Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Hollis, Dr. (of The V Book) diagnosed and treated my LP without biopsy! So tell Dr. Kellogg to stick that in her pipe and smoke it. =) If symptoms are present, a biopsy is not necessarily needed and would often be a false negative anyway. Treatment for LP can vary because it affects the vagina and tends to be more serious. I use E (and T, before I was pregnant) and also used an inserted hydrocortisone and antibiotic vaginal creme to control the vaginal inflammation. Some with LP end up needing very heavy-duty immunosuppressants (like what transplant patients use) but hopefully it gets under control before that becomes necessary. All that said, some of the treatments are the same - steroids, hormones, etc. The steroids just didn't work for me and haven't for several other LP'ers that I know. Going gluten free has helped me ALOT as it has many other LP sufferers, it seems to be very successful for a lot of people on the LP group (which is quieter, and many have LP in other places, like scalp, gums, etc). Please email me if you want more info on the LP specifically. But I know Dr. 's practice regularly treats without biopsy if symptoms are clear, because the false negatives on the biopsies are so common. Melinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2008 Report Share Posted January 14, 2008 Melinda, Yes, i know (from your posts) about Dr. not insisting on a biopsy -- which is why i find 's stance on this so frustrating. Now, to be fair, i haven't contacted her yet, so i don't know if she'll make an exception. But between what she told me at my appointment and what someone else who sees her has posted, i'll be surprised if i can sway her. I wish i had questioned her more about the false negative issue/how to treat when i was there in August. She did tell me, though, that she uses a very good specialized lab that she has a lot of confidence in, having trained them herself, apparently in what to look for with LP/LS. Why there is such a difference in approach regarding biopsies between these two leading vulvar specialists is puzzling to me. Oh -- as far as gluten goes, i've been gluten-free for some time now, having tested positive with Enterolab. Hollis ===================== Date: 2008/01/14 Mon PM 05:20:22 CST To: VulvarDisorders Subject: Re: my biopsy dilemma Hollis, Dr. (of The V Book) diagnosed and treated my LP without biopsy! So tell Dr. Kellogg to stick that in her pipe and smoke it. =) If symptoms are present, a biopsy is not necessarily needed and would often be a false negative anyway. Treatment for LP can vary because it affects the vagina and tends to be more serious. I use E (and T, before I was pregnant) and also used an inserted hydrocortisone and antibiotic vaginal creme to control the vaginal inflammation. Some with LP end up needing very heavy-duty immunosuppressants (like what transplant patients use) but hopefully it gets under control before that becomes necessary. All that said, some of the treatments are the same - steroids, hormones, etc. The steroids just didn't work for me and haven't for several other LP'ers that I know. Going gluten free has helped me ALOT as it has many other LP sufferers, it seems to be very successful for a lot of people on the LP group (which is quieter, and many have LP in other places, like scalp, gums, etc). Please email me if you want more info on the LP specifically. But I know Dr. 's practice regularly treats without biopsy if symptoms are clear, because the false negatives on the biopsies are so common. Melinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 HI Melinda, I have terrible clitoral and vestibular pain and no one can tell me what is wrong. i am seeing a doctor at the Cleveland Clinic who wants to do a biopsy of the worst area but I haven't let her. I just tried compounded estridol but it was horrible after one application. She also gave me a perscription of anitriptalin cream but I haven't tried that yet. Any info would be greatly appreciated. I am thinking of trying the coconut oil. Is Dr. in NC? Thanks!! spanishmiss430 wrote: Hollis, Dr. (of The V Book) diagnosed and treated my LP without biopsy! So tell Dr. Kellogg to stick that in her pipe and smoke it. =) If symptoms are present, a biopsy is not necessarily needed and would often be a false negative anyway. Treatment for LP can vary because it affects the vagina and tends to be more serious. I use E (and T, before I was pregnant) and also used an inserted hydrocortisone and antibiotic vaginal creme to control the vaginal inflammation. Some with LP end up needing very heavy-duty immunosuppressants (like what transplant patients use) but hopefully it gets under control before that becomes necessary. All that said, some of the treatments are the same - steroids, hormones, etc. The steroids just didn't work for me and haven't for several other LP'ers that I know. Going gluten free has helped me ALOT as it has many other LP sufferers, it seems to be very successful for a lot of people on the LP group (which is quieter, and many have LP in other places, like scalp, gums, etc). Please email me if you want more info on the LP specifically. But I know Dr. 's practice regularly treats without biopsy if symptoms are clear, because the false negatives on the biopsies are so common. Melinda Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2008 Report Share Posted January 15, 2008 , If you have access to a good pelvic floor PT, I would go for a consultation. Even though I have LP, PT has helped me more than anything else. It might even be worth traveling to Chicago for a few sessions with Rhonda Kotarinos, the PT guru...Chelle did that and now her hubby does the PT at home for her and that works too. The estradiol helped me a lot too though, it's too bad even the compounded stuff bothered you. I have mine compounded in emu oil - it's just emu oil and the hormone, so nothing to irritate me. Dr. is outside of Boston. Sorry. =( Melinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 Hey Hollis, given your history, I can certainly understand why you don't want to go through with the biopsy. I'd try to speak with , maybe she will understand. It's worth a try, since you have already established a relationship with her. I'll pray that things work out for you.... Many Hugs, Chelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2008 Report Share Posted January 17, 2008 My thanks to everyone who responded to my post. I faxed today with my concerns and my request/plea that she make an exception to her " no biopsy, no treatment " rule. Now all i can do is wait and see what her response is -- and take it from there. Hollis Quote Link to comment Share on other sites More sharing options...
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