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  1. #1
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    01-23-10
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    Angry My Nephrologist deceived me Question on PD and erectile dysfunction

    You could say I'm pretty pissed at my nephrologist, for selling me on the idea of PD Dialysis. He pointed out all the wonderful BS benefifits of PD over Hemo. Problem is, he left out all the negative effects, such as skin disorders, itching, twitching, body spasms and most hidious of all erectile dysfunction. Everything was working fine before the insertoin of the PD catheter, evenafter the attack that landed me in the hospital. There was no problems with the plumbing, none what so ever. I even had sex with my fiancee after being released from the hospital only 3 days before the catheter insertion. After the catheter was placed and sex was again tried, I could do it! And trying made it emmensly painful. I was never told before the catheter insertion that thi could happen ti me. I am reallu pissed now, the engagrmrnts, she has left for another man, one who can help produce a baby, and my nephrologist does nothing but lie and make up excuses. I've switched to hemo, it still have the PD catheter, I want it out! What I want to know; will my sexual functions return to normal after it is removed or did the butcher do permanent damage to me?

  2. #2
    Join Date
    08-17-04
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    You certainly sound angry, and no-one would blame you for that--but I don't think this is your doctor's fault, or that he misled you. In 20 years of working in this field, I've never heard of a PD catheter physically causing ED on its own--though, certainly, it could cause psychological effects. One way to tell the difference is to wrap a string of old-fashioned perforated postage stamps around the penis at night when you go to sleep. If the perforations are torn in the morning, it's because you've had normal erections during the night. If they are still intact, there is a physical problem.

    ESRD itself--regardless of how it is treated--is known to cause ED problems. Testosterone levels tend to drop--and this can be treated by a doctor. The effects don't usually happen as FAST as yours did, which is what makes me think it may be more psychological than physical. Having a tube emerging from your belly is a nasty shock, and even if you are intellectually ready for it, you may still have an emotional reaction that is unpredictable. Will your function return on standard in-center HD? Perhaps. But your best bet to stay as fully sexually functional as possible is to get a transplant and/or as MUCH dialysis as possible. In one very small study done at Satellite Dialysis, people who had done several types of dialysis were asked to rate how happy they were with their sex lives on a scale of 1-10, with 1 being very unhappy and 10 being very happy. Their rankings were something to the effect of:
    -- Standard in-center HD (3 times a week for 3-4 hours): 1.2
    -- Short daily home HD (5-6 times a week for 2-3 hours): 4.6
    -- Nocturnal home HD (5-6 nights a week for 8 hours): 9.2

    You might want to read the Kidney School module about Sexuality and Fertility. It's free, and you can find it at http://www.kidneyschool.org. There's a lot of good information about body image, testosterone, treatments, etc.

  3. #3
    Join Date
    01-23-10
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    3

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    Quote Originally Posted by Dori Schatell View Post
    You certainly sound angry, and no-one would blame you for that--but I don't think this is your doctor's fault, or that he misled you. In 20 years of working in this field, I've never heard of a PD catheter physically causing ED on its own--though, certainly, it could cause psychological effects. One way to tell the difference is to wrap a string of old-fashioned perforated postage stamps around the penis at night when you go to sleep. If the perforations are torn in the morning, it's because you've had normal erections during the night. If they are still intact, there is a physical problem.

    ESRD itself--regardless of how it is treated--is known to cause ED problems. Testosterone levels tend to drop--and this can be treated by a doctor. The effects don't usually happen as FAST as yours did, which is what makes me think it may be more psychological than physical. Having a tube emerging from your belly is a nasty shock, and even if you are intellectually ready for it, you may still have an emotional reaction that is unpredictable. Will your function return on standard in-center HD? Perhaps. But your best bet to stay as fully sexually functional as possible is to get a transplant and/or as MUCH dialysis as possible. In one very small study done at Satellite Dialysis, people who had done several types of dialysis were asked to rate how happy they were with their sex lives on a scale of 1-10, with 1 being very unhappy and 10 being very happy. Their rankings were something to the effect of:
    -- Standard in-center HD (3 times a week for 3-4 hours): 1.2
    -- Short daily home HD (5-6 times a week for 2-3 hours): 4.6
    -- Nocturnal home HD (5-6 nights a week for 8 hours): 9.2

    You might want to read the Kidney School module about Sexuality and Fertility. It's free, and you can find it at http://www.kidneyschool.org. There's a lot of good information about body image, testosterone, treatments, etc.
    Thank you for your reply Dori, my guess is you are a dialysis nurse? I recall seeing another posting elsewhere, where the patient asked about body spasms and twitching, he got a reply from a dialysis nurse that said she never heard if such a thing in her 16 years of being a dialysis nurse. I couldn't believe it as I also suffer body spasms and twitching. So I searched it on-line and found many reputable sourses that not only confirmed it happens , but also said it was a result of the Dextrose in the PD Dialysis solution. One sourse that confirmed this was the British Kidney foundation.

    Like wise I've done searches on; Kidney Disease and erectile dysfunction, I couldn't find one article that supports that theory. I've searched Hemo Dialysis and erectile dysfunction and like wise not one article to support that theory either. But when I searched PD, Dialysis and erectile Dysfunction, I found page after page to support that theiry. Try this yourself and you will be surprise at how many articles toy will find to support this claim, and many by doctors and reputable sources. Now from experiance alone, even after my full out attack of end stage kidney failure and hospitalization I was able to return home and engage in sexual activity without and pain, problems or discomfort. Shortly after my operation where the PD dialysis tube was inserted, I had tried to engage in sex again, and not only could I not get it up, but when my partner touched me there I discgarged immediarely and the pain was so intense I couldn't believe it. So I ask, how could I engage in sex after a full blown renal failure after leaving the hospital with no discomfort or problems, but when I tried after the PD surgery, it wouldn't no longer work for me?

    Also try searching skin disorders and PD dialysis, I'm sure you've heard from the doctor that they are a result of toxins, and some of them indeed are, but it is not the toxins alone that are at fault, but retained water from the dialysis solution and dextrose that are searching for other ways out of the body, they are what transports these toxins to the surface of the skin causing itching and in some cases pimple like sore that later break or burst due to scratching. You will find on-line many articles that support this also and many from reputable sources. Now I ask, how many doctors are willing to admit to this to their patients? It is much easier for them to say, oh it must be your urea levels. or your toxin levels. or it's a result if kidney disease. And sure it is a result of kidney disease, they just don't include it as a result of the treatments. Before the hospitalization, I was toxic for 7 years, I had headaches, got sick a lot, but never did I twitch, itch or have erectile dysfuntion until immediately after the insertion of the PD catheter.

    My doctor and his nurse tried saying it was a result of toxins, urea levels, kidney disease, but when I showed the doctor proof through reputable soures such as the British Kidney Foundation and other doctors, he suddenly started trying to change topics away from my complaints. It was as if he knew I was on to something that he did not want to admit to. At the time I had these other ailments bothering me, sinus and throat congestion, and a gastritis attack which kept me be bound for a whole month, and upon telling him of them he just brush them off as if they were not outside causes but due to my kidney problems. He made no examinations, no tests, and not even referal to other doctors in those fields, he just made guesses. So I complained to patient relations, and they must have spoke to him because he had met with me at the Hemo Dialysis center. Yes I decided to switch to hemo, but I still have the PD catheter. Aws I knew he would have another person there as a third party, I also had my son there. When confronted on certain issues, he often tried changing subjects. For example I told hom of an adticle where they asked men on PD dialysis if they suffered erectile dysfunction, 65% of the men said yes. With that he said, well what about men on other forme of dialysis. I said what about them I found no evidence to say they suffered erectile dysfunction. Then he seemed to get angry and started blurting on about security for 15 whole moimutes, saying if he called them I'd be thrown out into the street and then no one would treat me. Yet he had no call to say such a thing as we my son and I were as calm as could be. So I told him he was getting off topic and he came back to topic. So I asked him, are you going to just do guess work or are you going to look into these other problems? He said he didn't need to as he was sure they were nit what I thought, refering to mythroat and nasal problem and gastritis. My son the asked how can you be sure without doing a check up. You see I've had a 33 year history of gastritis with other dovtors by that time, but he was **** sure it was kidney related. So I said, well if you won't look into them, then I guess I will have to do something else. He then said "what are you threatebing me" I said, No. He was beginning to get angry and said well then what is it you are going to do. I said I did not wish to discuss it at that time. He then leaned inmy face while I was on the hemo machine and said, "because if you are, I'll" at that point my son cut him off by saying, sounds like it is you threatening him. At that point he blirted out something like, well if you want to bring your lawyer next time. To me and my son that sounded like an indication of guilt as we never mention lawyers or legal actions, in fact the something else I didn't tell him about was simply a referal to seek a second medical opinion.

    I believe he knows the PD dialysis is the actual cause of the problems, I've even been reading some of his on-line work on the negative effects of PD dialysis and that of his colleges. There are strong indications that it is indeed the dialysis and catheter that cause many of the problems and not the disease itself.

    I do appreciate your responce and I will check into the info, and study, article and link you provided. But I ask that you do the same. Search Kidney disease and erectile dysfuntion and skin afflictions, search hemo dialysis and erecttile dysfunction ect and then search PD Dialysis and erectile dysfunction and skin affictions. You may be surprised at what you find. Bot everything is so text book and if you go outside the box that you probably were trained in, you may discover a whole other world that no one botherd to tell you about. I never take anyones word on anything without examining all proabilities and possibilties. But I do check out everything and I will check out what you have suggested. I just am hoping you can do the same. Thanks again for your help, and hopefully you will not feel offended. I know my best chance is a transplant and ny son has offered me a kidney. My main concern is, if my doctor actually did lie to me, then how can I trust him when the time for the transplant comes around?
    Last edited by My Nephrologist is a Jerk; January 23, 2010 at 08:49 PM. Reason: typo's using faded keyboard, can't see the letters on the board

  4. #4
    Join Date
    08-17-04
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    I'm not a nurse--but I have searched the literature on this very topic, both to edit the Kidney School module on sexuality and as research for a book that I'm working on. Sexual dysfunction is very common in ESRD, in both PD and HD. If you have diabetes, it's possible that instilling the PD solution pushed your sugar levels over some "edge." Not sure what would account for the pain you described, unless you possibly also have a hernia that allowed fluid to leak into your scrotum? You'd have probably had some swelling that would have alerted you to that problem.

    You might ask Judith Bernardini--our expert PD nurse, who has her own message board--if she's run across a problem like yours. She's been a PD nurse for more than 30 years, and may have some experience that can help guide you.

  5. #5
    Join Date
    01-23-10
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    Quote Originally Posted by Dori Schatell View Post
    I'm not a nurse--but I have searched the literature on this very topic, both to edit the Kidney School module on sexuality and as research for a book that I'm working on. Sexual dysfunction is very common in ESRD, in both PD and HD. If you have diabetes, it's possible that instilling the PD solution pushed your sugar levels over some "edge." Not sure what would account for the pain you described, unless you possibly also have a hernia that allowed fluid to leak into your scrotum? You'd have probably had some swelling that would have alerted you to that problem.

    You might ask Judith Bernardini--our expert PD nurse, who has her own message board--if she's run across a problem like yours. She's been a PD nurse for more than 30 years, and may have some experience that can help guide you.
    Here's an interesting fact. When I ended up in the hospital the doctor said my kidney function was at 3%, now he's guessing it's at 0%. But I still urinate fine by myself. While doing hemo, they do not take off any extra fluid. Also I am not a diabetic. Now if my kidney function was that low, how come I still can urinate? And remember the sores I was talking about, well I wasn't able to get rides this week to the hemo clinic, so had to do PD at home and now my back, chest and arms and legs are covered with them and they get very itchy. They only appear when I do PD. Same with the spasms and twitching, only when I do PD do I suffer from it. when I do hemo, or no dialysis at all they go away. I never had any of these symptoms before PD dialysis. Because of all these factors, I am very egar to have my PD catheter removed and hopefully as quickly and as soon as possible. I did have some swelling a few weeks ago in the area of my prostate gland, it was very painfull and felt like I had to pee and have bowel movements constantly and there was mostly blood in the bowel movement, no stools, and that was immediately after a huge bowel movement after my month long gastric attack. I believe the large bowel movement caused the PD catheter to sift position for a short while which caused the swelling while doing PD. That has gone now, but was extremely painful at the time.

    I've also had this nasal infection for 4 full months now, but when I told the doctor, he said it was nothing, well now the nothing has spread to my throat also. It took my complaining to patient relations before he would act on it and refer me to a specialist, problem there is my appointment for that isn't until August 16th. I tried seeing my general practitioner about it, but he's the kind of doctor you wait in the office 3 hours to see for only 5 minutes, no examinations were done and he wouldn't refer me to a specialist as he expects my Nephrologist to do that. In the mean time my now nasal and throat problem is just getting worse and I've had to ask a friend to refer me to a doctor that'll take a good 45 minutes to examine me, but even then that appointment isn't for a month yet.
    Last edited by My Nephrologist is a Jerk; January 24, 2010 at 12:41 AM. Reason: typo

  6. #6
    Join Date
    06-25-04
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    Kansas
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    Are you wondering if you really need dialysis at all? If so, you can calculate your own GFR, the measure of kidney function that doctors use to determine the stage of kidney disease you have, using an online calculator. All you need to do is enter your most recent creatinine, your age, your gender and whether you're African American or not. Be sure to click on mg/dL or μmol/L depending on how your creatinine is reported on your latest lab report. Patients need dialysis or transplant when their GFR drops to less than 15.
    http://nephron.org/MDRD_GFR.cgi

    You can still urinate even if your kidneys are not functioning to remove wastes from the blood. Patients doing hemodialysis often urinate less over time which affects how much fluid they can drink and still have enough fluid removed during dialysis.

    Itching (also called pruritis) is common in people with kidney damage and kidney failure on hemodialysis as well as PD. Many times itching is related to high blood levels of phosphorus. Sometimes it's produced by an allergy. Sometimes it's related to uremic toxins and dialysis that isn't removing enough of them. It's possible that PD wasn't working for you as well as HD is now. There are treatments for itching, including keeping phosphorus under control, avoiding allergy producing things, getting enough dialysis, and using oral medications, light therapy, and itch-reducing lotions. Looking at your labs will tell you if your phosphorus is too high or your dialysis adequacy (URR or Kt/V) is too low.

    So far as your sexual functioning is concerned, patients with kidney disease and kidney failure often have erectile dysfunction. There are some medical and psychological factors that are known to contribute to ED and there are treatments for ED if patients report that they have it, are willing to get treatment, and see a doctor that knows about ED. Urologists and sex therapists are more likely to understand ED and its treatments than nephrologists. Here's an abstract of a review article on U.S. patients that might be of interest to you (some of the studies you read about are on patients in other countries who may have different treatments from those in the U.S.):

    Adv Chronic Kidney Dis. 2007 Apr;14(2):119-25.
    Sexual function in chronic kidney disease.
    Anantharaman P, Schmidt RJ.
    West Virginia University School of Medicine, Morgantown, WV 26505, USA.

    Endocrine abnormalities are common in patients with chronic kidney disease (CKD) and lead to sexual dysfunction, anemia, hyperparathyroidism, and altered mineral metabolism. Common clinical problems include disturbances in menstruation in women, erectile dysfunction in men, and decreased libido and infertility in both sexes. Organic factors tend to be prominent and are related to uremia and other comorbid illnesses. Psychological factors and depression may exacerbate the primary problem. Alterations in the hypothalamic-pituitary axis are seen early in CKD and tend to worsen after patients start dialysis. Hypogonadism plays a dominant role in male sexual function, whereas changes in hypothalamic-pituitary function predominate in female sexual dysfunction. In patients on dialysis, treatment strategies include optimizing dose of dialysis, correction of anemia with erythropoietin, and correction of hyperparathyroidism. Successful kidney transplantation may restore normal sexual function, especially in younger patients.
    Beth Witten MSW ACSW LSCSW
    Medical Education Institute, Inc.

  7. #7
    Unregistered Guest

    Default Re: My Nephrologist deceived me Question on PD and erectile dysfunction

    just don't blame your Doctor.Things can be made better even.

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