What estrogen cream do you use

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So I saw my PCP yesterday. Hadn't been able to get in to her for two years. She was great at listening to me. Finally after 10 years with LS she is referring me to a gyn at the hospital. 

I want to ask for an estrogen cream. So my question to you all is what do you use on your vulva and do you have it compounded in something. If so what is it compounded with.

Shari

 

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  • Posted

    On compounding pharmacies and bioidentical estrogen, from Quackwatch:

    "many offbeat physicians are prescribing compounded "bioidentical" products as though they are safer than standard prescription drug products. On October 31, 2005, the American College of Obstetricians and Gynecologists (ACOG) warned against these products and the saliva tests typically used by those who prescribe them. In strongly worded documents [4,5], ACOG stated:There is no scientific evidence to support claims of increased efficacy or safety for individualized estrogen or progesterone regimens prepared by compounding pharmacies.

    Hormone therapy does not belong to a class of drugs with an indication for individualized dosing. Salivary hormone level testing used by proponents to "tailor" this therapy isn't meaningful because (a) salivary levels are not as accurate as blood levels and (b) they can vary within each woman depending on her diet, the time of day, the specific hormone being tested, and other variables.

    Most compounded products have not undergone rigorous clinical testing for either safety or efficacy. There are also concerns regarding their purity, potency, and quality.

    The FDA requires manufacturers of FDA-approved products that contain estrogen and progestins to include a black box warning that reflects the findings of the Women's Health Initiative. However, compounded products (including "bioidentical" hormones) are not approved by the FDA and have been exempt from having to provide patient package inserts that contain warnings and contraindications for estrogens and progestins.

    Given the lack of well-designed and well-conducted clinical trials of these compounded hormones, all of them should be considered to have the same safety issues as those hormone products that are approved by the FDA and may also have additional risks unique to the compounding process."

    • Posted

      Hi Morrell,

      After much research and reflection, I have reached a different conclusion re: the bioidenticals for hormone replacement therapy.  My compounding pharmacy has numerous accreditations, I have blood (not saliva testing) in order to monitor how much hormones are being absorbed systemically, and if you google critiques of the Women's Health Initiative study, you will find numerous criticisms that the study had severe design flaws.  Here is one quote from PubMed:

      "c;84(6):1589-601.A critique of the Women's Health Initiative hormone therapy study.Klaiber EL1, Vogel W, Rako S.Author information

      Abstract

      OBJECTIVE:

      This review critiques The Women's Health Initiative (WHI) study, focusing on aspects of the study design contributing to the adverse events resulting in the study's discontinuation.

      CONCLUSION(S):

      Two aspects of the design contributed to the adverse events: [1] The decision to administer continuous combined conjugated equine estrogen (CEE)/medroxyprogesterone acetate (MPA) or E alone as a standard regimen to a population with little previous hormonal treatment, ranging in age from 50-79 years, who, because of their age, were predisposed to coronary and cerebral atherosclerosis. [2] Selection of an untested regimen of continuous combined CEE plus MPA, which we hypothesize, negated the protective effect of E on the cardiovascular and cerebrovascular systems. Multiple observational studies that preceded the WHI study concluded that the use of E alone and E plus cyclic (not daily) progestin combination treatments initiated in early menopause had beneficial effects. The therapeutic regimens resulted in prevention of atherosclerosis and reductions in coronary artery disease mortality. It is our conclusion that the WHI hormonal replacement study had major design flaws that led to adverse conclusions about the positive effects of hormone therapy. An alternative hormonal regimen is proposed that, on the basis of data supporting its beneficial cardiovascular effects, when initiated appropriately in a population of younger, more recently menopausal women, has promise to yield a more favorable risk/benefit outcome."

      The "conjugated equine estrogen" is not chemically identical to human estogens, as are in bioidenticals.  And these were given primarily to much older women. You have referred a number of times to how bad you felt when you were absorbing larger doses of estrogen.  I know that when I was on conventional estrogens for polycystic ovaries and birth control, I felt terrible--moody, bloated, headaches, hypoglycemic, etc.  I do not feel that way on the bioidentical creams.  I actually feel pretty good and my practitioner makes sure that my blood levels stay low but still in the premenopausal range.  I could just use smaller amounts topically for the local effects, but as I have mentioned, I like maintaining good bone health, good skin, a low heart attack risk, normal libido, etc. Many people mention that I look younger than I am, and I bet some of that is that I maintain my hormones at low, normal levels.  There are many problems associated with the horse urine estrogens, not the least of which is breast cancer, strokes, heart disease.  If you look at the critiques out there of their poorly designed study, you'll see why. Bioidenticals are just like they sound--chemically like our own hormones.  Logically, there's not a lot of reason for these to be associated with all of the health risks that synthetics are (low dose topical synthetic wouldn't be a big risk either, I would assume).  It's a bit like comparing transfats to natural fats--a whole different (toxic) effect in the body. Plus, there is not the funding for the studies--drug companies are not interested in running studies on drugs that are natural because they can't be patented.  Just because we don't have the studies to support at this point (I hope that someone is looking at this) does not logically mean that they aren't safe or effective.  It means that we don't have the data, yet. The drug companies and the FDA (who is in bed with the drug companies) are quite threatened by compounding pharmacies and vitamins and they have been launching attacks on these industries in recent years claiming to be protecting the public.  I believe that they are protecting their pocketbooks, as more and more people are using these alternatives (for good reasons). Compounding pharmacies had ONE well-reported problem in a recent year-- and that was not from an accredited compounding pharmacy.  Compare that to the thousands upon thousands of people who are injured EACH YEAR by conventional pharmaceuticals, and my conclusion is that I will take my chance with the compounding pharmacy.  

      Respectfully Yours, 

      Suzanne 

    • Posted

      Thanks for the details, Suzanne. If I had ever had an interest in taking estrogen systemically as you do, I'd surely want to avoid Premarin. I do think it's a crummy product. After only a few uses I already have a yeast infection coming on. It's just not worth it. It has a lot of perfume in it so I may be reacting to the base, but any irritation provides open ground for yeast, I believe.

       

    • Posted

      Thank you Suzanne, I think that was well put.  I too have been struggling with the Premarin.  Till I received the alternative.  Big difference in mood/functioning of brain, and since breast and ovarian cancer is in my genes, felt a bit better using the alternative. 

      However, I have to also note that I'm still wondering what it does for or against LS.  Was it Goldstein who also wondered about the benefits of using estrogen at all, Premarin or other, to cure LS? (Though also considering the added benefits of bone health etc. with the estrogen supplement.)

    • Posted

      Oh, so sorry about the yeast infection!

      It might be interesting to compare your experience with this one with a bioidentical to see if it is as irritating (both the base cream and the natural estrogen). 

    • Posted

      Hi Hanny,

      Well, as I reported above in some post, I stopped using the bioidentical creams on my vulva when a new gynecologist suggested theoretically that all of the creams might actually be causing the LS. After I stopped the creams, my LS actually got worse, even with adding the clob cream, then ointment. So now I am adding back the estrogen cream, and it seems to be getting better, again.  

      Since menopause is associated with a big increase in women acquiring LS, it seems logical to guess that normal estrogen levels may somehow be protective.

      Plus, estrogen plumps tissues and stops normal atrophy associated with menopause.  It just feels like the tissues are better able to maintain themselves, as in the incidence of UTI's being lower in estrogenated tissues.

      I don't think that estrogen is a cure, but I think that it may help. --Suzanne

    • Posted

       Great news to hear that your LS is improving. I'm delighted for you. This is due reward for your continual experimentation and generous sharing! 
    • Posted

      That's indeed a good point - it helps a little, and that's what we have to be content with for now.  It makes us a little more comfortable than we otherwise would have been.  Thanks Suzanne.
    • Posted

      Suzanne, I have a good friend who has multiple chronic problems including thyroid, celiac disease, multiple chemical sensitivities, etc. and the reason she's stayed with her gynae two hours from our little village is that she prescribes bioidentical drugs, which my friend can obtain in the city nearby. I'm luck LS is my only problem, and I'm not that interested in sex or beauty, not enough to fuss about all this so much. I was really very good with just the clob ointment, so that's where I'll stay.
    • Posted

      This is an interesting article for any of us to read by:

      Elizabeth G.Stewart MD

      Director,Vulvovaginal Service,

      Assistant Professor of Obstetrics and Gynecology,

      Harvard Medical School, Boston

      It outlines treatment via cream vs ointmentand mentions how hormonal cream helps and doesn't help.

      Vulvovaginal disorders:

      4 challenging conditions

      Page 37 Lichen sclerosus:

      Why lifelong follow-up is a must.

    • Posted

      Helen, this (Elizabeth Stewart)  is the material a friend doctor (who apparently had attended one of the workshops on the topic) gave me this material a while ago, which I copied and gave to the doctors I was attending at the time.  Especially lifelong follow-up she thought important.  And that's exactly what I'm not receiving.  And I suspect that I'm not alone in this.  
    • Posted

      Hi Morrell,

      Your friend's problems sound familiar to me.  

      The thing about bioidenticals is that they are about health, not necessarily just about sex or beauty (although they help with that, too).  They improve heart health, bone density, reduce breast cancer risk, and generally keep our bodies operating like when we are premenopausal when nature wants to keep us around.  I just found an article from life extension foundation that gives a good scientific overview. I think that you will get a lot of detail that you are needing by looking this over.  I'm going to put it in the next message to you, so that if it goes to moderation you can look for it when released by Alan.  The article is called, "Bioidenticals, Why are they Still Cintroversial?"  Maybe you can google it, also.  Anyone interested in hormones would do well to read this article.  --Suzanne

       

    • Posted

      Hi Helen--Very interesting, though somewhat discouraging article.  She does mention that the populations with the highest rates are prepubertal or menopausal, which suggests some role for hormones in triggering onset.  She says that estrogens have no role in treatment of LS, although are valuable for skin integrity.  Hmmmm... I would think that helping the skin maintain integrity might be worthwhile for those of us with LS. Thanks for telling us about this article.  --Suzanne 
    • Posted

      Helen, Elizabeth Stewart – I forgot about her. She's kind of the foremost authority on LS. Perfect summary article. Pretty clear that fusing and scarring are irreversible, so I'm good with forgetting about the estrogen.

      "Refer for help with depression and/or negative body image, if present."

      Good reason to be gentle with each other here, whichever treatment route we feel comfortable with.

    • Posted

      One thing to keep in mind is that it looks like this article was written 12 years ago.  I would think that Goldstein might be a little more current.  Still a good overview of LS if we don't take it as gospel.
    • Posted

      You are quite right, suzanne00 - ( my article is dated 2006 but still not very current).  I just wish that there had been more progress made in the treatment by now.  Maybe Goldstein does  suggest something more current?  I will have to review the webinar.
    • Posted

      Nothing that Dr. Goldstein says is different. He's doing a study on ten women to see if those injections help. But basically it is what it is.
    • Posted

      The article that I read by her on this topic was from a book published in 2002.  I don't think that there was much contradictory by Goldstein, but I need to review it again, also.  He seemed a bit more upbeat and positive about the outcomes that he was having.  Thanks again for the article.
    • Posted

      Suzanne, I found the article on the Life Extension Foundation site (I wonder if they were in existence before the film Vanilla Sky was made) and decided to look up all the members of the panel who reviewed the 'position paper'. Found the affiliate program, too (7 to 10% commissions!) I'm just an old fogey not up on all these trends. I had no idea what an industry 'anti-aging' has become.

      The American Academy of Anti-Aging Medicine (A4M) is a United States registered 501(c)(3) nonprofit organization that promotes the field of anti-aging medicine and trains and certifies physicians in this specialty. As of 2011, approximately 26,000 practitioners had been given certificates.[1] However, the field of anti-aging medicine is not recognized by established medical organizations, such as the American Board of Medical Specialties and the American Medical Association (AMA). In addition to certifying practitioners, the Academy's activities include lobbying, education of the public, and public relations. The A4M was founded in 1993 by Dr. Robert Goldman and Dr. Ronald Klatz, osteopathic physicians,[2] and now has grown to 26,000 members from 110 countries. The organization sponsors several conferences, such as the Annual World Congress on Anti-Aging Medicine.[3]

      Several of the anti-aging methods recommended by the Academy have wide support among experts in the field, such as exercise and a healthy diet, but others, such as hormone treatments, do not have support from a consensus of the wider medical community. Many scientists studying aging dissociate themselves from the claims of A4M,[4][5] and critics have accused the group of using misleading marketing to sell expensive and ineffective products.[6] In contrast, the Academy sees itself as acting within science, stating that it bases its ideas on mainstream scientific research, and arguing that its ideas challenge current medical practice.[7] The A4M's founders and merchants who promote products through the organization have been involved in several legal and professional disputes.

      I'm a huge believer in the placebo effect. I love my shiatsu treatments. But if what's wrong with mainstream medicine is Big Pharma's money grab, how do these supplement peddlers provide a pure-hearted alternative?

      I know I'm swimming against the stream, but this is a forum for people who have a scarring, disfiguring disease that science doesn't really care about. We're lucky to have each other to help maximize the benefits of what treatments and maintenance tips are available.

       

    • Posted

      Hi Morrell--I'm not sure what you are saying.  Are you saying that "anti-aging physicians" are biased just like conventional medicine and big pharma due to financial incentives?  I suppose wherever money can be made, unscrupulous practices abound.  Unlike conventional medicine though, there are many practices that this group advocates that actually aren't making big profits, such as vitamin D, bioidenticals, and life style changes.  

      The issue that I have with conventional medicine is that they aren't asking "Why?"  They are symptom/treatment-focused rather than health-focused or curious about what the underlying causes are.  I had a physician tell me recently that he wasn't interested in whether my son, who has hypothyroidism, had thyroid antibodies since the treatment is the same and no one knows why people get autoimmune disorders.  End of case.  I find that quite close-minded and simplistic.  He is not a scientist, but a mechanic.  

      Functional medicine is interested in the science behind the causes to our illnesses.  It is not flaky or hysterical or without a basis.  It asks why, develops solid hypotheses, and seeks to treat the underlying causes.  It employs conventional medicine where it makes sense to do so, especially in the treatment, but doesn't stop at symptom reduction but seeks to create conditions for health and normalcy.  There is no doubt that we have to be educated consumers of health information these days.  There are many groups that would have us hand over money to them.  Does that mean that all practitioners of a particular bent are greedy charletans?  I think that is a simplistic answer.  

      Wouldn't it be great if we could just trust our doctors to know what to do for us?  If I have a broken bone or heart attack, I definitely will.  If I have a chronic disease I may keep looking for answers, because conventional medicine doesn't know a huge amount yet in this area.  

      Further, the issue is not whether I can trust the supplement maker's advice, but whether the research and analysis supports use of the supplement.  However, unlike big pharma and the FDA, the supplement peddler may not be making billions of dollars, and have wide reaching political sway, and use propaganda tactics to make all that money. In every case though it makes sense to do our homework and listen to our intuition before embarking on any treatment strategy. I will keep supporting whomever has an approach that makes good scientific sense to me, regardless of their financial incentive.    

    • Posted

      Yes, Suzanne, that is the other point of view. I think the key to the gap is (from your third paragraph) "It asks why, develops solid hypotheses, and seeks to treat the underlying causes." The missing step between hypotheses and treaments is research. Yes, I've read the articles exposing corruption in clinical trials. That doesn't mean all clinical trials are worthless.

       

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