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urethral stricture

Posted , 32 users are following.

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s

hi

i am a 59 year old woman suffering from urethral stricture, are there any women that have suffered from this. i would be interested to hear their story. it seems to be all men that are posting on this forum. i know it is very uncommon in women about 2 cases per 600,000.

0 likes, 83 replies

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  • delores07948
    delores07948 s

    Posted

    I was misdiagnoised with urethral stricture. I had a procedure called Internal Urethrotomy which made me totalling incontinent after the procedure.  I am presently looking for more woman like ourselves that suffer with Bladder disorders mainly ones with or misdiagnoised with urethral sricture.  There is a lot of information about this condition that some doctors like the one who misdiagnoised me are not sharing or protecting women with this condition.  What city do you live in and do you have email.

     

  • donna53699
    donna53699 s

    Posted

    Hello all, I knowthe original post is from 2007, however, I wanted to be able to contribute my experience with a true urethral stricture. 

    1. It is rare in women. 

    2. often times you are not taken seriously when you tell a urologist that you have a urethral stricture, simply because it is that rare. 

    3. Many urologists do not know what to do with it except to perform dilations. 

    I was diagnosed with the stricture over 5 yrs ago and had been going for dilations. The dilations worked in the beginning, but over time they tend to create more scar tissue. 

    I was finally referred to a urologist in NYC that performed the reconstruction surgery and it has worked. Urine flow is much better and no more dilations. 

    Ladies, my advice is to seek out a urologist who performs the surgery. Over time, with the stricture, the bladder gets compromised, and you ultimately damage the interior of the bladder since the urine is sitting in there way too long. 

    If you truly have a urethral stricture, surgery is a better option than the dilations. MIne had gotten so bad that it ultimately was too difficult for me or any dr. to dilate me. I wouldn't wait to get to that point, and the dilations in themselves are painful, present infections, and we all know they are not something that we look forward to. I was going every two weeks for dilations. I originally started going 8 weeks, then it decreased to 6, 4 and then I would have been going weekly. My quality of life was not good, I wouldn't go out or on long car rides. Everywhere I went I needed to know where the bathroom was located. 

    You will need to know where the stricture is located. I would be happy to share my experience or any questions since I did go through with the surgery. 

    Best to all of you :-) 

     

    • bernp
      bernp donna53699

      Posted

      Hi Donna

      Thanks for the information as my stricture continues to be an issue. The question I want to ask is did you develop your stricture as a result of pelvic radiation. The reason I ask is that when I asked my urologist about reconstruction surgery he said due to me having had extensive radiation the area is compromised and he wouldn't advise this. Is your stricture as a result of radiation?

      Also for the women on the forum who have had radiation and have a urethral stricture and catheterize to manage this. How have you been managing ongoing infections. I have been catheterizing 3 times a week for nearly 2 years and in the last year have had ongoing infections. 

      Any info greatly appreciated.

      Donna I'm so happy you have had positive results as it really wears you donw and now you can live a full life. Thanks for the post and I look forward to hearing from you.

       

    • donna53699
      donna53699 bernp

      Posted

      Hi bernp, 

      Thank you so much. I did not have pelvic radiation, however I would still seek out another opinion. 

      here is a great article with regard to the female urethral reconstruction. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3061629/

      They can reconstruct with the skin in the mouth, as well as the vaginal wall. 

      If the vaginal wall is still in tact from the radiation, it may be an option. 

      Each stricture is different (ie. location of the stricture, etc.) so it's not an easy answer.  I would want to make sure that the surgery is absolutey not an option by  speaking to a urologist (or two or three) who actually performs all of the surgeries. My doctor never did a surgery on someone as bad as me, but it was sucessful, and I am now voiding much better. The bladder is not in great shape due to the long term damage, ( I was advised that I have the bladder of an 80yr old man with an enlarged prostate)...

      My goal was to preserve my bladder. I was so bad I was not able to self catherize. My surgeon couldn't even do it, it was so closed up. At some point the catherization may not be an option, if the scar tissue continues to grow due to the catherizations. 

      I would definatley seek a second opinion. Its always worth a shot. Not enough urologists that do not perform these surgeries seem to understand or know how to approach the strictures in women. I

      In office dilations seems to be the treatment of choice by the urologists and then they teach you how to catherize so you minimize office visits and /or so they dont have to perform them (they are just as challenging for the doctors to do the dilations when the stricture is bad. 

      I would seek a second opinion. I am in the US. Read the article and see if who performs these surgeries in the UK. might lead you in a good direction. Holler if you need more information. :-)

       

    • bernp
      bernp donna53699

      Posted

      Thanks Donna I live in Sydney and it has given me something to think about. I agree I don't see ongoing catheterization as being an ongoing solution. I think it's time for me to see someone else I have been toying with the idea. I don't think the vagina would be in good shape post radiation so I will look into it. Thanks for your time.

      I hope this continues to be positive and changes your life and saves your bladder.

       

  • Trackstar1
    Trackstar1 s

    Posted

    I too am 59 years and  just found out I have a stricture after 6 months of always using the bathroom.  My urologist tried to look into my bladder through my urethra and said it was half the circumference. I had surgery to open the urethra but a day later it seems that it's back to being closed off based on my frequent urination. Hopefully he will be able to help me solve this problem.  Have you found a remedy for your stricture?
    • betsy4
      betsy4 Trackstar1

      Posted

      Trackstar1, I am surprised your doctor didn't start you self-cathing.   It will keep you off the toilet, that's for sure!
  • deb2722
    deb2722 s

    Posted

    I hope this thread is still active.  Like others on here I have a stricture and I'm female, so it can't be all that rare!  I'm 56 and have had the stricture for 20 or so years, with no idea of what caused it.  I have had about 20 dilations, which work for a while and I have had to self catheterise for the last 5 years.  I have never found this very easy - especially when out of the house, and I also find that the stricture always recurs.  If anyone has any helpful tips on how to do isc in a public loo without stabbing yourself or covering yourself, your clothes and the floor with wee I would be very grateful to hear from them.  I'm on the lookout for a mirror that I can somehow attach to the loo, preferably with a light, as most loos are quite dark, and I have never yet been able to do it without a mirror.  I do hope someone picks this up and can help.
    • bernp
      bernp deb2722

      Posted

      Hi Deb wow 20 years of trying to manage the stricture you must be so frustrated. In regards to self catheterise I do it but only every second day and the goal of this is to keep the urethra open not necesarily to drain away the urine. I have been doing this for 2 years and this has been relatively successful. I still have a slow flow and sometimes have to sit for a while and wee again after I think I'm finished but I do manage to empty most of my bladder. Is it possible for you to maybe just catheterise in the morning before you leave the house and wee yourself when out? I hear your issues re catheterising out and am sure I would have the same issues if I had to. I too cannot catheterise without a mirror and a large one at that. I have a magnifying one usually meant for the wall and hold it on the toilet bowl between my legs to allow for my hands to seperate labia and hold the catheter. I imagine the constant catheterising is probably making the stricture worse. Is this something you can try. I'm sorry I cannot help re catheterising outside of the house. All the best with this.
    • deb2722
      deb2722 bernp

      Posted

      Thanks for your reply, it's good to know you're not alone with something like this.  I'm only catheterizing so much at the moment as I have an infection which caused my urine flow to stop completely.  Antibiotics got it going again after a day, but the flow is still pretty pitiful, so it's a bit of both - keeping it open and emptying my bladder.  Thank you so much for your comments re catheterizing out - I use a magnifying mirror as well, mine's one of those ones on a stand, either on the floor or if I sit on the loo I put it on a box - both tricky in public loos!  I had a hospital appointment recently with an incredibly unhelpful doctor who basically told me that millions of people catherize everyday - it's perfectly normal - pull yourself togehter!!  I was very upset, and that is what made me try to find other people in the same situation to see how they manage.  Your reply has helped me a lot.
    • bernp
      bernp deb2722

      Posted

      Hi Deb so do you suffer from a lot of infections too? I have had a year of infections and am going in for a dilation and wash in a few weeks. I hear your frustration with unsympathetic doctors! I wonder if they have ever catheterized themselves and if they are male well they don't have to try and locate their urethral opening as it's very obvious and visible even in dark public toilets. I'm sorry I can't help to make it easier but it does help to know your not alone. All the best with finding a solution!
    • deb2722
      deb2722 bernp

      Posted

      My husband was a nursing assistant for a while, and it is his experience that most doctors haven't got a clue when it comes to passing a catheter!  You're right - it was a male doctor - I don't think a woman would be so unsympathetic.  I'm sure it's worse for ment overall though - it's got a lot further to go!  I have been getting a lot of infections lately, but the last two times have been the first when the flow stopped completely, I found it quite frightening.  I'm booked for another dilation, but haven't got a date as yet - months away I think.  Keep in touch it does help to talk to someone who understands.
    • bernp
      bernp deb2722

      Posted

      I can imagine it would be so scary for the flow to stop completely. Can I ask you if you think there are other factors that impact on your flow. I'm 52 and wonder if gynae issues may also impact. I know I have the stricture but at times the flow seems slower than others for no apparent reason. I'm going to explore this a bit further. Has anyone suggested reconstruction? I can't because the area was radiated. There was a post the end of last year where a lady had a successful reconstruction surgery.

       

    • deb2722
      deb2722 bernp

      Posted

      I can't think of anything else apart from infection or the stricture tightening up completely (I have had that a few times and had to go to A and E for emergency suprapubic or dilation - brought on in these last few years, I must admit, by my own putting off catheterizing until it was too late - if I don't do it very regularly I build it up to a real issue, and I can justify not doing it with endless excuses to myself). 

      I have had reconstruction mentioned to me, but there always seems some doubt as to whether it would help or make things worse - i.e. leave you incontinent.  I've tried to research it online, but can't find much about it.

    • bernp
      bernp deb2722

      Posted

      Donna posted 2 months ago about her success with reconstruction and she in a follow up post put a link with information. It could be worth asking her more. What a terrible time you have had and I think what makes it worse is people including doctors don't understand how it impacts on quality of life and it's not something you can discuss easily with people. I find people don't really want to know and especially since it can't be seen nobody really know what you are living with. Just scroll back to Donna's post. All the best.
    • deb2722
      deb2722 bernp

      Posted

      I will do that.  I do tend to tell people (partly because it's hard otherwise to explain why I don't feel I can go somewhere, when I look fine!) but you can't exactly go into any detail!  Thanks again for your helpful replies.
    • Brosarah
      Brosarah bernp

      Posted

      Hi ladies, I am so glad I found this forum. I am a 40 year old woman that was diagnosed by my urologist about 6 months ago with a urethra stricture. After seeing my dr for almost a year with urgency pressure and flank pain, he put me on a many antibiotics, saying it was infections. The urologist wanted a clean sample so she tried to cath me and could not even get a child's cath in, so I had a cystoscopy and an unannounced dilation to get the scope in. It hurt so bad and felt like I was urinating glass for days. She put me on vesicare for overactive bladder then when pain came back, she put me on flow max which just made more pain and pressure so she tried again to cath and no luck again. She did an ultrasound and it show urine retention.

      Her solution is another dialation, but in 2 months. I'm having side pain especially after a long day of not getting to the bathroom often enough. I am at a loss and feel so drained and tired everyday, scared I might be damaging my kidneys. Worried I'm not getting the tests I need. So frustrating that there is not enough information out there and all of the medical studies I've read are outdated.

    • deb2722
      deb2722 Brosarah

      Posted

      Hi, you have my sympathies - I was diagnosed with a stricture nearly 20 years ago (when I was around your age).  I have had a lot of dilations to cope with it, and strongly suggest you have them under general anaesthetic.  They have worked best when they leave an indwelling catheter in afterwards (although last time I got an infection, so am having to have another one as soon as I get through the waiting list - so not soon at all!).  I self-catheterise - to keep the stricture open once it is up and running - but at the moment I'm having to do it to empty my bladder, as it is retaining quite a lot.  It is not that bad and doesn't hurt, so don't worry about it if they suggest it to you as a means of coping.

      My very best wishes to you, and do keep in touch.  Debbie

    • Brosarah
      Brosarah deb2722

      Posted

      Thank you Debbie. I appreciate your knowledge and compassion

      Take care

      Sarah

    • Brosarah
      Brosarah

      Posted

      Debbie, or other ladies that have gone through dialations . I just had my second one, I feel like this one is not healing as fast. It's been a week and I'm having pain all the time. Is there any suggestions to soothe the irritation, I'm on phenazopyrid. It's not burning during urination, just all the time. I feel like my urologist is not sure what to do with me. Waiting to call their office. Feeling so alone in this, and at the end of my rope
    • deb2722
      deb2722 Brosarah

      Posted

      Hi Brosarah

      I'm sorry you're in pain and I do hope it goes away soon.  When I've had dilations I've found that there can be pain just after, but it has always gone away pretty soon.  That said, I do get shooting pains every now and again, but it isn't constant pain.  Very best of luck with getting some help from your urologist.

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