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.0 Report this reply to caz2
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...0 Report this reply to sushi
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.
Emma0 Report this reply to Guest
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.\"0 Report this reply to zug3ppn02
[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
[url]http://www.pubmedcentral.nih.gov/picrender.fcgi?tool=pmcentrez&artid=1964673&blobtype=pdf[/url][/quote:c7a8c412d1]0 Report this reply to medexperience
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.0 Report this reply to Guest
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.0 Report this reply to Loopy369
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.0 Report this reply to bernp
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.0 Report this reply to bethanyn
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!0 Report this reply to betsy4
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.0 Report this reply to bernp
I am a 48 yr. old female who has suffered with a stricture for almost 20 years. After many dilations I have an almost normal flow which has been fine for a long time but am driven to distraction by the pain I have when urinating. There has been no explanation given to me for the cause of this condition. Does the catheterization help with the pain or only the flow? I am afraid to catheterize because I am afraid of the pain. Does anyone have just the pain? Has anyone ever used a medication that helped with the pain and discomfort? I have been told by my urologist that the reconstructive procedure is iffy and can cause permanent damage to the bladder and create permanent incontinence. The feedback here is very helpful. Thank you.0 Report this reply to jill115
Hi Bemp and Jill, It's so nice to have someone to talk about this with! Bemp, I'm so glad you've found a little relief at least. I had the same hesitations cathing while traveling, but pack it all up like you did. In fact if I go anywhere even overnight, I pack the whole kit and kaboodle just in case. I wonder if your doc could do more dialations (it's just a tube they insert like a caterer and it's just as quick as catching. ) I had it done a couple of times when I was at the doctor's anyway, it helps increase flow temporarily. I've read about women being given self dilation tubes, that doesn't look any harder than cathing either. Maybe that would be useful in your case. For myself, if my stream was still as slow as yours I'd be cathing a few times a day. My doctor gets concerned about the amount of fluid left in the bladder - better to get it out all at once, plus then you don't have to go a million times a day.
Jill, I don't have too much pain with urination. A little burning , especially after cathing, maybe, but not what you're describing. That must be pretty awful, cuz we all gotta pee! I don't think cathing would help with the pain and it does hurt a little. Perhaps you could try it and if it hurt less than urinating , maybe you could empty that way instead of going through the pain of urination. But of course, I don't know, I'm no doctor. I feel for you though.0 Report this reply to betsy4
Thanks Betsy yes I agree it's so good to have someone to talk to about this. Some good thoughts I do get
scared re too many dilatations as I already have scar tissue from the radiation and worry about extra
scarring. It is all a lot of trialling.
Jill, I don't get pain generally or when I cath either. There has been an odd occasion when I haven't used
enough lube and it was painful and I broke a bit of skin.
However when I first had the uro-dynamic studies done 2 years ago when they were first investigating the issues post radiation the nurse cath me as part of seeing how much urine was left in my bladder and the pain was terrible and intense and I cried with the pain. I now think that first catheterisation broke through
the scar tissue formed from the radiation. When the doctor first suggested self cath I was very anxious
due to this experience and the pain. The nurse did it in the office and there was no pain so that alleviated my fear. I started self cath 6 weeks after the dilatation done under anaesthetic so obviously the urethra
was open enough and now it's about keeping it open.
I have never taken any medication for my bladder/urethra issues. I cannot consider any reconstruction
due to my complex issues from the cancer.
All the best with finding a workable solution Jill.0 Report this reply to bernp
I can't believe I found women with such similar lives as mine!! I'm so relieved! My retention issue, turns out after three urologist and an oncologist's opinions, to be from pelvic radiation treatment I endured 10 years ago.
About 7 or 8 months ago I noticed, as you mentioned betsy4, that I was having to urinate way too often and was up in the night at least 5 or 6 times. My GP wasn't concerned but at one of my visits this May it was discovered I was extremely anemic and had me hospitalized.
Having a history of ovarian cancer 10 years ago, my oncologist was informed of my hospital stay and suggested a CT scan which found a cancer recurrence BUT also a very overextended bladder.
My oncologist thought it was necessary to insert a foley catheter right there in his office a week later, and like you bernp, I was in pain, crying, the works. I don't know if it was tissue blocking or a stricture but whatever it HURT!
Well after a few mistakes by doctors (leaving the foley in for a week, taking it out with little or no advise with me back in the hospital in June with kidney pain and vomiting for one) I have been self-cathing three times a day. This was not an acceptable answer to me so I saw two other doctors who gave me Rxs and said to see them again in three months. Well the drugs didn't do anything and I wasn't going to wait three months to discuss other options. So I scheduled appointments, 4 months out sometimes, and kept them in my back pocket in case. Glad I did.The doctor I saw in December's at least paying attention.
Yesterday I had a cystoscopy and was "stretched open." I came home expecting miracles and found that after calling the nurse today that I have to wait two or three days for the swelling to go down before I'll see any difference. After reading about these repeat procedures, I'm less excited about this but maybe, just maybe I'll finally be lucky.
Believe it or not I had the recurrence of cancer and lung surgery and the only thing I kept hounding the doctors about was this urinary issue. It is a quality of life issue. Some of you are more skilled than I am apparently but I haven't mastered this enough to feel comfortable in a public bathroom. I tried to do it over the toilet but sometimes I'd place it where I thought it should be but it wouldn't go all the way in and I didn't want to try poking somewhere else, so back to the floor, light and mirror trick. You can't do that in a restroom stalls.
I see others talking about lube and infections and I wanted to share what was recommended to me. It was a self-lubricating catheter that's supposed to cause less damage to the lining therefore cutting down on infections. It worked better, i still got a few infections but I was getting them constantly before. This catheter is made by Rusch "Female FloCath Quick Kit" (contains the catheter, a povidone-iodine prep pad for cleaning among other things). I'm sure other companies make it but I got this through 180 medical in the US. I hope it's available for you.
I'm so glad to find you all because I don't feel like talking about this to other people usually because I know they can't understand this, who would - I don't really understand it either but at least I've found someone who can relate to the experiences.0 Report this reply to chrismalossi
My story is similar to most. Diagnosed with Colon/Rectal cancer Feb 2013. Had Surgery, Chemo and 5 weeks of Radiation. Shortly after starting Radiation problems with urinating began. Its been a year now and the pain is excruciating. Burning, stinging, feeling bloating, just out right, miserable. Currently seeing the 3rd Urologist. He has suggested self-cathing 4 X's per day, but I can't. It is so painful, I feel like I'm gong to pass-out. Don't have UI infections. Not sure where to go from here. Doctor tells me if I don't empty my bladder I could end up with Renal Failure and on Dialysis. Very scared and frustrated.
On the other hand, very grateful Cancer was caught in time, but fear the problems with this issue will be a life-time of ...........0 Report this reply to wendi34181
My story is very similar to many of yours. Was diagnosed with cervical cancer in 200 and had pelvic
radiation. I've had intermittent problems with strictures since then.
For several years my flow would gradually decrease until I would just be dribbling. One morning after that stage was reached, I'd wake with a very full bladder and the increased pressure would break through the
stricture. It would be painful and I'd spot blood for a few days but my flow would return to normal.
Gradually the scar tissue would build back up and the cycle repeated.
The strictures have now become so bad as to require dilation and wearing a catheter for two weeks after.This treatment will work for a few months and then I start having flow problems again and require dilation again.
I don't think self cathing is going to be an option for me. I work as a nurse and my work barely allows me enough time to urinate naturally. Having to take time out to catheterize is not something I see happening.
Am going to make an see the urologist next week and discuss possible options. Hopefully something
short of surgery can be done.0 Report this reply to ArkieRN
Welcome to the discussion ladies. Chris, I love the idea of a self lubricating cath. I am going to look into that!
Catching was painful for me at first, I feel like when I am doing it more often, the opening is actually bigger and it is both easier to pee and to cath. I bought a smaller one than the dr. Recommended, and boy did that ever make a big difference. Smaller cath, lots of lube, could help.
I also have never been able to do it without a mirror. But I place the mirror on the edge of the toilet, so it could be done in a public restroom. In some cases cathing is much quicker than peeing when all you can to is trickle , trickle trickle.
It's no fun ladies, but I sure am glad to have found you guys to comiserate with! Also it beets the alternative of not peeing.0 Report this reply to betsy4
I'm so glad to see responses again. I thought I got onboard too late and everybody left. Wendi & Arkie - I'm so sorry to hear you have so much pain involved. I really hope you find an option Wendi because you don't want to harm your kidneys and end up in the hospital. Arkie, I'm so with you on trying to live a normal life and cathing. Unfortunately/fortunately, I became unemployed when I ended up in the hospital this summer, so I've been struggling with this at home. Hard enough - and work too - what??? Please push your docs for help. Most of them seem to think self-cathing IS the answer.
As far as pain, I've been lucky so far except during the first time they put a foley in me. Speaking of pain, the "stretching" didn't work for me, not even for a short time. I did get a cystoscopy out of the deal and that at least identified the problem and luckily there isn't anything life-threatening. The damage was most likely caused from the radiation but it didn't cause bleeding, etc. it damaged nerves.
I had a follow-up appt with the nurse practitioner of the doctor's office and was told that all the muscles, including the pelvic floor are way too tight. She, the nurse practitioner, recommended something that I'm very hopeful about - physical therapy that would include myofacial release therapy. I will be starting that in about 2 weeks. I'll keep you posted.
Betsy the self lubricating catheter was such a relief. As the woman on the phone at 180 Medical (the people who send me these catheters) explained that enough of the lubricant doesn't really stay on the catheter and these catheters end up scratching the skin, and gives bacteria a way in. The amount of infections has been reduced. I hope you can get them, I'm sure you'll be pleased.
This situation really is awful. My advice - keep pushing for an acceptable answer. I stay nice about it with the docs but I forge ahead and tell them we need to think of something else and they do. Hang in there!0 Report this reply to chrismalossi
Hi I am a female also in my early 50's. My reason for replying is to keep bladder awarenes open and not a hidden disease. Due to the embarrasment for so many women we are not getting all the information that we need in regard to urethral stricture. My story is not a nice one. I was told I had a urethral stricture also but I did not. I found out I did not have it after having a procedure called Internal Urethrotomy that I became totally loss of all my urine control in other words Totally Incontinent. I had more surgeries trying to correct the error instead of taking care of my true diagnois a overactive bladder. You see the problem is that we have to have doctors that are experience not in just their titles and the school they went to, don't get me wrong, of course that's great, they also have to be HONEST. Due to the fact the Urethral Stricture is RARE in Women we must have doctors who are certain without a shadow of doubt that we truly have it. How do you know you truly have this disorder, can you or I read the xrays....how many of us even question our doctors who we go to for care. There are women who they know do not have the disease but because of their severe symptoms they diagnois of with it. I eventually had to have reconstructive surgery and now self catherize for the rest of my life. Everybody situation is different, but let's don't critize each other, let
's hear each other's story. Yes, our medical can be very much different, but let's share, I wish there was a larger web site that I could have went on and found out some of the things I had to learn after this mistake was done one me. There has to be some type of system that warns us before doing this surgery and it lists other bladder conditions that we may have. I wish you the best, talk to your doctor, talk, talk, hopefully he or she will be honest with you. I now have a good urologist she is great I wish I had here before my medical misfortunate.
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