Guest guest Posted May 9, 2007 Report Share Posted May 9, 2007 Dee, I have had a flareup the past 2 months and quit using the estrace cream @ 2 weeks ago. How long can I not use it w/o having the skin go back to a 'horribe' weak stage. I have pain from the nerves and had my DV under control, but decided to go off the neurontin and within a week I had the burning and still am trying to get back to where I was prior to my MAJOR MISTAKE of going off the neurontin. Thanks for all you do ank I hope life is being good to you. With much respect, Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2007 Report Share Posted May 9, 2007 HI Joyce. *smile* Hon, sure sorry to hear about a flare up like that and know how anxious it can make us to even think of going backwards, I'm so sorry you're going thru that. But yes life is good here and thanks for asking. *smile* Just a quick note too to say that I'll be out of town this coming Thursday for a week, going to Las Vegas and hope that I will think life is still good when I'm back. LOL Just kidding..That can be a long time in Vegas if one is losing, *chuckle* . Jacks' in a pool (billiards) tournament so it should be fun. Back to V. pain tho.......yes if you don't maintain hon... it can slip back. I hate to say that but it's true. I've been well for a long time so my maintenance is just once or twice a week with the topical E & T hormones in a small peasize dab takes me all of 5 seconds before bed.. but if I do forget for any length of time, it lets me know and I'll start to get a bit tender again and you can betcha I get right back to my routine. A gal on another group often uses the analogy of how it's like brushing our teeth and we must maintain to prevent cavities, we don't just brush when we see one. Makes a lot of sense too as we have to continue to nourish & feed that tissue eh? For some of our new people here are some clips from Dr. Willems and how he first used the E for preparatory V surgery and some women did so well the surgery was cancelled and not needed... and in here you'll see too how he stress's that it MUST be maintained. He also has emphasized in one of the earlier Vulvar Pain newsletters that the patients he treats do not have clinical estrogen deficiencies nor are they menopausal by the way. That's why it can be so beneficial for younger people AND those a bit older or menopausal even more so. If it's just been a short time hon... no doubt things'll get restored again, so don't be too worried hon ok? But don't overuse it being anxious either. *grin* ... Better days ahead hon. Take care.hugs Dee~ From Dr. Willems. Head, Obstetrics and Gynecology, Scripps Clinic and Research Foundation, La Jolla, California <clipped> ''It is common gynecologic practice to prepare vaginal tissues for surgery with topical estrogen cream. (*COMMENT* In a seminar he did specifically say Estrace by brand and also mentions that the estradiol may be compounded in a mild base if Estrace irritates. Dee) Estrogen tends to thicken or toughen up the skin, and provide it with a greater blood supply.'' ''Thus, the surgeon not only has better tissue to work with, but post-surgery healing potential is increased. '' "The healing process is slow. It often takes at least six weeks for improvement to begin. However, definite progress should be seen within the first six 'months'. " ''As the condition begins to resolve, increased itching may occur. I caution my patients that this is not a yeast infection and they should not use anti-yeast medication or steroid creams, but just persevere until symptoms subside. Itching is a sign of healing.'' ''In spite of progress, flare-ups or setbacks will continue for a while, especially when a woman is premenstrual or under stress. Gradually, good days outnumber bad days.'' Comment: They do get further and further apart as in my experience as well till there were none, so it takes patience & persistence and to know if it does irritate to back off for a little while but I always returned to it and to not get discouraged or frustrated when those cycles or flare ups did hit...I just went ''OH DAMN'' ha ha I mean at least it was expected..) Dee ''Estrogen cream must be used on an ongoing basis'' (once healed) Whenever my patients discontinue it entirely, they have relapses. Many women, however, are able to decrease the dose to one application a day, then every other day, and so on, until they find their individual maintenance levels.'' ''When on this regimen, (topical) only a 'minuscule' amount of estrogen is absorbed into the system. My patients' blood levels have been normal when checked; and 'none' have reported any symptoms of hyperestrogenism, such as increased breast size.'' (Comment* He had his women on a larger amt. of E. cream (toothbrush size, and we usually say peasize) than I'd ever suggest and still they had little if any systemic absorption) Dee ''Over time, topical estrogen has the ability to effect tissue remodeling or reconditioning even in severely damaged or scarred tissue.'' ''Topical estrogen ...builds up connective tissue, making vulvar skin stronger and more resistant to inflammation. Regardless of the precise etiology (cause), physicians now have some good tools to begin helping women to dramatically reduce their vaginal pain and return to normal functioning.'' For the vast majority of medical practitioners, just to learn that the vulvar vestibule should not be removed surgically is big news. The message we want to get out is 'Don't Operate, don't laser; don't inject with interferon until you have tried the other non-invasive, non-traumatic modalities." - J, Willems, M.D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2007 Report Share Posted May 9, 2007 Thanks for the quick response, Dee. I have a few questions. Could just 2 weeks off the estrace creme, cause the skin to reverse back to a weak condtion that add to a flare up?? I didn't think that could happen, but then again, I am not as fluent on this subject as you. And your expertise is sooooo valuable to the ladies on this list. I have been to Vegas many times and always come back w/an abundance of do's and don'ts each time I go. You have a great time w/ Jack and if you lose too much $$$ just chalk it up as another experience of your life. Take Care, Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2007 Report Share Posted May 9, 2007 HI Joyce... thanks for the tip on Vegas. LOL Been there before and did cry when I got home (lesson 'not' well learned) *chuckle* but always fun. As to being off for 2 weeks of the E? I guess hon it depends on how healthy it was at the time. 'I' could probably go 2 weeks and not see too much of a change but who knows since we're all so different.. but I would think if a person went a long time with no pain and all was well that it wouldn't be as much of a change. Hon I just sent something on ''Receptors'' to my LS group and maybe you've seen me mention those here too, so I'm going to send it here too.... because in there you'll see where adding the Testosterone to the Estrace cream may just the ticket to really turn things around if you haven't considered that hon. T helps restore the E. 'receptors' *SMILE* and those with V pain may be lacking or deficient in them. You'll see in some of the abstracts. I just know with me using E cream alone for 4 months... that yes I did 'look' great.. tissue all restored and elasticity & color brought back but I was still somewhat 'tender' and just couldn't get over that hump where you couldn't forget it.. and that's when I added the T.. to my regimen only 2-3 times a week for the next 2 months that really brought me back to 100% wellness, so I hope the next post (and fair warning of course it's LONG..*grin*) helps hon... Big hugs hon Dee~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2007 Report Share Posted May 9, 2007 Hi Dee, I have asked my specialist gyno several times about the script for the T and she refuses to give me one. She even has made a sarcastic remark @ being tired of hearing @ the pharmisist that compounds it. SO that is a dead corner for getting that script. And I don't think my PCP will give it to me as he stays clear of specialist treating me. Last Oct. was my last app. w/ the gyno and she told me all looked great in the vagina, just like you described it. I am left bet. a rock and a hard place and don't have hopes of getting the T anymore. Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2007 Report Share Posted May 9, 2007 Joyce... You might try talking with Pete Heuseman at Bellevue.... 1- (toll free) or if local in Missouri He keeps a list of various doctors that use him and perhaps there's someone in your area? I'd give him a call anyway to see if he has some other suggestions, he just might.. *sigh* I do know what you mean about doctors though and it makes me want to pull my hair out at times. I know I had to fight with mine (well crying and begging worked better, LOL) but I did get it. Wish I had a sure fire way hon. You might say 'Ok since I'm doing what YOU suggested and it hasn't helped.. why not let me at least try it or what is the next step? I've GOT to do something and so far nothing has helped and yet you know it has for others"... It's a tough one though and believe me I feel for you. You might try another doctor but I know how frustrating that is too. Unfortunately I don't know where we can get legitimate T 'on line'... *sigh* (or I'd be buying it by the barrel so I don't run out LOL ) it is a very controlled substance. We can estradiol tho from overseas and it is the real stuff... but I too wish I knew of a source, god forbid the day my own doctor refuses me the T.. *sigh* (I hope it never comes) because I'd have to fight all over again with a new doc and try to convince them *sigh*. Hang in there hon.... Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2007 Report Share Posted May 11, 2007 Dee, I don't know if you will read this, as you are probably in Vegas. I thank you for your suggestions. I will take this info to my PCP and see if he will give me a script. But he hesitates giving a script that is not his area. I will give it a try, though. Thanks for all the great advice. I will let you know what happens. Enjoy Vegas, Baby. B/C whatever happenes in Vegas, stays in Vegas:) Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2007 Report Share Posted May 14, 2007 Joyce: what rate did you lower down to of Neurontin..what dosage and what time frame? HOw did you go about getting totally off it? hugs, ML << Dee, I have had a flareup the past 2 months and quit using the estrace cream @ 2 weeks ago. How long can I not use it w/o having the skin go back to a 'horribe' weak stage. I have pain from the nerves and had my DV under control, but decided to go off the neurontin and within a week I had the burning and still am trying to get back to where I was prior to my MAJOR MISTAKE of going off the neurontin.>> Quote Link to comment Share on other sites More sharing options...
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