If you want to learn about MSK or kidney stones in general, you’re in the right spot. Personally, in my 8 years of dealing with this disease I’ve never found such an informative and supportive website produced by physicians. As a contributor to the website, I will be writing occasional Patient’s Perspective Posts. By doing this, I hope to make you feel less crazy and alone because I know it’s a scary diagnosis and disease.
My posts will aim to give you ideas on how to manage your MSK physically and emotionally, from a patient’s perspective. I’m by no means an MD so please consult your physician before trying any of my ideas. I’ve learned a lot about the different diets, pain management methods, things to drink, what to avoid, and simple ways to make yourself feel better and I can’t wait to share them with you. I also want to discuss the dire need for more research on this disease, as a lot of information currently out there is old and/or inaccurate.
But first, I’d like to tell you a little about myself.
I’m Kayla, a 24 year old girl from Minnesota who was diagnosed with Medullary Sponge Kidney (MSK) when I was 16 years old. Apart from living with MSK, I try to lead a somewhat normal life. I graduated from the University of Minnesota with my Psychology BA last year. I’ve worked in medical/public health research for many years, and am currently working full-time on an obesity-prevention/healthy behavior promotion study called HOME Plus at the University of Minnesota as the Project Assistant and Evaluation Coordinator. When I’m not spending time with my couch and heating pad, I enjoy going to the beach with friends, shopping, and trying new places to eat.
As I mentioned previously, I was diagnosed with MSK at 16 years old after I was rushed to the ER in extreme pain one summer. My mom carried me in because I couldn’t walk, and on a pain scale of 1-10 my pain was an 11. This was my first experience with a stone, and because of that I was admitted to the hospital for 2 days for fluids and pain management. We thought it would be a one time ordeal, but we were wrong.
My next experience was exactly one year later during the summer. I woke up with the worst stomach ache that only got worse as the night went on. I couldn’t walk again from the pain, I was nauseous, and had a high fever. We went to the ER again and I was admitted for 4 days with a nasty kidney infection.
I was referred to a local nephrologist who put me on a slew of medications and told me to “drink, drink, drink!” None of it helped. During one of my many CT Scans, my nephrologist noted my kidneys appeared to be spongey and was diagnosed with MSK. She said it was a “benign” disease that would not give me any troubles.
Since then, my MSK has only gotten worse. Now my stones, pain, and infections don’t only happen during the summer or twice per year; they happen every month. In 2009 I was blessed to see a local urologist who not only believed me, he was willing to help me. Dr. Manoj Monga at the University of Minnesota was the first doctor to acknowledge my pain and give me options. I was scheduled for two surgeries (one on each kidney two weeks apart) in summer of 2009, which went amazingly well and we removed 9 stones total! They put stents in following the surgeries and let me tell you there is NOTHING more excruciating than a stent! Peeing is the most painful and awful experience ever with a stent! Even though recovery was difficult, I actually was stone and pain free for a year and a half. It was some of the best time of my life since the diagnosis. I followed a low-sodium, high calcium, lots of water regimen (probably not as closely as I should have, but hey – I felt good!)
Sadly, as with most MSK patients, my stones formed again and the pain and infections came back with vengeance. Dr. Monga had taken a position at Cleveland Clinic and I was left with a urologist who didn’t know what the heck to do with me. We decided to do the same surgery minus the papillotomy in the summer of 2011. It was the biggest waste of time and I regret doing it every day. He only removed 1 stone because the rest were too imbedded in my kidney. Since that time, I’ve been horrible. I have extreme pain every day and I have a UTI every month even though I am on a daily antibiotic. At this point, I’m simply existing and managing my symptoms the best that I can.
I’m basically an 80 year-old woman in a 24 year-old’s body. I come home from work and sit on the couch with my heating pad and pain pills. Without narcotic pain medication, I couldn’t make it through the day and I hate that. In my next post I’ll discuss how annoying it is to not only be taken seriously and not as a drug-addict and on how challenging it is to actually get help!
I hope you found some use in my story, and know that whatever your story is you are NOT ALONE. I mentioned I created a Facebook Group and I encourage you to check it out and join: http://www.facebook.com/groups/Spongelife/
I can’t wait to hear from you and continue writing on KidneyStoners.org. If you have any ideas on what to write about, feel free to comment.
I also made a really ridiculous (thanks, pain medicine!) YouTube video that people seem to really enjoy about my daily battles with this disease, from kidney stones to kidney infections to unexplained daily pain, and my plea for more research.
[youtube]http://www.youtube.com/watch?v=V7aSH-WYExU&list=HL1338481237&feature=mh_lolz [/youtube]
HI everyone, I am currently in the hospital and have just found oud that I have MKS, I have been suffereing for the past 5 years with what I had always thought were plain kidney infections or stones. However; I would go to the ER every few months and the CT would show no stone, I am not on perscription alert as they think that all I am there for is drugs when honestly I am in the worst pain ever. This is probably mt 30th dr plus. that I have seen for my symptoms and the only one that understands and thinks tht I am not searching for pills, he actually found what was wrong with me, but a stent in which is painful in the first place but it is nice to have answers. Now if I could learn better how to live with Medullary Sponge Kidneys that would be helpful
Thank you so much for sharing your story. It is very similar to mine and the doctors I have seen think I am a drug seeker because it hit about once every month or two. I am an RN and have never experienced pain like this. Thank you for making me feel less crazy and weak and making me want to do more research on my own. Thank you so much.
I have had MSK all my life. Now I am 65. I have had recurrent UTI’s all my life. I found that a wholefood diet , no alcohol[or not much ] no tea and drinking lots of water helped me. Recently though I have started having stones, not little ones either. The first two I had blocked my kidney and caused kidney failure. I had them lasered. The next one I passed on a flight, The plane was met with firefighters ambulances it was so obvious I was in terrible pain vomitting ,sweating etc. I was diagnosed with 2 more embedded in my kidney. I was in terrible pain. It all seemed hopeless, my life over stuck with a heat pad and pain killers. I am a Medical Herbalist so I looked all over for a herb that would really help. There are plenty to soothe the inflammation like marshmallow root and corn silk, but to get rid of stones and help try chanca piedra. I had an ultrasound yesterday and now I have 1 stone the other has gone..I have stuck to a low GI diet and at last I can manage to live . No tea or coffee plenty of water to drink. Magnesium supplements and fish oils. help too..I still have pain but doctors have done nothing for me . In fact the drugs damage kidneys.
Hi,
Sorry to hear about all the problems you have had with stones.
I haven’t passed a stone in 4 years. I was just told 3 days ago that my insurance doesn’t pay for CT scans. So now I am waiting to see what tests they do cover so I can find out if my Kidneys have stones in them or not.
I too drink mostly water, I still have my two cups of coffee every morning but the rest of the time its water and sometimes very little juice.
I am on a low oxcilate diet and that seems to help me as well. I have pain in the left flank area most days but doctors say I shouldn’t have pain if I don’t have stones.
Thanks for the story, helps to hear from others with MSK.
Brooke
Thank you Kayla!
I have spoken to you before on MSK. I still am trying to get help.
NO ONE believes me about pain. I am not sure you remember talking with me but her is a little about me.
I am now 42 years old and was told I have MSK back in FEB 2012.
Years ago I passed what was like sand in my urine but haven’t since past any stones.
I deal with Pain almost everyday. I was given pain pills of differant strengths and types and none seem to help much but now I get Migraines from the pain meds. I don’t take anything for pain now but a heating pad!
Constant flank pain and back pain is my biggest problem with this. I was also told that I have Cortical thinning of the left Kidney and thats the side I have most of my pain. I drink a lot of water and have given up pop and tea completely. I still need to cut back on the salt for sure and stop the chocolate, ugh thats a hard one!
I read all the comments on her about surgeries and stents and test, OMGosh I am so scared that thats my future and to have NO doctor to help is BAD!
I am going to see Dr. Durwood Neil this week so I hope he can help.
Everyone make sure you get tested for IC as well thats what I have been told.
I am sure I have stones in my Kidneys but I am worried to find out. I will know soon enough I guess. I find it so hard to keep a Job to cuz being on your feet all day just seems to make it worse. I am not working now but most likely will soo and I am dreading that. I have already lost one good job due to MSK. Do any of you have problems doing the things you love to do and need to do?
Thanks so much and keep it up, be strong and say your prayers.
Hey, Went to see the doctor and he is going to do all the tests that needs to be done and is going to try and find some answers. He did however say that less there is stones there shouldn’t be any pain. Thats a Typical statement isn’t it?
He was also surprized to hear that they found MSK by a ultrasound.
said that was a hard way to determan something so sever. I told him that I had Two ulterasounds by two differant doctors that both said MSK!
I have a CT scan appt. next week so I will finally know if I have stones in the Kidneys and how large the cysts are.
Hi Brooke … How did your CT scan go? I too have always been told a radiologist needs the contrast dye to diagnose MSK. You mentioned to get tested for IC … I am not familiar with that abbreviation (or it’s just not registering today). What is IC?
Hope that you are getting some relief and that you are able to work. The social aspects of work really are important (to me). I hope you are happy with Dr. Neil?
I honestly can’t believe doctors!!!!! I’ve had chronic uti’s for as long as I can remember and was diagnosed with MSK in April 2011. I’m now 32 years old and have had 3 kidney procedures….one of which they found I also have double ureters on my right side……fully functioning….which is what probably saved my kidney. The constant daily ache I have learned to live with, but then there are some days that I’m doubled over in pain. I’ve been back n forth to doctors with no resolve. And it does seem like they could care less. As though though I’m lying about hurting. No one should live like this!!!! I have swelling in my legs sometimes so terribly that my ankle socks are like rubber bands, biting into my ankles. My blood pressure has changed so much since this last September, and they still aren’t trying to help….but instead shoving pills at me. I need to treat the cause, not the symptoms…..yes, they go hand n hand but there must be something that can help!!!!
I have been diagnosed with MSK and double ureters since I was 24, now 57. I have passed (caught) about 70 stones, worse when pregnant twice and then slowly worsening over the last two years, with about 30 stones passed this year alone! I am left with a chronic severe left sided pain, which my urologist is not sympathetic about or probably does not even believe me! (I have gone to the same urology group for 15 years.) I am finally taking control of my life by telling my urologist how mistreated I have been and seeing a kidney stone specialist at OSU 2 hours away. (Ohio State Univ.) I am hoping to find someone interested and up to date on what can help me, as I am in a high powered profession and not willing to let life pass me by. (Of course I say this as I am curled up on my heating pad and unable to get much work done! LOL) Whenever I get down, which is often as chronic severe pain does that to you, I think of the soldier that recently came home with no limbs and can now roll over by himself! We can continue to tough it out, do not give up, focus on the better days and what we are blessed with……..one thing I do is not to complain as much to my family, as it gets “old to them”, and I do suffer more in silence. Keep on researching and looking for doctors who will listen and care, provide your non-caring doctors with information found on the internet about pain in the kidney when no stones are moving….something most urologists do not believe. Def. drink at least 10 glasses of water or more, yes it is hard but you can figure out how to do that, and keep a heating pad with you at all times! Ha ha…I have 5, one in most of my favorite chairs, office, bed and in my suitcase…..inexpensive fix. I also practice relaxation and “going into my zone” methods, so I am not so easily reaching for the narcotics until desperate! I carry my pain pills at all times and prepare for emergencies ahead of time. for example when we travel to other countries I always get travel insurance as a precaution….do not want a lodged stone in Roatan for example, ha ha. YOU can get in and stay in control, just keep working at it! Try to enjoy life when your pain is less, and that can help you get by during the hard times….for whatever reason this is our cross to bear and yes, it could be worse. (FYI for all the men: I had natural childbirth and kidney stone pain a zillion times worse!:)) Please let me know if you would like to stay in contact: ashield@ymail.com.I am a RN as well, which does help in some cases.
Sorry incorrect e-mail: ahshield@ymail.com
I found out I had msk when I was 20,now im 27 and still dont get help from docters,and pain med I never get if I ask cause they think I just. Wanna use the for fun like a junkie,right now I have my bud med card,but that doesnt always help,i have to drink liquer for really bad pain,i hate have to do this and ive leared to balance fluids and food with thos things,but even then,i know my kidneys and liver will gwt damaged,plus I have already gone into liver and kidney failure,both at once,but I can get anyhelp,and I know the way im doing thinf will shortin and maybe ended by it,but I dont know anyother way,and I cant get docters to listen,so yah that what im about,need help
Thanks for sharing your stories. I have had kidney issues since the 3rd grade. I have been fortunate enough not to have had any surgeries on my kidneys. I have had my gall bladder removed and other surgeries but not nothing with my kidneys. I have MSK in both kidneys and I was just recently diagnosed. I have a question. I have been living with this condition for 39 years so what if I don’t want to take the medication? Is it just going to get worse? I have yet to meet with the Nephrologist after the Urine collection test he ordered and the blood work he has done. I meet them next month. I know I have bad days where I just feel awful with nausea, pain fever and have a hard time getting out of bed. I just don’t like taking pills and have adapted pretty well over the years. So what happens if you don’t take the drugs and just work through the pain and nausea? Does it cause more damage or do they really know? I guess I will get my answers soon enough.
Dear Dawn,
I like you have tried to stay away from the pain meds. I have on occasion had to go into the ER for pain control and while pregnant get extra help because I was passing 3 stones on average a week. It was maddening because you have to chose to fix my pain or to keep my baby drug free.I have been dealing with kidney stones for 11 years now and it seems to just get worse by the year. I started out with about 2 stones a year to now about 1 stone every couple of weeks. I take ibeprophen (sp) every day and tylenol. I dont know if it would be better to take a narcotic so I am not taking so much of the over the counter meds but I feel it is better then them thinking i am a pill popper and I have also learned that if I take the pain meds when they are gone my pain seems even worse because I have went with out pain for a while. I am just learning how to do it everyday and it is hard. I just take it day by day and do my best. I have also learned if I dont get enough sleep it makes it worse because I am not in the mood to deal with pain.
good luck!!
Hi Kayla ,thanks so much for sharing your story ! Now I know I am not the only one who is going threw this, I am not the only one they think is crazy or a Hypochondriac ! It is really really sad and defeating when no one understands how you feel or what your going threw living with this disease ! I was diagnosed in November of 2011 after going to the ER in such pain that I could not even sit still ! I had , had a kidney stone back around 2008 and had to have Lithotrypsy <—— I know thats not spelled right but anyway I had a very large stone removed then . I have always had trouble with getting UTI and everytime I go into the DR if I have a urine test done it always always has blood and they same well Mrs.McKissick you have a lots of blood you have a UTI or Bladder infection . But to make a long story short finally with my last surgery in Nov 2011 I got diagnosed with MSK .
As of yesterday I passed a stone on my own , but when I had my last surgery they told me that my kidney's where like a glass of water with lots of sand and it was only a matter of time before they formed and I would have to have surgery again 🙁 My major problem is I dont have any medical insurance so I have to wait until its so bad I cant take the pain and end up in the ER 🙁 And living with chronic pain in you kidney's is debilitating I know some dont understand , but I have had 3 children and I would have 10 more as the pain of labor no where compares of the pain of a stone !
I pray for more research and pray on day to have health insurance so I can atleast get some meds so that possibly it will somewhat relieve pain sometimes !
The last surgery I had with the stent they left in it in for a week and a half maybe two weeks . It seemed forever ,but when they removed it within about 30 minutes my Kidney's started doing some major contracting . I mean like non stop contracting I was nearly screaming , my mom rushed back to the DR where they had to give me a shot to make my kidney's stop the contracting . So I wanted to share that ,when you have a stent surgery you may want to stay close to the DR for the next hour and make sure your kidney doesnt start spasing . My mom didnt know what to do with me as she was driving me to the DR and I was crying near screaming jumping from the back seat to the front because I could not even sit still 🙁
I pray for a cure of this disease I pray for all of us to at least be able to live normal because I am continually like Kayla on the heating pad at home feeling sick and hurting 🙁
It is so greate to chat to the MSK patients who understand what we are all going through.I live in the uk.and my urologists from Peterborough hospital have told my G.P. that my pain is not caused by MSK as they dont understand the disease enough and said there is nothing more they can do for me.They say i have chronic pain but can not connect it to my kidneys.I am so worried now as my doctor wont beleive me any more.They only gave me a scan and no xray or CT which would have showed the stones and gravel. I also know from past experience that i have a stone stuck in the bottom of the tubes as if i stand for long i experience terrible pain.
I was diagnosed with MSK in 1999.I have had several sergeries to remove stones.I went back to my urologist today for a follow up from surgery.The news that I recieved was not what I was exspecting.He said that there are so many stones in my right kidney that there is no way that he could ever get even half of them out.That my options are to put up with the pain as I have been or to have my kidney removed.So my question is have you ever heard of anyone with MSK having a kidney removed?He said that even though that I have stones in the other kidney that they were minimum.
Surgery for MSK stone related pain usually involves removing or uncovering the stones (see our comments on laser papillotomy in our post on MSK). Removing a kidney for pain should be only considered as an extreme last resort and there is no guarantee that your pain will be gone. Especially in a patient with a history of stones, you do not want to be left in a situation with no backup option.
I also have make for 22 years now when I go up the dres they act like I shouldn’t be in pain I’m in agony & the nausea is horrible. I have stone in both kidneys & they say they will pass they treat it like its a joke I’m so glad u wrote. About it but they just don’t really care my urologist. Wished me a nice summer and he will see me next yeah nice tight
thank u for sharing your life .story brave young woman God bless u and pray there will be a cure in time love and healing and blessings
Kayla,
I have suffered from this not nearly as long as you have ( on paper) But I certainly remember being at camp in the summer and having pain as if i were dying, I was 14, I am now 28 and for years I was told I had muscle spasms. I wasnt Diagnosed untill 2010, since then Ive had 9 surgeries 7 on my kidneys, I have had stents placed and less than 24 hours couldnt pee and the dr who placed them refused to see me. I am a Medical Assistant so I know more than the average person suffering from illness. I am very proactive in my health I know when a Dr is BS’n me! Well 2 years after being diagnosed with MSK many Lithrotripsies later I was told I needed to have my parathyroid checked, Long story short I had an adenoma removed from my parathyroid almost 1 1/2 year ago. I am not at my breaking point emotionally its taking a toll on my I am a single mother of 2 boys and my 9 yo worries about me so much its hard to see him not able to just be a kid, not to mention mommy is ALWAYS sick, most days I have to force myself out of bed to interact with them. Im glad someone else besides me is knowledgeable about this and willing to be proactive and help not just them selves but everyone with MSK, We need the dr’s to get CEU’s about this disease, My first nephrologist told me unless i had a stone in my ureters I couldnt possibly be in pain! Thank you for telling your story may God bless us all with a cure ! I joke with my son since he is interested in science he has to come up with a cure for my kidney disease then Aids.
Kayla, thank you so much for speaking out for all of us who have MSK. You are making a difference by telling your story, and being proactive with awareness on all spectrums, community, laws, and for doctors’ to acknowledge that we are truly in pain. Your story helps me to not feel so alone in this world. It is difficult to live a normal life when you are in pain, have infection, and feel sick all day, every day! Not to mention all of the doctors’ visits, surgeries, and test that needs to be done at the very least monthly. I loved your intro to the medication list. When friends come over and look at my counter filled with medication they say “WOW, you have a pharmacy over here.” Although I am sick daily, having MSK has motivated me to live my life to the fullest, and to do everything I can (with pain meds of course) while I can. As you mentioned “how can this not cause kidney failure” always comes to mind. Just having chronic kidney stones increases the chance by 60% to have kidney failure. Thank you for coming forward to let the people know that MSK is a real problem that impacts our lives daily.
Carrie
My story is basically the same as yours! U know ur in trouble when the doctors have to google ur condition! I carry my ultrasound reports with me everywhere i go so the doctors dont think im just looking for drugs!!!
Kayla, I admire your perseverance and I thank you for speaking up on behalf of all those with MSK!
What a GREAT speaker you are Kayla…Ken listened to it all too.
Hang in there and good luck tomorrow
Lovely write up, Kayla and I can’t wait to read more! You look stunning in your picture btw 🙂 x
Kayla, this is a wonderful thing you are doing for us MSKers. Thank you so much for your time in doing this for everyone, even in your condition of feeling so poorly, your such a strong women!
Hi Kayla! Coincidental you have much of the same things I’ve dealt w. I was 21 when diagnosed and have been thru hell & back. I get my pain flareups about every 8 to 12 wks w 7 to 10 day hospitalizations on iv pain meds and fluids. During which time in between you would never know there’s anything wrong w me besides occassional pain here and there. I will have to contact this dr that moved to the clinic as I live 45 min 4m there I have seen many specialists there with no help!
We love you Kayla! Thank you for getting the word out for all of us!
Thanks, Kayla, for this article on your experience. Each person’s story is unique and it helps so much to hear yours as a fellow msk sufferer. Since the current information out there is unhelpful and often inaccurate, when I went looking to understand what was going on with me other patients’ stories were what saved me and I didn’t feel alone any longer. I’m looking forward to hearing more from you!
Paige
What a great job Kayla you have been doing in helping all of us,I love you and feel so bad ,that you suffer so bad being so young,I mite have suffier too when i was younger and was over look as something else…
Love u Kayla I know what ur going through an seriously ur video had me in tears!! Ur amazing!!! MUAAAAAH xxoooooooxxooooooo