Unusual advice from new urologist--help! (Possible TMI)

[Stella1609]

I moved a few years ago and to avoid seeing a new urologist I have just been seeing my old one when I am home visiting. I finally decided to take the plunge after a bad UTI in June. My first appointment was today, and she seems to think I have PFD. I have not been diagnosed with this before, but don't necessarily disagree. However, the instructions she gave me seemed a little out there--basically she said I should use no cleansing products on my vaginal area (or anything down there really), I should stop shaving (!), and I should only use gentle detergents. The last one I get, but to use no cleansing products AT ALL seems extreme--I wouldn't feel clean. I don't do anything internal like douching, just normal external washing. The boyfriend (of five years) also reacted really strongly to the not shaving, and I don't understand how that could relate to PFD (not to mention I had these symptoms when I didn't shave as well, not to mention when I was a child and HAD no pubic hair). I may be a little out of the loop, but are these normal things to suggest? A Google search pulled up nothing. And how do I go about telling her I'm willing to try the other things she has suggested (she's scheduled me for yet another ultrasound and mentioned physical therapy), but that these things just won't work for me? I don't want to try for another urologist at this point as this is my third one and I've had not fabulous experiences with 2 out of 3 so it doesn't seem like the odds are in my favor if I roll the dice again. Thanks so much for any advice you can offer.

[kdream]

I also had similar problems right after my first uti. i have pelvic floor dysfunction (pfd) and was diagnosed first by a urologist, then told by my physical therapist that it's a pretty severe case. my urologist didn't tell me about the shaving thing, but she did mention not using scented soaps,douching, using dryer sheets, etc. i think this is more for the purpose of not contracting a yeast infection. my phys therapist told me that many women develop pfd after a bad uti or yeast infection, so i would think getting another yeast infection or uti would make your pfd much worse because of the pain. it's a vicious cylcle. any pain down there (or anywhere!) makes your pelvic muscles tighten. it's possible she mentioned not shaving just because the pubic hair somewhat protects your vagina and might keep unwanted bacteria out. ive also noticed that since my pfd began, my vulva and the whole outer vaginal area is much more sensitive than before to itching and pain. the urologist said this is because when there is pain down there, the nerve endings become extremely sensitive so EVERYTHING can cause irritation. for this reason i shave daily down there because when the hair grow back it pulls on my underwear and hurts more! maybe she mentioned it just to avoid possible razor burn and cause more pain? as for the phys therapy, mine has helped immensely since i began 2 months ago. it still is extremely painful at times (especially during my period) but it is def. something you need to do for pfd. baths once or twice a day also help to relax the muscles, as mine are WAY too tight. (pfd can also be loose muscles, but this usually causes symptoms more along the lines of incontinence or sliight leaking, and is often seen in women who have had children).

[kdream]

also if you just have pfd and not IC, you probably won't have much interaction with your urologist after that appt since they usually leave pfd healing up the the phys therapist (unless your symptoms do not improve at all after 5 or 6 sessions). ive only seen my urologist twice since being diagnosed with pfd.

[Stella1609]

Thanks for the information! I guess it just seemed extremely weird because I have no irritation/discomfort with the external vulvar region. I'm not especially sensitive there or anything. All of my pain is internal, especially in the area of the urethra with aching and occasional sharp pains in my lower abdomen. I haven't had a yeast infection for several years (10+). I have bladder tenderness in addition to tenderness in my pelvic floor muscles, plus constant microblood in my urine, so I think it's extremely unlikely that I have just PFD and not IC (especially since I've had the IC symptoms as long as I can remember, at least since I was five). She said the IC could cause PFD because of discomfort (like you said). I'm also helped tremendously by amitriptyline, which I don't *think* would help for PFD (again, I could be a little out of date with my info as I've just been maintaining for a couple of years).

It doesn't sound like yours suggested no soaps at all, just gentle soaps? I already use Dove sensitive skin . . . I just don't know how you'd go about using nothing anywhere down there. I do appreciate the input about things getting itchy/irritated when the hair was growing back--I remember that from when I stopped for about a year a while ago. Maybe if I tell her I was having discomfort from trying to grow it out it would be less awkward than if I just say I'm not trying that? Thank you for the input!

[ICNDonna]

I do use soap in my crotch when I shower, but not directly on the urethra --- it's just too irritating --- and our bodies are designed to cleanse that area unless there's something like an infection going on. I'm one of those rare people who can't use regular soaps --- if I'm feeling any irritation at all, I use Neutrogena.

I honestly don't know about the shaving, but I don't see how it could effect IC?

Donna

[Stella1609]

Thanks for the input, Donna. I've had urethral burning for 22+ years so I know to use soap on the external labia only. I don't "get in there" for lack of a better description. I'm just feeling some frustration because this is maybe the sixth doctor that's tried to treat me since I was a child and they all think they have THE ANSWER to make it go away. I just want to tell them to stop trying to fix it because it's not going to work. I maintain really well on amitriptyline, and I just wanted a doc who would renew my prescription and send me on my way.

[earthlady]

it does sound odd that the dr.would tell you not to shave but when you think about it the hair growth in that area is obviously there for a reason or we wouldn't have it. Maybe she feels that it is a protectant against external irritation or bacteria. I never use soap in that area and find warm water in a bath or shower seems to be fine for cleansing. I had a pretty bad case of VV years ago and stopped any and all soaps in that area and used baking soda only when washing my underwear. I guess I got paranoid about it coming back but it seemed to have helped.