Date: August 11, 1998
Interstitial Cystitis Network - Chat Log (© 1998, www.ic-network.com)
Featuring: Dr. Elizabeth Lee Vliet, author "Screaming to be Heard: Hormonal Connections Women Suspect.. and Doctors and Ignore"
Topic: Hormones & IC

<icnmgrjill> I'D LIKE TO WELCOME EVERYONE TO THIS VERY SPECIAL ICN CHAT OUR GUEST SPEAKER IS DR. ELIZABETH VLIET AUTHOR OF THE BOOK SCREAMING TO BE HEARD HORMONAL CONNECTIONS WOMEN SUSPECT AND DOCTORS IGNORE DR. VLIET CURRENTLY PRACTICES IN TUSCON ARIZONA AND DALLAS TEXAS. SHE SPECIALIZES IN HORMONAL ISSUES FOR MEN AND WOMEN AND PREVENTIVE MEDICINE. AS ALWAYS... WE NEED TO REMIND YOU OF OUR MEETING DISCLAIMER. THE ICN IS NOT A MEDICAL AUTHORITY NOR DO WE PRACTICE MEDICINE. IN ALL CASES... YOU SHOULD DEVELOP A RELATIONSHIP WITH A MEDICAL CARE PROVIDER THAT YOU TRUST AND REVIEW ANY INFORMATION YOU RECEIVE WITH THAT PROFESSIONAL. UNDER NO CIRCUMSTANCES SHOULD ANY ONLINE COMMUNICATION BE CONSIDERED A SUBSTITUTE FOR FACE TO FACE MEDICAL CARE.

 

<icnmgrjill> LADIES AND GENTLEMEN, I WOULD LIKE TO INTRODUCE TO YOU DR. ELIZABETH VLIET. DR VLIET, WOULD YOU LIKE TO MAKE AN OPENING STATEMENT?

<DrVliet> Hi everyone! I look forward to your questions. I want to let you know that I think you are really the experts on IC. My role is to give you my thoughts and observations on hormonal connections - whether causative or contributory and to bring up issues I think have been overlooked, not to say that I think these are the only causes! So, let's take some questions.

<icnmgrjill> QUESTION #1... HOW DID YOU FIRST GET INTERESTED IN IC?

<DrVliet> I had patients describing the onset of IC problems after hysterectomy, or menopause, or tubal ligations and I began to wonder if something about the hormone drops could be causing some of the bladder pain and other symptoms since we know that estrogen decline at menopause has lots of negative effects on the bladder. I have worked with hormone connections in many problems -- migraines, depression, mood changes, and allergies -- for many years, so it seemed reasonable to look at these connections in IC as well...

<icnmgrjill> QUESTION #2..PHYSIOLOGICALLY... CAN YOU TELL US WHAT HAPPENS WHEN WE FLARE, EITHER DURING OVULATION OR BEFORE MENSTRUATION??

<DrVliet> Ovulation and menstruation both are times of the cycle when the estradiol levels drop sharply. This causes pH changes, change in pain threshold, change in the lining tissue, and an increase in the adrenaline surges in the body - which can set off other physical reactions, such as having to void more often...

<icnmgrjill> YOUR BOOK MENTIONS THAT SOME PATIENTS CAN DEVELOP SYMPTOMS WHICH APPEAR TO BE BLADDER INFLAMMATION EVEN THOUGH THEY ARE OF A YOUNGER AGE AND PERHAPS NOT FACING MENOPAUSE JUST YET. CAN YOUNGER PATIENTS HAVE A DROP IN ESTRADIOL WHICH COULD CAUSE IC LIKE SYMPTOMS??

<DrVliet> Yes, I have evaluated hundreds of younger women who turn out to have very low estradiol levels and many of the same symptoms we commonly think are just related to menopause. The important point is not the AGE of the person, but what is her (or his) endocrine status - and how low are the hormone levels.

<icnmgrjill> AND HOW DO WE HAVE THAT TESTED??

<DrVliet> People will hear a lot of controversy on this point. I have been doing blood (serum) tests of hormone levels for more than a decade and I find there is excellent correlation between low estradiol, low testosterone, thyroid dysfunction and the symptoms of IC, PMS, new onset or worsening migraines, fatigue, and SO ON.

<icnmgrjill> ONE OF THE ANECDOTAL TRENDS THAT WE HAVE NOTICED IN THE IC COMMUNITY IS THAT MANY PATIENTS APEAR TO DEVELOP SYMPTOMS DIRECTLY AFTER SURGERY.. PARTICULARLY HYSTERECTOMY OR CHILD BIRTH...

<DrVliet> Yes, this fits with my point that I think the hormone levels should be checked. It has not been routine for OB-Gyns to check estradiol levels but recent studies have shown that as many as 60% of women who have a hysterectomy (even leaving the ovaries in place) will have menopausal levels of estradiol within three years of surgery. That means many younger women are at risk and don't know it unless someone is checking their hormone levels. It is truly staggering what we see in our practice!

<icnmgrjill> AS A THOUGHT, THEN FOR IC PATIENTS WHO ARE YOUNGER, SAY IN THEIR THIRTIES, WHAT WOULD CAUSE ESTRADIOL LEVELS TO DECREASE? WHAT IN THEIR LIFE COULD CONTRIBUTE TO THAT?? WE SEE SO MANY UNNNECESSARY HYSTERECTOMIES FROM PATIENTS WHO HAVE DEVELOPED A WIDE VARIETY PELVIC PAIN ISSUES... COULD IT BE, INSTEAD, THAT AN OUTSIDE FACTOR HAS CAUSED A CHANGE IN ESTRADIOL??

<DrVliet> Point 1: I think it is crucial for IC patients to have these hormone levels checked. It is such significant factor and so easy to address with good therapeutic options. Point 2: what outside factors can cause estradiol decline? There are many things which can cause this. I have patients who have severe viral syndromes that caused sudden onset premature ovarian failure. Have one lady who had a black widow spider bite that caused early menopause acutely and also IC. These are just some examples of the wide range of things. Then there is the issue of environmental chemical exposure, dyes in foods and beverages. Other illnesses can cause ovarian decline sometimes we see this after tubal ligations and the list goes on and on...

<icnmgrjill> SOMETIMES WE ALSO SEE OVARIAN CYSTS AS A RELATED CONDITION?? I MYSELF HAVE HAD SEVEN.

<DrVliet> I think there is a connection between the autoimmune ovarian disorders and ovarian cysts, endometriosis, and IC. We also see a strong correlation with patients in our practice who have an autoimmune thyroiditis and earlier than normal loss of their estrogen, who also have ovarian cysts over and over. I think we physicians HAVE to look at these things with a more integrated approach than has been commonly the case...

<icnmgrjill> A QUESTION FROM THE FLOOR DO YOU HAVE ANY SUGGESTIONS ON HOW TO CONVINCE AN HMO TO ORDER THE ESTRADIOL BLOOD TESTS.. WHEN THEY MIGHT BE RELUCTANT TO DO EXTRA TESTS? ?

<DrVliet> Tell them they are paying a fortune for your care if they DON'T check these hormone levels!! I have patients who are routinely on 8-12 medications instead of addressing the underlying cause and once we get the hormone issues addressed and proper therapy started, I find we get people off of a lot of other medications (like Prozac) they really didn't need!. And that saves the HMO a lot of money, not to mention the benefits to patients who are taking less medication, having fewer side effects from meds, less out of pocket costs, etc.

<icnmgrjill> THE NEXT QUESTION IS FROM SUZ..SHE ASKS... ESTRADIOL LEVELS CHANGE THROUGH THE MONTH. SHOULD THE BLOOD TESTS BE DONE SEVERAL TIMES A MONTH TO GET A GOOD READING?

<DrVliet> Yes, I recommend doing them at the low point of the cycle (Day 1-3 of menses) and again at the luteal phase peak for estradiol and progesterone which is about day 20 in a typical cycle. I look at the ratio of estradiol to progesterone, as well as how low the levels of estradiol go. What is very interesting is the pattern that has emerged in testing hundreds of women with my protocol. I find that the early phase of estradiol decline occurs first and the progesterone remains normal so the ratio is off, and this is associated with women being very symptomatic during the luteal phase and bleeding days. This is also different from what we were taught in medical school, when no one looked at the actual hormone levels. You will read that it is progesterone that declines first in the transition to menopause. It turns out that this misses the first phase when estradiol has declined... Hope that helps..

<icnmgrjill> THE NEXT QUESTION IS FROM TERRI.. SHE DEVELOPED SYMPTOMS AFTER NORPLANT AND HAVING TO TAKE HIGH LEVELS OF BIRTH CONTROL PILLS. ANY CONNECTION??

I have found that Norplant causes a wide variety of serious side effects. It tends to suppress the ovarian production of both estradiol and progesterone. Some of the early studies on Norplant showed that as many as a third of women had sustained low levels of estradiol - averaging 18-53 pg/ml. These are menopausal levels below the threshold for normal bladder function, normal bone preservation and these are younger women who get this contraceptive. Needless to say, I don't recommend it for women who have mood, headache or bladder problems.

<icnmgrjill> THE NEXT QUESTION IS FROM OUR MESSAGE BOARD...If you're 34, estrogen cream applied vaginally helps dramatically with urinary leakage as well as moods, would you recommend some sort of follow-up to see what's going on? Also,WHAT TYPE OF FOLLOWUP SHOULD BE DONE?

<DrVliet> Yes, because if you are getting enough estrogen to affect moods then you are getting enough that it can also stimulate the uterine lining and possibly lead to hyperplasia (lining too thick) - so you should have a gynecologist check this. We usually do it with transvaginal ultrasound to actually measure the thickness of the uterine lining. Vagina estradiol can be give as cream, or the new Estring vaginal ring - and I have definitely found that local delivery of estradiol to the vaginal \ tissue also provide more direct estradiol to the bladder, which can help IC patients. Also, we sometimes suggest that women take a small dab of the estrogen cream and apply it around the urethral opening, which can help restore more normal tissue and relieve some of the burning..

<icnmgrjill> THE NEXT QUESTION IS FROM CAROL. ONE OF THE UNUSUAL THINGS THAT SOME IC PATIENTS EXPERIENCE IS A SENSATION OF PERSISTENT CLITORAL STIUMULATION... ANY IDEAS WHAT THIS IS ABOUT???

<DrVliet> Is it like a tingling sensation?

<icnmgrjill> YES..

<icnmgrjill> BUT PAINFUL TOO...

<DrVliet> It may be similar to the nerve ending pain that can come with estradiol levels too low and it may also be related to higher levels of testosterone relative to the amount of estradiol present. I hear this kinds of comment from women who overstimulate the clitoral tissues with testosterone cream applied to the clitoris. So if this happens, I tell them to stop applying it to the clitoris for awhile, and use another site. So it may be that what the IC patients are describing is a related mechanism...

<icnmgrjill> ANY SUGGESTIONS FOR PATIENTS WHO WOULD LIKE TO REDUCE THAT SENSATION??

<DrVliet> 1. Have the hormone levels checked to see if this is a factor. 2. Consider asking your doctor for an estradiol cream, but I caution you to be careful about the commercial ones, they contain propylene glycol which can aggravate the burning. I get estradiol creams for my patients with this problem from compounding pharmacies and ask them to make it without the propylene glycol and that helps. Then there are the symptomatic options you mentioned with ice (although I would think that would be worse than the problem!)

 

<icnmgrjill> IN YOUR BOOK.. YOU SPEAK MUCH ABOUT PREMARIN...CARE TO GIVE US YOUR COMMENTS?

<DrVliet> Premarin is a problem in my opinion, especially for IC patients, for several reasons. (1) It contains about 63 different dyes and coatings on the tablet, which are using chemicals that can be quite irritating to the bladder lining and the urethra. (2) It gives high derived estrogens than again can be irritating to the bladder lining as they are metabolized. (3) It does not tend to produce adequate levels of the 17-beta estradiol native to human females and the biologically active form of estrogen for women before menopause. And there is another concern. Since the estrogen amount is high with Premarin, I think that's a concern long term with the breast cancer issue. I know this is the most commonly prescribed estrogen in the US, but in 1998, we now have many better, more natural and more physiologic estrogen options for women. IC patients in particular who want to consider estrogen should be aware of these issues...

<icnmgrjill> ALSO.. IN YOUR BOOK... YOU TALK ABOUT DYES AND THE REACTIONS THAT SOME PEOPLE HAVE TO TARTRAZINE BASED DYES.. WHAT'S UP WITH THAT??

<DrVliet> I am not a biochemist, but I think it is related to the way these chemicals are metabolized, and the "irritant" effects on the bladder lining from chemicals in this class. I have seen the urinary burning and urges to void really aggravated in non-IC patients from such compounds, so I think this is an area in which IC patients can take extra care to eliminate a POTENTIAL problem...

<icnmgrjill> THE NEXT QUESTION COMES FROM SEVERAL PEOPLE IN THE ROOM WHO HAVE HAD HYSTERECTOMIES.. THEY WANT TO KNOW HOW THEY WOULD FIND THEIR LOW POINT FOR ESTRADIOL TESTING??

<DrVliet> If the ovaries are still present, there are usually some body changes that signal the ovarian cycle. So I tell patients to have one blood draw when they feel the typical "PMS" symptoms - bloating, breast tenderness, food cravings, moods changes and such. If women don't have ANY such remaining symptoms of the ovarian cycle, I have them just go on any day and get the full ovarian profile of hormones. Then I can usually help them figure it out based on the results...

<icnmgrjill> ANOTHER QUESTION FROM THE FLOOR. IC PATIENTS USUALLY COMPLAIN OF BLOATING.. WE CALL IT THE IC BELLY WHERE.. AT ONE MOMENT.. WE CAN HAVE FLAT STOMACH AND THEN WITHIN AN HOUR... WE CAN LOOK FIVE MONTHS PREGNANT WITH A DISTENDED BELLY THIS HAPPENS FREQUENTLY THROUGHOUT THE MONTH, IF NOT ON A DAILY BASIS?? ANY IDEA ON WHAT 'S HAPPENING WITH THIS EDEMA?? SWELLING??? BLOATING?? OR WHATEVER IT IS??

<DrVliet> That may be happening with bladder distension rather than the type of bloating that comes with the premenstrual week which is usually a combination of fluid retention, constipation, and fluid moving from inside the blood vessels to the "interstitial" spaces. Other that this hypothesis I can't say what causes it in IC patients...

<icnmgrjill> JOY WANTS TO KNOW IF THERE ARE ANY PROS AND CONS OF CREAMS VERSUS PILLS FOR ESTROGEN??

<DrVliet> There actually are lots of reasons to use either a cream or patch form of all these hormones, always using a prescription with known amount. I don't recommend the OTC ones because the amounts of active hormones are usually put on the label and it can cause problems. In my book, I have a whole chapter outlining the reasons why it may be wise to use a patch form of hormone delivery. See chapter 15... It may be the type of estrogen causing the flares not the estrogen per se.

<icnmgrjill> ANY COMMENTS ABOUT MEN WITH IC.. AND ANY HORMONAL ISSUES THAT THEY MAY BE FACING??

<DrVliet> Yes, we see men with lower than normal testosterone having these problems. Remember, for both men and women, these are not JUST reproductive hormones -- they are metabolic hormones that affect the cells of every tissue and organ in our bodies! We started a new program at HER Place to help the men -- it is called HIS Corner at HER Place! It is amazing what we are finding for the men too!

<icnmgrjill> WE'RE GOING TO TAKE JUST TWO MORE QUESTIONS... THE NEXT ONE IS FROM SUZ... SHE HAS A FAMILY HISTORY OF BREAST CANCER. HER MOTHER AND GRANDMOTHER BOTH HAD MASTECTOMIES AND SHE HAS HAD A BENIGN TUMOR REMOVED. SHOULD SHE BE EXTRA CONCERNED ABOUT HRT THERAPY, AS AN IC PATIENT BUT ALSO WITH A FAMILY HISTORY OF CANCER??

<DrVliet> This is a complex issue and one that requires a careful INDIVIDUAL assessment. But with new information available, it is not AS rigid a reason to avoid estrogen as we used to think. One aspect is to make sure the estrogen used is physiologically as natural as possible, and avoid alcohol which increases breast cancer risk, and also make sure to stay in a healthy body weight and % body fat range, since these are also factors increasing breast cancer risk. That's a short to a complex question - in my book, I devoted a whole chapter to this subject!

<DrVliet> Best wishes to everyone, I enjoyed being here. That will be my last answer. I do have a web site of information - it is located at www.azstarnet.com/~herplac --- until we get it all switched over to our new site www.herplace.com. Also, you can read review of my book on Amazon.com Enjoyed being with you all to night Take care of your health and continue the great work supporting each other!

Elizabeth Lee Vliet, MD

About the speaker:
© 1998, The IC Network, All rights reserved. This transcript may be reproduced for personal use only. If you do so reproduce, we ask only that you give credit to the source, the IC Network, and speakers, Dr. Elizabeth Lee Vliet & Jill Osborne. For additional use, please contact the ICN at (707)538-9442.