Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Ok....I don't know if anyone has ever had this go on but I figured I'd give it a shot and maybe see if anyone has advice or info.
When I got my first period at 17 it was very heavy and very miserable....I even stayed home from school one day. Then the next one didn't come until like 4 months later. I missed a couple days then too. My mom explained to me that I was probably just irregular. Well I suffered with horrendous periods that would last like seven days with agonizing pain and heavy bleeding. I didn't get to a gyno until I was 20 and she suggested I go on birth control and since I've been it (6 years now) I've been regular and fine.
Well, due to my new disabled-ness and lack of insurance and whatnot I stopped the pill last month. Plus I heard that it's probably not good to take with my high blood pressure. I had no problems and my bp has been normal since I've been on Diovan but still. I wanted to stop the pill anyway.
So, earlier today I was sitting and got a sudden attack of kidney pain in both kidneys and the urge to urinate. I saw some blood and wasn't sure if it was just the hematuria I get occasionally...maybe something from the kidney stones I often get...or maybe (2 weeks late) my period. That was earlier today and I'm still bleeding and in massive pain in my kidneys and pretty much my entire abdomen and feel very nauseous and fatigued. These of course are symptoms I often feel from PKD since my kidneys grew so much.
So...I guess my question is....do you think it's just maybe that I haven't ever dealt with my bad period pains and my kidney pains at the same time and it's a lot on me....or could it be something else? And I'm also wondering if it is an after effect of stopping the pill will it go away after awhile? Or should I go back on it once I can get some medical assistance? I haven't read anything about birth control and how it could possibly affect PKD (if at all) and am really just looking for some information. And maybe some home remedy help???
Sounds like a lot to ask but I've just never dealt with this and am kind of concerned.
Thanks in advance!
When I got my first period at 17 it was very heavy and very miserable....I even stayed home from school one day. Then the next one didn't come until like 4 months later. I missed a couple days then too. My mom explained to me that I was probably just irregular. Well I suffered with horrendous periods that would last like seven days with agonizing pain and heavy bleeding. I didn't get to a gyno until I was 20 and she suggested I go on birth control and since I've been it (6 years now) I've been regular and fine.
Well, due to my new disabled-ness and lack of insurance and whatnot I stopped the pill last month. Plus I heard that it's probably not good to take with my high blood pressure. I had no problems and my bp has been normal since I've been on Diovan but still. I wanted to stop the pill anyway.
So, earlier today I was sitting and got a sudden attack of kidney pain in both kidneys and the urge to urinate. I saw some blood and wasn't sure if it was just the hematuria I get occasionally...maybe something from the kidney stones I often get...or maybe (2 weeks late) my period. That was earlier today and I'm still bleeding and in massive pain in my kidneys and pretty much my entire abdomen and feel very nauseous and fatigued. These of course are symptoms I often feel from PKD since my kidneys grew so much.
So...I guess my question is....do you think it's just maybe that I haven't ever dealt with my bad period pains and my kidney pains at the same time and it's a lot on me....or could it be something else? And I'm also wondering if it is an after effect of stopping the pill will it go away after awhile? Or should I go back on it once I can get some medical assistance? I haven't read anything about birth control and how it could possibly affect PKD (if at all) and am really just looking for some information. And maybe some home remedy help???
Sounds like a lot to ask but I've just never dealt with this and am kind of concerned.
Thanks in advance!
at the very least you should call whichever doctor is involved with where the blood is coming from, both if you are having your period along with blood in your urine.
also possible you have another illness along with the others.
make your first call to your nephrologist, then your gyn if necessary.
let us know what happens.
My urine is back to normal today and it just appears to be a period. I still have pain but it's not nearly as bad. (I always have pain...it's just a matter of the level of pain I can deal with) I got some info on the pill I was taking and the effects it can have on my liver and I just have to consider my options now.
Thank you for your help. I'm doing much better today and a friend sent me some more info as well.
It's just hard when something that never happened before happens....I tend to turn to here rather than panic. ;)
However, I will tell you this. I always had scarry regular periods. Exactly 30 days from the start of one period I would get another. (Usually the cycle is 28 days, but mine is just 30).
Well, from the time I was about 12, around the time I started my period, I recieved a lot of pressure to get on the pill (mostly from my grandmother who was pregnant at 15...). I didn't start it until I was 17 and when I did, my period stayed the same for a while.
A few months in, my period started getting really short and light, like they say it should I guess. Well, I was on it for one year and one month exactly.After I was diagnosed with PKD (after having a short battle with my BP due to another med I was taking - prednisone for poison sumac - along with my birth control decided I didn't want to risk the high BP. As I was sitting in the hospital, before I was diagnosed with anything, there was speculation that I was pregnant. In retrospect I would have prefered that diagnosis.) In all honesty, I never wanted to take birth control in the first place so I was thinking of any excuse not to take it. In my experience it is not as effective as they say (me, marc, marc's half-brother (through his dad), and my dad's ex-friend's daughter, were all concived while our mothers were on the pill)
I stopped taking it at the end of a pack (I figured that would be better than stopping in the middle of a pack and practically forcing a period). If your pills worked the same as mine, at the end of a pack is when you get your period.
When I stopped, that period was a little longer (I guess it expected the hormones from the pill and when they never came it just stopped).
My next period came right on time (much to my surprise, since I expected it to be messed up for a while). Except this time it was extremely painful. I came up with the reasoning that it was so painful because before the pill made it almost painless and I wasn't expecting any pain. I tried to remember back and did recall that I sometimes had really bad cramps (which often included back pain) to the point that I would pace back and forth just to ease the pain a little.
What I usually do now is take a dose of Tylenol (actually the generic brand, haha. works the same) at the beginning of my period and drink some extra water. I'm usually extra thirsy anyway so no biggy.
"Usual" is what's normal for you. There's nothing magic about 28 days except that's what the drug industry decided when they developed the birth control pill (which incidentally was never tested on anyone, just marketed to unsuspecting woman who became the initial test subjects, to the horror of many of the first patients as the dose was dreadfully high and cancer was virtually inevitable).
For pain and cramps, talk with your doctor about some supplemental calcium and magnesium prior to your period and during the first day or two of your period; it can work wonders. Another options is children's Motrin on the day the pain is the worse (since your system isn't used to the ibuprofen, even the small dose makes a big difference). My neph permittted the Ca/Mg for a long time and then I could use 1-2 doses of children's Motrin. Now, no more periods--yeah!
A note on supplemental hormones of any type, either in contraceptives or hormone replacement therapy, supplemental estrogens have been linked to the development of the more additional liver cysts in some women. I find this a great reason not to use them and find an alternate method of birth control and wish I had known this years ago, before I started on them. I don't know if it would have made a difference (my aunt also had the massive cystic liver...she's the only other woman in the family to have PKD that we know of), but it would have been nice to have had an option.
Just some food for thought.
Ruth
And yeah, I've known soo many people who have gotten pregnant on the pill and I've never used it as my only source of birth control, it was because the doctors said it would regulate me.
The Motrin helped some and I don't feel as bad as yesterday.
Thanks again for all the advice.
My gyne recently said she suspects I have endometrosis. It can be hard to diagnose and sometimes hard to treat, although the BCP is often used. I was on it for only a short time in my 20's. I tried herbs, yoga poses and ibuprofen...but often had one or two really bad days a month. You might want to ask the next time you have an appointment if they see any signs of endometrosis.
I hope your symptoms ease up. For those who have never experienced truly painful periods it can be hard to understand how real the pain is.