came back, by then i had nausuea at least 4 times a week, along with all the other pain and peeing problems, at night i have to wear a pad because i leak, not alot but enough to leave a wet spot, also after the surgery my right butt cheek started to be in pain which ran down the back of my right leg and now have a numb leg, the urologist say it s nothing urologica, gyns say its not gyn, gastro says not gastro, alot of them are telling me to see a shrink because there is no way i was better for a week and then it all went back, i refuse to beieve this, this is not the first time i have had something wrong and no one believe me and had to fight to get help, like in 09 i knew something was inside and i had a exploratory lap, and a fibroid was found jsut chilling in the right cul de sac in between my ureter and lady parts, i had a pic of it and it took me going to 3 urologist before someone would remove it the other 2 said it was nothing and wasn t causing my pain, the 3rd one said regardless if it was causing my pain it didn t belong there and took it out and i was all better. Some dr s feel i have scar tissue or something from that surgery but claim they didn t see anything, like how they said in dec they found nothing but the 3 cysts and 2 small spots of endo, but in 5/1 i had surgery, finally found someone to take another look because i am just getting worse, i am malnutritioned,i have no quality of life i am on bed rest and pain pills 24/7 because the more moving i do the worse the pain gets. So this surgery a few weeks ago 5/1/14, i had asked them to please do a real good luck under things and in that area where they push and also asked them to remove my right ovary and fallopiian tube, since i aways have issues on the right side, i wish i never had them do it, i have more problems now and no one will take ownership to ti. So after this surgery it took about 2 days and i was feeling back to myself, i was starving for the first time in 10 months, i had the urge and sensation to pee and pee d out a good portion of all the water i had been holding, then again like in Dec, it all went away and symptoms came back,but now my right butt cheek and back of the leg are in worse pain, and i have way worse cramping then i did before, which i know some is because i am still healing, but i now have no feeling at all in my upper thigh, the area that creases when you put your legs straight and that is near the lady parts, the gyn says it s not related to surgery which makes me laugh because i didn t have that before the surgery, about 13 days of feeling wonderful and being able to eat, i got sick to my stomach because it wasn t use to food, and i threw up, well 5 mins into throwing up i got worse pains then the day of surgery, my stomach and pelvic are swelled, i went into shock, it was horrible, i had no way to get to the ER so i had to deal with shock the best i knew how. it took 2 days to be able to move, but ever since then i am worse with everything and the peeing thing and pain has gotten worse, gyn says it shoudnt have bothered anything he did in surgery, which is weird because all the paiin was in the area where he was in removing stuff..oh yeah they found a lot of endo unde each ovary and removed it, which is funny cause in dec that dr claimed he looked under everything. Now a week ago i started peeing a good amoutn and am not reatining as much water, i went back on my wate pills as soon as the symptom s started to hopefully help the reatining dont come back so fast, so i am happy i am peeing, but now i have no sensation when i am peeing or when i have to go (which is what i have been dealing with for almost a year) i am lucky to get 4 straight hours of sleep, once i do the first pee of the day, and go back to bed 40 mins later i feel like i am dying and have to go pee again, after 3 times i get so frustrated i just get up and sit up and get on the computer. I can t sit for more then 30 mins or the pain gets worse, the gyn said to go to the uro-gyn he said he can t do anything and i need a uro, but the uro s here wont take me as a patent anymore. I do have polycystick kidney disease but my nephro says this has nothing to do with my kidneys and they are working great, though no one seems to care that they are filling up with fluid. I went to a nuerologist, he said he can not get accurate test answers because of the anatomy of my leg s i have had numerous leg surgies as a kid. Had an MRI of my spine and they say it looks great, other then my scolios. I am mentally and phsyically drained from this, no one can tell me why now i can pee but have no sensation and why i get the pains to tell me i gotta go, i use an alarm to remind mysef to go every 2 hours, laying down is worse with the peeing, but siting up makes the paiin worse.. Also when i ask the gyn who did my surgery why i have no feeling in my upper thigh near my lady parts, he said it cant be from surgery which i feel is crap because i have done my research and a lot of woment have had this happen to them because they damaged a nerve, a lot of them also say they lost sensation to pee, i have had that issue since last year. jus stinks because for 12 days i was normal again, no pain. sensation when i had to pee, good flow and no pain after i went, i was no longe sick to my stomach, i actually was sleeping 8 hours straight..no one cane explain why everytime they put gas in me i am good for a week or so. I feel as if once my organs fall back into place it s pushing on whatever nerve controls the bladder. I may have PKD, scoliosis and a leg disability that requires me to wear leg braces but i have never had issues like this other then in 09 and that was because i had a fibroid pushing on my nerves controlling the urinary system. I am scared and mentally/physically drained. i have no energy, i have to force myself to eat, but i can only eat light food so my stomach doesnt get to full and push on my swollen belly, before this most recent surgery i looked 9 months prego and went up 2 cup sizes in my bra, water was going everywhere it could. I have lost my quality of life the dr who did my surgery told me to go back to my neuro, he did not want to waste my $ on a nerve test beccause he knew he wouldnt be able to give an answer, and he isnt even the one who can test the nerves in my pelvis, he only did it so all these dr s would stop telling me to and is very upset they all keep pushing me off and now that no one here will try to help me because i am something they claim to have never seen i have to move and go to Mayo Clinic. Something is wrong with the nerves that control my bladder and now i feel i have damage to the main nerve inside your pelvis which was next to my ovary and fallopian tube. Sorry this is a book, but i have been thru a lot and i have way to many symptoms and pain...i just want to have my sensation to pee back and for my body to tell me i am hungry and no longer be in pain. I dont have an appt with Mayo till 6/18..i am scared the longer wait the more damage i am doing to my body and i wont be able to get fixed. i m only 38 years old, had i know there was a chance my main nerve was going to get damaged and that i was going to have more added problems, i would never of done it. I want off pain pills, my poor legs lost what little muscles they had, i can t do physical therapy because moving makes the pain worse and i cant go to pain management until i know what is wrong, they are afraid of making things worse. I want my life back, my relationship has suffered dearly over this, i live on fruits, and nutritional drinks and the only time i get out of my apt is for dr appts. it stinks and now my bowels are acting weird, i dont pass gas anymore,, my insides make weird noises and i poop my pants alot because i cant feel if i have to poop, this happened after surgery so i stopped the miralax for a bit. Looking for suggestion and idea s, i know deal with mental breakdowns over this. I don t know what i will do if i have to live like this forever.