urethral stricture

Posted , 32 users are following.

s
1

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.

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  • caz2
    1

    Posted

    Hi S

    I'm replying to your question as I am a woman of 51 and have urethral stricture too, which has been going on since September.

    As you say it is very rare in women, my GP and urologist are at a loss to know why it has happened to me, as I have been perfectly healthy all my life.

    They have tried the flexi and rigid cystoscopies but these were un sucessful. I am now waiting for an x ray to find out how how long the stricture is, and then they will decide what to do next.

    I would be interested to know your experiences so far.

  • sushi
    1

    Posted

    Hi ladies , I would like to share my painful experience with both of you .

    I have difficult urination with lots of pain and burning, frequency and urgency , it's a real torture ........

    I am a 40 year old female , suffering from urethral stricture since I was 20, I have done in my life 11 urethral cystoscope so far , with different doctors and all of them have found that I have a very tight urethra and they have dilated it everytime I did a cystoscope .But the dilatation didn't really help or did give me little relief.and after a few month the urethra gets tight again.It seems it's a big problem that has no solution.

    But I didn't give up .....I am going for a urethral dilatation and cystoscope tomorrow with a new doctor.Wish me luck .....

    May all your pain and discomfort go away as soon as possible...

  • Guest
    M

    Posted

    Hi

    I too have suffered from this condition since the age of 17, i am now 30. I have spent many a night waking up to go to the loo only to find hardly anything comes out and that my urethra contracts again and again making me feel like i have to go again. I have spent years sufferring this monthly and hours in the bath or on the loo as it is that uncomfortable. I get little sleep when its at its worst and i have found it lasts anything from 1 day to 1 month. No amount of antibiotics, cystitis relief, water or cranberry juice helps this at all. I am depressed and have now undergone 3 urethral stretches but once again am burdened (for the last 14 days) with this ongoing problem. I hate it. I cant leave the house and i am constantly in the loo...i may as well just stay there!

    I am waiting for another stretch at the moment but unfortunately this seems to be something i will have to live with. I did however read about a more permanent operation that involves putting two wires into the urethra to ensure the tighteneing cannot recurr so i am going to query that with my surgeon.

    I feel for anyone who suffers this condition as it is generally very life consuming. I just hope those who undergo the operation find that it does provide some sort of relief. Good luck.

    Emma

  • Posted

    Useful reading:

    Urethral Strictures

    Urethral stricture: Urethrotomy vs. definitive repair

    Urethroplasty's high success rates make it the preferred choice over temporary measures

    Repeat Urethrotomy and Dilation for Urethral Stricture Disease is neither Clinically Effective Nor Cost-Effective

    If you ask your doctor about alternatives to another dilatation - which is evidently not curing you - you may be lucky and get objective information. I've had to deal with a succession of doctors dedicated to mis-selling ineffective repeat urethrotomies.

    If you do opt for urethroplasty, try to find someone very experienced in it.

    \"Three surgeons perform half the urethroplasties in the UK each year.\"

    • Posted

      I was misdiagnois with ureyhral syricyure given a surgery for it that left me totally incontinent. There had to be more open discussions about Urethral Stricture positive and negative.  This is a very serious discussion. There is information that is not being told in regard to urethral stricture that can damage many women if tgey dont truly have the condition. Pls respond back to me with your information.

  • Posted

    See also:

    [quote:c7a8c412d1][i:c7a8c412d1]\"Review of the literature reveals little evidence to prove the efficacy of urethral dilatation for adult women with various lower urinary tract complaints.\"[/i:c7a8c412d1]

    [b:c7a8c412d1]Urethral dilatation in women: urologists’ practice patterns in the UK[/b:c7a8c412d1]

    M MASARANI, RG WILLIS

    Department of Urology, Royal Cornwall Hospital, Truro, Cornwall, UK

    Ann R Coll Surg Engl 2006; 88: 496–498

    [/quote:c7a8c412d1]

  • Guest
    M

    Posted

    Just found out today my close female friend, 46 years old, has a congenital kink in her ureter. This was revealed through a cat scan. She will be seeing a urologist next. From reading online, i see it is rare in women. At this point not sure what to make of it all. It's good to read another female has a ureter problem.
  • Loopy369
    1

    Posted

    I thought for the benefit of the few \"rare\" female cases I'd add my own experience here and hopefully can follow up for any other poor ladies that find their way here.

    My stricture (still waiting results of most recent CT scan for confirmation it's not more cancer) is thought to be the result of radiation I had to shrink my rectal and lymph tumours in 2007 (aged 36) added to the menopause and oestrogen levels dropping - I'm now on HRT.

    Things got difficult as soon as radiation started - I had five weeks of it and my flow was reduced after a few days but noone seemed unduly concerned - since the cancer and my recovery were more important at the time. Gradually things have worsened a few months ago and finally having seen a urologist am to have my first dilation. He seems to think this could last for up to 2 years and am expected to have to self catheterise to prevent early recurrence.

    I suffered repeat UTIs as a child and throughout adulthood and have scarring on my kidneys already as a result so really spending a lot of time and effort squeezing every drop I can out when I go!

    Hopefully I shall post in a few weeks time with some positive results but would love to hear from anyone else who has a radiation caused stricture.

    • Posted

      I don't but my prayers go out to you.  I do self catherize daily, but not what your asking.  Hope you get some relief soon.

       

  • bernp
    1

    Posted

    I have just found this forum after searching the internet as there is so little on female urethral stricture. My story sounds very similar to the post above in that I believe my stricture is a a result of pelvic radiation used to treat anal cancer tumour just under 3 years ago, from April 2010 to June 2010. I am now a 50 year old and didn't have a day of trouble prior to my treatment. It took a long time for the doctors to take the problem seriously as they too were more concerned about me surviving cancer. My issues started 8 months after I finished treatment when I noticed a change in flow and frequency to toilet. I finally had a cystoscopy and

    dilation in November 2012 and the doctor said there was only a pinprick hole and had only seen one worse. The dilation worked temporarily and he suggested self catheterisation every second day. This has been successful to a point but I know in the short time it is closing up again and wonder what do I do long term? I had researched reconstruction surgery but he told me due to my complex issues this would not be an option for me. I feel at such a loss as there is so little around and no-one to discuss this with. I have other health issues to deal with as a result of the pelvic radiation so do not wish to invest in yet another doctor unless I understand the outcome will be better. I would be very interested to hear how loopy369 has got on with her issues and whether the self catheterisateon worked.

  • bethanyn
    1

    Posted

    I am soooo happy to have found this discussion board. I have been searching the internet for information for several months now, and only today just found something useful. Female stricture's are so rare it's as if this condition doesn't exist.

    I have had a stricture for most of my life, but never knew because the effects were relatively minor. It was basically discomfort when I held my urine. A little over a year ago I was blindsided by intense kidney pain, and thus begun my journey into figuring out what was wrong with me. I saw my family doctor for what I thought was an infection, but the test came back negative.

    After a week of recurring doctor appointments I took it upon myself to see a urologist. In the last year I have had 4 (painful) diagnostic procedures including one that required sedation. My doctor was unable to diagnose a problem. He then decided to install a stent in my ureter that stretched from my kidney to my bladder. The thought would be more insight into my pain, and possible relief for me. At the time of this procedure my doctor was FINALLY able to see my stricture for the first time. He was not able to see it previously, because it is located at the bottom of my ureter right up against my bladder. This is a very uncommon location for a stricture. My stent was in for 2 weeks, and then removed. I had 9 blissful pain free days, and I was running to the restroom every 30 minutes. About a month ago I had another stent installed with the hopes that I would see more long term benefits from my ureter being "stretched" on 2 separate occasions. Unfortunately I had the same short term reprieve.

    I met with my urologist a few days ago, and he feels the best course of action is ureter reconstruction. This requires at least an overnight hospital stay, and several weeks off work, but I am desperate for relief. I can hardly sleep at night, and am an emotional wreck from the pain, and always having to be near a restroom.

    My heart goes out to the rest of you. I have only been dealing with this level of pain (worse than childbirth) for the last year and cannot imagine dealing with a stricture for as long as some of you.

    Perhaps reconstruction is an option for some of you. I am hoping that it is for me.

    • Posted

      Hi, I am a female, and I had reconstruction surgery on my bladder. I don't really know what to say to you I want to say a lot but I have to be careful.  I am not a Dr. nor a therapist.  I am a WOMEN looking for people like you and myself who are living with Bladder disorders that I can share my experience with.  My experience Bethanyn was not a good one until recently.  The doctors that did my reconstructive surgery were experience in dealing with Women and I am greatful to God and to them.  Being a women with any type of Bladder Disorder is difficult.  I hope that you will be able to do your research and make a decision that is right for you.  I know it's hard, because you state that you are in pain so I hear you, you sound like you just want it all to be done, you want relief.  Please let your family and love one reach out to the doctotrs to help you, and also to make certain that you're getting all the right treatment for you.  I will keep you in my prayers and hope all goes well with you.

       

  • betsy4
    1

    Posted

    I am a 52 year old woman who has had urethral stricture for years though only diagnosed in the past year. I won't go into detail about the trips to the urologists , but suffice to say I felt they only wanted to use all their high tech equipment and not really find a solution to the problems I was having.

    When I would get infections, my first symptoms would be that I could not empty, ( I guess the inflamation from the infection would be just enough to completely close my already narrow opening) so I would go to the doctor or e.r., they would cath me, I would feel better, they would give me antibiotics and everything would be better, although I still had a very low flow, that I just kinda lived with.

    A little over a year ago it got to the point though where I would only urinate very small amounts, and would have to use the bathroom every 15- 30 minutes or so. I did not have an infection. I put up with it way too long, not wanting to be put through all the painful tests. Finally I went to a urologist, feeling I was just to full to carry on. They cathed me and got 1900 ML from me! I was very lucky it didn't back up into my kidneys!

    Fast forward a year, and my treatment is to cath myself once a week, or whenever I feel like I'm not empty. At first I had to do it 3 times a day. And my bladder did get over extended from having it so full for so long. But it is relatively normal now, although I do have to double or triple void most of the time. This cathing not only brings immediate relief if you are unable to go, for me, it helps to widen the uretha a little bit and makes, subsequent urination a little freer.

    I would never go under any operation for this as it seems like that would just cause more scarring! With my handy dandy caths nearby I don't worry about anything. Even if I get an infection and swell up, I know I can always empty by cathing myself.

    Of course there is the problem of cathing could lead to infection, but not cathing can also lead to infection, but thank god we live in a time where there are antibiotics!

    Cathing isn't as awful as it sounds. There is no bag. Just a little cath you insert into your uretha (using a mirror or a husband), the pee comes out a little tube and into the toilet or a measuring utensil if you want to measure it. It does hurt a little going in (for those of us with strictures anyway). I use lots of lube and tell myself it will be over quick. When I was still really full and not emptying well by myself my husband would do it for me a lot of the times, mostly because I was just feeling fragile and couldn't inflict the pain on myself. Now, while it is surely unpleasant, it's pretty easy, it's quick and I'm very grateful for those little tubes and whoever invented them!

  • bernp
    1

    Posted

    Welcome Betsy I felt the need to post to follow up on my post early in the year. I was initially daunted by the idea of catheterising every second day and whether it would be a solution. In addition my husband and I had planned a 7 week trip to Europe as our fourth child had just completed school. I live in Australia. So the idea of doing this on our travels was a bit daunting and felt like a 'pain'. I appreciate your positiveness to the task Betsy and I too have found it much easier to manage than I anticipated. I have the system sorted at home and the catheterising while travelling proved to be easier than I thought. At home I catheterise on the toilet using a large magnifying mirror normally intended for make up for people over a certain age. It has been a great mirror for this purpose and while it is quite large I couldn't imagine not taking it overseas. I have tried

    using a smaller mirror but I can only do it easily with the mirror sitting between my legs leaning on the toilet seat. I too have to make sure I use plenty of lube and don't rush hard with a full bladder and post menopausal this can be difficult but if I rush and don't use enough lube than it can traumatise the area

    and the tissue is more delicate due to damage from the radiation. My biggest concern with travelling was being in different bathrooms and toilets regularly and ensure a level of cleanliness. At home I have a little sink near the toilet that I use to put the catheter until ready for use. I used disposable nappy changing

    mats while away to put all the things I needed to use and placed this on the ground in easy reach from the toilet. I used disposable bacterial wipes to clean myself and the toilet and area around toilet if needed.We did stay in nice accommodation so the toilets where generally clean. I took 2 lots of antibiotics just in case and lots of supplies of catheters, lube, wipes and mats and all went well with no infections. On the whole the second day catheterising is working well and keeping me open enough. My flow is still incredibly slow and I do go to the toilet often, it can be frustrating but at least I am able to go. Thanks everyone for your stories.

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