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urethral stricture

Posted , 32 users are following.

s
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

83 Replies

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  • bernp
    bernp s

    Posted

    Hi Brosarah I'm sorry you are in so much pain. I have had 2 cystoscopy and dilatations and for both I was in a lot of general pain in the area for 2 weeks. It surprised me both times how much pain I felt for a few weeks. I remember thinking it took a full 2 weeks for me to feel better. I recently had a hysteroscopy and I had no pain after the first day. It was a real reminider for me that I have issues in the urethra and bladder area and need to make allowances when I have another one. I don't feel like doing anything and am quite miserable afterwards. I think I just took panadol afterwards and of course was on antibiotics as a precaution post procedure. I will take a week off work next time and allow my body the time to heal. I hope you get through this ok.
    • Brosarah
      Brosarah bernp

      Posted

      Thank you, it helps hearing that there are actually other people who are going through this.
  • sarah1993
    sarah1993 s

    Posted

    I'm a 22 year old female who has had urinary issues since I was 12. After years of getting tested for UTI's (that ALWAYS came back negative), I finally put my foot down and got a specialist when I was 18. He diagnosed me as having IC. I was also diagnosed with Endometriosis, so I had most of it taken out. After years of Elmiron, and Heparin/Uracyst instillations every week at the hospital, I decided to say "Screw it" and get a new urologist. Every time I told him that the Heparin treatments weren't working and him blowing me off, I decided I needed to find someone who would listen to me.

    I just saw my new urologist a week ago and had (my 6th) cystoscopy done. He noticed a Urethral Stricture that was very long and very bad. How the heck didn't my old urologist notice that?! So he preformed dialation on me. Started at size 14, and I got to size 24 before I said "Okay I can't handle it anymore". Its been a week and I think? I can urinate somewhat normally now ... I think. Idk, I can't remember what 'normal' is, or if I was ever normal ... but the pain is still there and is still horrendus. I still can't leave the bathroom. The fact I have a baby and am still able to spend time with her (stuck in the bathroom unfortunately) has been somewhat of a miracle for me. However it still doesn't seem to fix the problem as I seem to be back to square one ... within a week!! I was starting to feel hopeful when I was finally able to urinate 'normally' for once (even though the pain was still the same). Now its gone within a week ... I don't know whats going on with me anymore, and I honestly don't know what to do next. Don't know what to say ... I just want it gone so I can live a normal life again sad.

    • sarah1993
      sarah1993

      Posted

      Does anyone know if this can be cured at all? Or is there any hope at all for me? I'm in constant pain, all day every day. I've been like this since I was a kid and it just keeps getting worse every year. I'm just so depressed and have lost all hope ... I just don't know if I should hold onto hope, or if it would be easier to lose it and accept that I'm screwed for the rest of my life ...

      By the way, can rape cause this? I know its a silly question but ... my mother is curious.

  • dmn0502
    dmn0502 s

    Posted

    Hi Ladies, 

    I came across this discussion tonight, and felt for the first time like i wanted to write about my problem. I am 37 yrs old and was diagnosed with less than 20% kidney function in my left kidney, due to a urethral stricture. It seems the stricture was caused 5 years ago from keyhole surgery for removal of an ovarian cyst. The kidney is being monitored because it is boderling whether it needs to be removed, which I am slowly dealing with, but I have now been informed that my bladder is only half emptying when  I urinate, so I have been sent home with catheters to ISC once every day.  Does anyone else struggle with doing this? It is not painful, or uncomfortable, but to say i am holding 200-300ml of urine every time, I very rarely successfully remove more than 50ml of urine, sometimes nothing at all. I am getting really frustrated with it because all the websites and forums say how easy it is, so why cant I find it easy? Any tips will be greatly appreciated. Thanks x

     

    • Brosarah
      Brosarah dmn0502

      Posted

      Hi dmn0502,

      I watched a video in the office and was sent home to catheter too, yeah I'm not very good at it, and mine hurts because my stricture is so tight. I now use lidocaine room try to help. I find that you have to find the direction that your stricture wants you to aim the catheter and I have to give myself plenty of time and be totally relaxed, well as a relaxed as can be. Needless to say I am not one of those people who can cath anywhere line in the videos. I am so not an expert and I am new at this, I hope things will get easier for me and you!

    • deb2722
      deb2722 Brosarah

      Posted

      It's really not easy with a stricture is it?  The last doctor I saw seemed to think I was making a fuss about nothing, but like you I have to get the angle right and get very stressed if it goes wrong.  I cannot do this anywhere either, only at home where my mirror set up works for me.  I have found that Lofric Sense catheters made it easier - they come with their own water which makes less fuss and the  handle is easier to hold.  I'm sorry you have problems too.

       

  • Lexieloo
    Lexieloo s

    Posted

    I see this is an old post, but had to reply. I too am female and had a urethral stricture. According to my specialist, who examined me under a general anesthesia, I had "the tightest urethra she had ever seen". She opted for surgery and opened the scarred area right up to try and stop the urine going back into the kidneys and causing infections all the time. It is called a bouginage, hope this is the proper spelling. It was't successful and left me incontinent. So now, I have constant infections, which are scarring and damaging my kidneys and I have to wear pads.....they are like nappys. I have to wear the male pads, she cut far up the front and I pee upwards....the girl pads don't compensate for this type of urination. Mine was caused by an auto immune disorder that caused severe inflammation and scarring. So whilst not common in females it is a tricky procedure in both sexes to put right. I have been made incontinent since I was 34, that ended my sex life....for me it was so embarrassing I couldn't be intimate. I hope this gives you a little peace in your life and I pray you have not got piles of incontinence pads like me. Best wishes

    • Brosarah
      Brosarah Lexieloo

      Posted

      Hi Lexieloo, I'm sorry to hear about your story. I am scared that this will be my future too, I have disregarded my urologists recommendation to have surgery because I need to know where my problem started. Can I ask what your immune disorder is this may be something I can look into, since my mother and daughter have immune diseases.

    • Lexieloo
      Lexieloo Brosarah

      Posted

      Hi love

      Let's hope this is third time lucky. My responses keep deleting 😡. I have a really complex health pattern, but am happy to tell you the two issues they believe caused not just kidney problems - I have heart failure also - but caused the need for the urethra being widened. I have Lupus, Rheumatoid arthritis, but I have gout and it helped cause stones that almost killed me. During this stones issue the Dr decided on an exploratory....during this she opened the urethra without my knowledge....boy I knew when I woke. I have had kidney issues most of my life and during childhood was diagnosed with a deformity, a baby sized kidney, works intermittently. Be careful. Try remembering you can find out what the cause of origin is before, during and after the procedure...don't gamble with your life. I often wonder if my deformity is something to do with why I am in the state I'm in. I hope this has helped you Brosarah and I am here for you any time you want to chat. Best wishes, your friend Lexie

    • Lexieloo
      Lexieloo

      Posted

      And one other thought.....I haven't heard of anyone being in my position before....now I don't know statistically whether this incontinence is definitely caused by the bouginage. All I know is women are not as prone to needing this surgery. Just my luck, right??

      I am living on antibiotics now, so it didn't work for me, but I repeat I am mutated....no jokes. I would love to know other women's  experiences and does it create incontinence in men??

    • delores01834
      delores01834 Lexieloo

      Posted

      Wow, sorry to hear this Lexieloo.  As I read your comment I almost forgot it was you writing because my story sounds very close to you I the Incontinent part.  My situation differs whereas the doctor said I had a urethral stricture but I did not.  Did you get your treatment in the States or other?  I had my surgery in the states. Are we allowed to give emails address to each other?

       

  • susan13267
    susan13267 s

    Posted

    Hi I'm 65 yrs old and had a kidney stone removed by an instrument thru my urethra . I was 18 . Since then I've motive dribbling of urine after I have urinated. So I would wear pads. After 47 years I found a solution. After urinating as much as I can, I bend forward from the waist and continue to urinate till complete. No more urine on my underpants. And I don't get up as much during the night. This works for me so far.

  • robin00297
    robin00297 s

    Posted

    I'm 43 and I was born with urethra stricture. Started seeing Urologist at age five. I remember the horrible painful tests, the annual hospital stays (dilation?) from ages 5-11 (and waking up to find a catheter 4/6 times). I guess I tried to forget about it because yesterday was the first time I heard the actual diagnosis- I'm in middle of passing 4mm kidney stone and asked my mom what was wrong with me when I was little and she had thought I already knew. Now I know why the few times I've gotten catheter it's so painful. I did see dr at age 21 for UTIs who did cystoscopy (?- camera) and told me I had scar tissue along urethra. So here I am, no urologist to go to for advice, on day 8 of passing 4mm stone. It was in distal 3rd of ureter 3 days ago so I guess I'll find out soon if it's getting thru. I hate this.

  • sarafurn
    sarafurn s

    Posted

    Hi everyone,

    so so glad I found you . I have had a urethral stricture for about five years I am a 45 year old woman. It was discovered when I taken in to A and E in retention, though in hindsight I think the emergency catherisation done by a nurse which took an hour actually caused the damage. I've had three dilutions the first worked well for about six months and I was told to self cath and to arrange a session with the nurse, I didn't Andrew within six months I was in retention etc. The next two dilutions did not work. I have self catching as my only way of urination for over three years now a single I cannot urinate at all. I was referred to Tamsin greenwell in London and to cut a long story short I am have urthethroplasty on weds 5 July at the Westmorland st hospital. I will keep you posted please message me or post if I can share any info.

    sarah 

    • deb2722
      deb2722 sarafurn

      Posted

      Good luck, I hope it all goes well for you - self catheterisation is horrible.  (My post above was probably deleted as I was trying to share a catheter type I found that made things a bit easier, but I think posting websites is against the rules).  Let us know how you get on.
    • jodi13568
      jodi13568 sarafurn

      Posted

      hi sarafurn,

      I was a bit younger than you when my issues got serious

      and what a struggle it was to get diagnosed and treated.

      I was on my third urologist before I was finally diagnosed

      with a stricture and then got a dilation in the O.R. This

      urologist had no plan of treatment other than self cath.

      After much research, a change in urologist and 3 more dilations,

      I underwent a uretheroplasty with tissue from my cheek at age 53.

      Two years later it is still holding up with no problems. I hope

      your procedure and recovery is going well.

    • sarafurn
      sarafurn jodi13568

      Posted

      Hi Jodi

      So glad to hear it worked for you.

      How long was your recovery ?

      How was the cheek graft recovery?

      Can you urinate normally?

      Would be so grateful for any info on theses points and any other PST op stuff you feel relevant

      Thankyou and warm wishes

      Sarah

    • jodi13568
      jodi13568 sarafurn

      Posted

      Hi Sarah,

      It was around 3-4 weeks for recovery and once the foley came out, was able to urination normally.  Actually the cheek graft left a more lasting issue as there is a scar and a bit of tightness on that side of my mouth still today.  I was told to do cheek "streching" during the surgery and I used a special persription "mouthwash" that helped speed recovery and deal with pain. 

      Still can't whistle as well as I used to but well worth the trade off.  I had a couple of post op visits with my uroliogist but no follow up visits in the pas year and a half.  I hope your recover and results go well.  Let me know if you have any other questions.

      Jodi

       

    • jodi13568
      jodi13568

      Posted

      I meant cheek stretching after the surgery.  smile
    • sarafurn
      sarafurn jodi13568

      Posted

      Hi Jodi,

      thanks forthe infor so good to tak as its as it's so rare to find women who have had this surgery. Can I ask how old you are and what your condition was like before surgery. I had been sel cath as my so,e means of urinating i.e. Around 15 times a day for three years prior. I went into urinary retention five years ago had two dilations which didn't work. Die greenwell do your surgery.? Any ideas what caused your condition ? 

      Warm regards

      sarah 

    • jodi13568
      jodi13568 sarafurn

      Posted

      Hello Sarah,

      Sorry for the delayed response but your email went to a SPAM folder and I just saw it.  It sounds like your situation was worse than mine. After 3 dialations, I would do periodic self cath of once a day or less frequently.  But the stricture would always come back, not allowing the bladder to empty which made me constantly uncomfortable.

      The condition started when I was in my 30s and it took awhile to get bad enough that I needed the dialations which started around age 48.  Unable to determine what caused it initially but it may have been caused  by a bad uninary tract infection I had in high school.

      I was 53 when I got the uretheoplasty done.  It took some research to find someone that actually had a way to treat it surgically.  The previous urologists did not seem to have any ideas other than self cath.  I'm in the states and had it done at University of Michigan hospitals which was the closest provider that had done this type of surgery.

      I hope you are doing well and get a successful resuIt.  I know what an ordeal it was for me and wanted to reach out to people going through something similar.

      Best Regards,

      Jodi

    • yvette77680
      yvette77680 sarafurn

      Posted

      Hi. I too have a stricture. One day 8 years ago I just "could not go"....total blockage and I freaked out. A few trips to the ER and my uro and I found I had a stricture. I to have had dialation with no real success. About three years ago I once again made my way to the ER was dialaited and shown how to self cath so the stricture stays open. I can do it with my eyes shut or no mirror. Every once in a while I can't get the cath in and have slow urine flow but for the most part I have been successful. That is until recently. I once again find myself totally blocked. Literally from one day to the next and I have no idea why. I no longer have a uro and now have HMO and need to waot for referals. To go through this all over again with a doctor that has no idea what to do is not something I am looking forward to. Any ideas as to why all of a sudden I have blockage and am unable to get the cath in?

    • deb2722
      deb2722 yvette77680

      Posted

      I have a recurring stricture.  I self cath as well, but the stricture does come back quite suddenly (although sometimes I know I leave it too long between self catheterising) and then I have to have another dilation etc..
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