April 18, 2021 at 2:31 am #41535RosamundParticipant
I have a rare condition called Fowler’s syndrome. It’s a urinary problem where I’m unable to empty my bladder, have difficulty starting urination, and urinate frequently. Years ago I saw 2 urologists and a physical therapist. I tried medications, an over the counter supplement for urinary health, and drank cranberry juice. I was told that all that could be done would be for me to be studied and that might make my condition worse. People are known to get infections from using catheters.
Over the years it’s just been something I’ve learned to put up with. It’s becoming more difficult, especially at night when I’m trying to get to sleep. I don’t know if my Fowler’s syndrome is getting even worse or it’s a UTI in addition to Fowler’s. I’ve been researching and learned that my options are catheters or if a doctor thinks it’s worth trying or it’s bad enough I can do sacral neuromodulation (SNM) therapy. SNM would mean that a device would be implanted in me. It may take more than one surgery and it doesn’t work for everyone. If I have to use a catheter, my body might not let a medical professional put it in, since it’s close to my vagina which would bring up bad memories of my challenging and painful pap smears. Does anyone have any experience with catheters or have any ideas for how to cope?April 28, 2021 at 10:38 pm #41789recessivegenequeenParticipant
Hi Rosamund – welcome to the forums! Unfortunately I don’t have experience with catheters but I’m so sorry about the pain and discomfort you’ve had, it sounds miserable. There are some excellent doctors in these forums that might be able to help on those particular questions.
As to your issues in general with past painful pap smears, do you have a doctor/gynecologist you trust to work with? I’ve found that with my vaginal pain issues, having a supportive and understanding set of medical professionals was the thing that finally helped me (and that people who DIDN’T understand my pain made my shame and feelings of differentness even worse). If you don’t have a specialist you like, HOWEVER you decide to tackle this, I recommend calling around and seeing if you can find a doctor or gynecologist who is familiar with vaginismus, vulvodynia, or female sexual pain in general. Even if you aren’t suffering from one of these exact issues, a practitioner who is familiar with them will likely be more sympathetic and patient and will care more about your experience if you do need a catheter or other device implanted.August 26, 2021 at 1:24 pm #47006newbieParticipant
Hi Rosamund, I have vaginismus and also a condition that means I can’t empty my bladder so I use intermittent, disposable catheters called Conveen Speedicath every time I need to urinate. It does mean I’m more prone to UTIs after sex (not that that happens often with my vaginismus!) or during my period but I would really recommend them as an option – I’ve been using them since I was 14 and they’re super discreet, just look like a lipstick. Happy to chat more if you like – it might be worth a thought before you think about surgery! xNovember 10, 2021 at 10:43 pm #48896RosamundParticipant
I’ve been seeing another urologist since I have to get up multiple times from bed to urinate. So far no talk of a catheter. I saw a doctor because I was bleeding between periods. She was unable to do a pelvic exam and pap smear for me. I was in too much pain. She referred me to a gynecologist. She couldn’t do exam or smear either. I was officially told I had vaginismus, something I’ve suspected for years. She referred me to a physical therapist to work on my pelvic floor muscles. The gynecologist said I can discuss other options for what to do with vaginismus if the physical therapy doesn’t work.November 15, 2021 at 12:23 am #48920recessivegenequeenParticipant
Rosamund, I hope that the work with the physical therapist proves to be fruitful treatment! Let us know how it goes and if any questions come up along the way!
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