Interview with Dr. Howard Posner and Nora W. Coffey
HERS NEWSLETTER
Hysterectomy Educational Resources and Services
Vol. 2 No. 4
A Note From Nora W. Coffey
March 1985 marked the third anniversary since the founding of HERS. We have counselled more than 3,000 women who had been advised to undergo hysterectomy. As a result of counselling and/or referral to a specialist knowledgeable in the area in which women needed information 98% of those women did not undergo hysterectomy. Their referral physician told them hysterectomy was not indicated. HERS has counseled 6,000 women who have undergone hysterectomy. Women who, before contacting HERS, never had it confirmed by anyone that the symptoms they have experienced since their surgery such as profound loss of stamina, loss of sexual response, loss of libido, urinary incontinence, bowel problems, bone and joint pain, memory loss, flat affect and the countless other symptoms were caused by hysterectomy. HERS hopes that you will join us in our efforts to educate every single person about the real consequences of hysterectomy...Thanks to the very hard work and perservance of Leigh Ferraro in contacting CBS numerous times she was able to arrange two half-hour segments about hysterectomy. Sybil Shainwald, Chair of the National Women's Health Network, Niels Lauersen, a gynecologist and myself appeared on the first program. Sybil Shainwald, Richard Houseknecht, a gynecologist, and I appeared on the second program. Houseknecht said he does not believe any of the after-effects of hysterectomy reported by me or Sybil. When I offered to provide him with copies of research which document the symptoms, he responded: "Don't send me anything, I don't want to read anything." It is most unfortunate that a practicing gynecologist chooses to continue to bury his head in the sand in the hopes that women, too, will remain unenlightended. The first program, aired May 6, To Your Health, is a segment of Daybreak. The airing time of the second taping, Heart of The Matter, has not been announced. HERS is sponsoring a Hysterectomy Conference in Boston September 28... The Third Annual Hysterectomy Conference will be held in Philadelphia October 12. Early registration is suggested. Registration forms can be obtained by calling or writing HERS...
We have changed the traditional format of the Newsletter for this issue and the next issue to provide the transcript of an interview which contains many of the most commonly asked questions about the options to and after-effects of hysterectomy. I was interviewed by Howard Posner, M.D. on the program The Health Connection on WHYY. Dr. Posner is an excellent interviewer and hosts this program weekly.
Interview with Dr. Howard Posner and Nora W. Coffey
The Health Connection
WHYY FM
October 20, 1984
Posner: Just what is meant by the term "hysterectomy?"
Coffey: Hysterectomy is the surgical amputation of the uterus. Bi-lateral salpingo oophorectomy is removal of both tubes and both ovaries.
Posner: Both ovaries. Now, can you explain in general, or in specific, what the ovaries do and what the uterus does?
Coffey: The ovaries produce hormones such as androgens and estrogens and the uterus produces prostacyclin, which protects the cardiovascular system. It was thought that women live much longer because they're under less stress, but now we know that is really not true. Prostacyclin certainly helps in that process. The uterus, of course, is a reproductive organ as well as a sexual organ. The uterus contracts during orgasm. The ovaries produce androgens, which also affects sexuality.
Posner: In other words, women have androgens as well as estrogens. They have both male and female hormones in a particular balance.
Coffey: That's right.
Posner: Is it necessary to have the uterus after the age of child-bearing is past? Are there still functions to the uterus and the ovaries after menopause?
Coffey: Both the uterus and the ovaries continue to function for many years past menopause and the ovaries do continue to produce hormones for many years and, of course, the uterus also continues to be a part of orgasm.
Posner: When one has a hysterectomy, could you give the statistics on how often it's done, how many are done in this country annually, and how often it's with the ovaries being removed, as well.
Coffey: Hysterectomies are performed at the rate of 800,000 per year in this country and oophorectomy is performed on half a million women per year. Oophorectomy is removal of the ovaries and female castration. Posner: About what percent of women in the age group of 30-50, do you think, have a hysterectomy annually? Is it one percent or two percent? Coffey: The average age at which hysterectomy is performed is 35, which means that half of those women are under the age of 35. The largest age group at which hysterectomy is performed is between 17 and 23 years old and between 35 and 43. Posner: Why would it be done in the younger group?
Coffey: The most common reason is endometriosis. Actually, suspected endometriosis—although it is really not confirmed in more than 10 percent. It is the most common reason that hysterectomy is performed. Fibroids are also a very common diagnosis before surgery. It is more often confirmed because there is a small mass that can either be felt or diagnosed with an ultrasound unlike endometriosis, where there is pain and very often no other symptom.
Posner: Just what is endometriosis?
Coffey: The lining of the uterus contains endometrium and when that grows outside of the uterus into the abdominal cavity, that's considered endometriosis.
Posner: And this can cause pain, you say, with the menstrual cycle?
Coffey: The most common symptom is pain and the pain can be really quite severe. The typical pattern is for a woman to see a gynecologist with the pain generally starting at ovulation and continuing until a period is over and then be fine until the next time she ovulates. She's generally told there's nothing wrong with her, often referred to a psychologist or psychiatrist and considered a hypochondriac. When, finally, someone says, "I know what your problem is—you have endometriosis" she is often very relieved and feels as though somebody has finally defined this problem; she is not really a hypochondriac. Hysterectomy is suggested. Removal of both ovaries is also suggested because endometnosis is stimulated by the production of estrogen, even though it's really not a very good reason to remove the uterus and ovaries because endometriosis does recurr in a very large number of cases.
Posner: Even though you've removed the ovaries and the uterus.
Coffey: That's right. It's very difficult to remove — almost impossible to remove— all endometriosis. If any remains, estrogen will stimulate the endometriosis to grow and proliferate. There is estrogen produced elsewhere in the body, even after the ovaries are removed.
Posner: Do you have any statistics as far as if we took a group of one hundred women who had total hysterectomy for endometriosis, what percent would have gotten better, what percent would be made worse, and what percent will remain unchanged?
Coffey: If estrogen is not given after hysterectomy, then endometriosis will not continue to proliferate, so that in about twenty percent of women who undergo a hysterectomy and take estrogen, the endometriosis returns and continues to grow. As many as five, six, and seven surgeries for removal of endometriosis is really common.
Posner: What are some other common reasons for hysterectomy?
Coffey: The two most common reasons for hysterectomy are prolapse, which generally only occurs in a woman who has had two or more children, although it can occur after the birth of one child. And that's where the ligaments that support the uterus and the muscles become relaxed and allow the uterus to protrude, some-, times even out of the vagina, which is a severe prolapse. It can be very mild or moderate, in which case a woman may not even realize that she has a prolapsed uterus, but on a routine check-up may be told that her uterus is prolapsed. Hysterectomy is often recommended as the only possible cure and the bladder may also begin to cause some incontinence as a result of this, particularly a stress incontinence. It's not something that should be of any great concern if it's not causing symptoms. It's not anything that will, in any way, cause any kind of harm or put a woman in any danger. If a prolapse is slight or moderate, there are exercises that can be done. Kegel exercises, which women have very good success with, where they tighten the muscles of the uterus, tighten the muscles of the abdomen and relax them. Do that several times, holding the contraction for a longer period of time until you can work up. to about thirty times. That, two or three times a day can really give very good results in tightening all of those muscles and avoiding any surgery for a prolapse. There is also the use of a pessary, which is a very, very old method for supporting the uterus which still works very well. It's a ring that is inserted in the vagina and is used to support the uterus and only works in a slight or moderate prolapse. It cannot work with a severe prolapse.
Posner: So we have, so far, endometriosis as an indication for hysterectomy, sometimes. Uterine prolapse—you mentioned fibroids. Are there any other common causes for hysterectomy?
Coffey: The other common reason is bleeding between periods, and it may be very slight bleeding. It may occur once or twice and never again, but is still one of the most common reasons for which hysterectomy is recommended. Seventy-six percent of all hysterectomies are performed for suspected cancer. Cancer of the uterus is confirmed in only four percent and cancer of the ovary in less than one percent. It hardly justifies performing a hysterectomy for suspected cancer in seventy-six percent.
Posner: What are the commonly available treatment options for the plethora of conditions that women are being asked to deal with via hysterectomy? Are there some viable treatment options that might put off the hysterectomy or is hysterectomy an emergency procedure?
Coffey: Hysterectomy is rarely an emergency procedure. It is rarely a life-saving procedure. Endometriosis is generally treated with hormones, which will cause a woman to stop menstruating. She'll become anovulatory and not produce estrogen. They are very potent hormones. They can't be used for more than a year— that would be the absolute longest-after which there is often a rebound effect, so that the condition for which hormones were taken is really much worse after she stops taking hormones. She's not told some common sense advice, which is if this is estrogen-dependent and you eat a lot of poultry or you eat a lot of meat which is fattened with estrogen, you may in fact be just eating something that's causing this condition to become much worse. She's not told that she will not die from this condition, although it is painful, it is not something that's life-threatening. And she might, if she knew what the after-effects of the surgery were, choose to simply live with the condition, put up with having pain, even severe one or two days a month and know that at menopause it will spontaneously resolve and not be present any longer.
Posner: It's interesting that often women aren't told this. It kind of reminds me of Dr. Robert Mendelsohn's book, Malepractic, where he's got a chapter outlining that, and I wonder if you have any ideas why that type of information, at least frequently, is not communicated to the woman.
Coffey: Well, I think there are several reasons, and it's a fairly complicated issue. I think one of the reasons is that most gynecologists are really ill-informed. They are not taught in medical school anything about nutrition. They really don't know very much and they don't seek that information. It's not their orientation. It's not what they're trained to do. They're really surgeons and I don't think that most women, and the public in general, think of a gynecologist as a surgeon. They are, first, surgeons and they are taught to remove organs. That's what they do. And I would recommend to anyone who is advised to undergo a hysterectomy for any condition that is not absolutely life-saving to certainly get a second opinion and don't get a second opinion from a general gynecologist. Get a second opinion from a fertility specialist who is trained to preserve and reconstruct organs, if that should be necessary, and certainly find out what nutritional options you have to. do something about improving your general diet. Find out if you have a deficiency that may be contributing to the condition that you have. Find out if you're eating foods that may contribute to worsening your condition. Posner: How does pregnancy affect endometriosis?
Coffey: Pregnancy may help endometriosis to resolve for a short period of time. It's a very short period of time. Following the birthofachild.it may, in fact, proliferate far more than it did before a pregnancy. It's really a"Catch-22" disease because a woman with endometriosis often cannot become pregnant because endometriosis may infiltrate the tubes and the ovaries.
Posner: Are there treatment options for fibroids or the irregular bleeding that you see in some women that you say cause a hysterectomy?
Coffey: Again, fibroids are stimulated by estrogens. So, certainly, if you have fibroids the first thing you would want to do is eliminate anything in your diet that stimulates estrogen production. True hemorrhaging is rare. If the fibroid is large enough to press on other organs, you may want to consider having just the fibroid removed, in which case, you would certainly want to seek the opinion of someone who performs a lot of myomectomies. Myomectomy is just removal of the fibroid, leaving the uterus intact. Doctors who perform the most myomectomies are fertility specialists.
Posner. You mentioned to eliminate the substances which would stimulated estrogen. Can you go over those?
Coffey: Animals that are fattened on estrogens. That would eliminate most poultry and most meat unless you are able to obtain poultry and meat that is from a helath food store. Those animals were organically fed.
Posner: For those of you just tuning in, this is the Health Connection on 91 FM. I'm Dr. Howard Posner. Tonight's guest is Ms. Nora Coffey. Ms. Coffey is Founder and President of the HERS Foundation. That's the Hysterectomy Educational Resources and Services Foundation, and she's got a background in biology, chemistry and psychology. If you have any questions for her regarding hysterectomy and how to avoid it or what the indications might be, you can phone in at area code 215-923-2774. Just briefly, do you want to mention the Hysterectomy Conference coming up in the beginning of November.
Coffey: The Second Annual Hysterectomy Conference will be held on November 3, at the Sheraton at 36th and Chestnut at 8:30 in the morning until 4:15. Our keynote speaker is the Chair of the National Women's Health Network, Sybil Shainwald, and in the morning we'll be having a panel discussion of the options and treatment for pelvic disorders, sex after hysterectomy, depression, and malpractice. In the afternoon, the surgical procedure will be discussed. The surgical procedure itself is often not understood by women who undergo a hysterectomy. Fifteen, twenty years after the surgery, most women do not know exactly what has happened to them. Hormone substitute therapy will also be discussed. And we say substitute therapy, because indeed, you do not replace those hormones—that is impossible. You take a substitute which does not act or react in your body the same as the natural substance that your body produced. Posner: What are the common after-effects of a hysterectomy?
Coffey: Bone and joint pain, which can be quite severe and debilitating, insomnia, memory loss, loss of physical sexual feeling, and loss of libido. Memory loss is quite striking.
Posner: Why would they have a problem with memory?
Coffey: There is a neurological deficit that occurs after a hysterectomy, more often when the ovaries are removed than not, because the hormones produced by the ovaries do affect the brain.
Posner: What percentage of women would get neurologic deficits, or memory problems?
Coffey: In women whose ovaries are removed?
Posner: Yes.
Coffey: That happens to most women whose ovaries are removed.
Posner: Most women?
Coffey: That's right.
Posner: What are methods of dealing with this situation?
Coffey: Unfortunately, hysterectomy can only be done; it cannot be undone. There is no magical answer. There is no panacea. There is really no way to essentially make it better. What you can do is learn to cope with some of the symptoms. I have learned considerably more from women that I have counseled in the past two years, and I have counseled about 5,000 women, than I have from anyone else about how to cope with these after-effects. Vitamin Bl can give quite good results with memory loss. Vitamin E can be very helpful with hot flashes and both Vitamin E and Bl help somewhat with insomnia, although that remains a significant problem for most women. Oil of Evening Primrose comes up again and again. Women tell me that really helps them with the way they feel in general. Just an overall more or less quality of life feeling. Mood swings are very common after a hysterectomy. The loss of hormones causes mood swings that can be very dramatic and Oil of Evening Primrose seems to help that a great deal. In terms of diet, I have not heard of anything that is particularly helpful. Eliminating coffee helps. Both caffeine and alcohol cause hot flashes and it takes very little alcohol to cause a hot flash.
Posner: Well, often alcohol has fairly high levels of estrogen, which many people are not aware of.
Coffey: And I was not.
Posner: Frequently, the yeast—the Saccharomyces yeast—which is used in the fermentation process, produces estrogen in the fermentation and that shows up in significant levels, particularly in beer. It seems like some of the problems greatly outweigh the treatment methods that are available. In other words, the problems are quite large after hysterectomy in many women. So, what I'm going to ask you now is let's say that we have a 30-year-old woman or a 20-year-old woman or a 50-year-old woman, who comes across an enthusiastic obstetrician or gynecologist and is told, "We have got to get that uterus out. You really don't need it any more. You have endometriosis, or you have got a fibroid. This is the best treatment. How can a woman deal with that— protect herself from being rushed into a hysterectomy?
Coffey: First of all, I think when going to a gynecologist's office, and probably to any doctors office, it is a good idea to take a friend. You often don't remember accurately what has been said, particularly if it is news you don't want to hear and you are not expecting to hear, such as "You may need a hysterectomy." I would certainly—no matter what is suggested— want some references. Any doctor that is suggesting a surgical procedure to you ought to be able to provide you with reading material or a suggestion of reference material. You should find out how to use your local medical library. There is a lot of good information. It is really not very hard to find and they are open to the public. You can walk in and ask a medical librarian to steer you to the right place to find the information that you are seeking. Information is really your best protection. You may find that some of it is hard to get through. It is a little bit hard to understand. There is generally a summary and abstract in the beginning that will give you some conclusions that are really important. Wait. Do not do anything immediately. Think about it. Get another opinion, but do not get it from the same institution.
Posner: Might it ever pay to go to a physician who is not a gynecologist, not a surgeon, to find out about alternative modalities in dealing with the problem? In other words, kind of what you said before was, these people are trained to do surgery, if I read you correctly.
Coffey: That's right.
Posner: Are there other people who might look at it differently, who might try and help protect the woman from surgery rather than nudge them into surgery.
Coffey: Well, unfortunately, we are taught in this country to think of our bodies in such a way that if anything unusual happens in our bodies we are trained to think of it as a disease. You either have it removed or you take a drug, which may cause some other problem in your body. If you had a lump on your foot you would not expect to have your foot amputated. You would expect to find out what was causing it, hopefully do something about it and have the lump disappear. You would not just have your foot amputated. It is a very similar thing with hysterectomy and you should find out whatever you can about the disease that you have; what can you do, first of all nutritionally; anything that is not invasive that can improve the quality of your life and, hopefully, resolve the problem.
Posner: O.K. let's go to our first listener phone call.
Coffey: Yes, hello.
Posner: Hi, you are on the air.
Caller: O.K. I am interested in how the removal of the uterus affects a woman's sexual pleasure. You mentioned loss of sexual feeling. Can a woman still experience orgasm?
Coffey: Well, of the women that I have counselled in the past two years and there have been about 5,000 women, loss of sexual feeling has occurred in all of them, and that is regardless of whether the ovaries are removed. That does not mean that there is absolutely no sexual feeling for everyone. Some women have a slight sexual feeling. Orgasm, generally, does not occur. I think you have to consider what sexual feeling was like before surgery and if you would use the scale of 0-10, if sex was a 10+ before, it is likely to a 0 or 1 after. If sex was a 1 before, you may not notice much difference.
Posner: Thank you for calling with that question. Hi, welcome to 91 FM.
Caller: I have a question. My sister had endometriosis and they removed one ovary and the doctor suggested that if she wanted to have a baby, have it right away. She seems to be having a hard time. And I was just wondering, what are her chances of getting pregnant if she has one ovary missing. And what are her chances of the endometriosis recurring in the other ovary?
Coffey: Well, of course, it is very possible if the ovary is functioning that it is producing enough hormones that she may be able to get pregnant. It is also possible that the ovary is not functioning. There may have been an interruption to the blood supply to that ovary during the first surgery, and the best way to find out is have a hormone level test done to determine exactly what her hormonal status is.
Posner: Thank you for calling with that question.
Nora, alcohol is a substance which many people abuse, unfortunately, and as I mentioned before, there are some natural estrogenic compounds in alcohol. Do you see many women who have had hysterectomy turn to alcohol to help them with their insomnia or to try and overcome their depression? Is that something that you commonly see in the women you counsel?
Coffey: Well, I think that certainly a glass of wine before bed is something that a lot of women turn to. I would not say that, in any way, they are headed toward .alcoholism as a result of it. And I do not know how many use it for depression. One could only guess. Depression is a major component of the symptoms experienced after hysterectomy. I think that is not too surprising when you consider the array of symptoms for a woman who was essentially healthy but may have had bleeding between periods, for a woman who was healthy that may have simply had pain once a month, who suddenly has i loss of stamina, a loss of vigor, a loss of sexuality, insomnia. In essence, a rapid onset of aging—who would not be depressed?
Posner: So I take it, your feeling is a woman should, at all costs, try and avoid a hysterectomy unless it is an absolute necessity.
Coffey: Yes, absolutely.
Posner: And, by the way, I was not suggesting that anyone use alcohol to help them with sleep, since it actually causes a much less restful sleep. It affects the brain waves in a negative way and the sleep pattern is disturbed and also as a treatment for depression it fails, because alcohol itself is a depressant.
Caller: I would like to know whether or not women who have a subtotal hysterectomy— that is when the ovaries are not removed—if they go into an earlier menopause than those who have no surgery at all.
Coffey: About 35% of all women who undergo a hysterectomy whose ovaries are intact still undergo an instant surgical menopause. The blood supply to the ovaries may be interrupted at the time of hysterectomy, because they are clamped during surgery to prevent bleeding and that blood supply is not always reestablished.
Caller: I would like to ask since your guest says that poultry and beef has so much hormones — you know, estrogen— would vegetarianism be a good idea? If so, what would be good to replace the iron that would not be gotten from beef?
Posner: Well, there is plenty of iron in the dark green, leafy vegetables—that is one good way of getting an adequate amount of iron. Also, many vegetarians will take nutritional supplements. They may take Vitamin B-12 and Iron. They may take a multivitamin with a B-Complex. So, if there is any doubt, however, ore can take an Iron tablet daily. After a hysterectomy, the taking of Iron is no longer necessary in the vast majority of cases, since there is no monthly blood loss. Very interesting. This brings up the whole subject of why women get much less heart disease than men until the time of menopause, and then afterwards they catch up with men as far as the rate of heart disease. And for many years, it was thought that this was related to the hormonal changes that occur, and in fact that is not the case. The Framingham study shows that if you take very young women and do a hysterectomy but leave the ovaries behind, and they have basically the same hormonal balance, that these women start developing heart disease as if they were men. And the theory that was put forth is that the monthly iron loss—the monthly blood loss with the concomitant loss of iron—is perhaps, beneficial. And if you look at blood donors, for example, blood donors have much less heart disease than non-blood donors, and this would, once again, support that theory. That is very, very interesting. That it seems not to have to do with hormones but with the iron loss and the blood donors supporting that.
To be continued in Vol., 3 No. 1
LETTERS:
I am 52 years old and married. I had a hysterectomy 15 years ago. My ovaries were not completely removed, I still have a piece of an ovary.
In the past 4 years, I cannot reach a climax during sex or masturbation. For about a year, I have no desire for sex. No feeling. It is affecting my sex with my husband.
I take estrogen. 1.25 mg. I have asked my gynecologist about it, and she said hysterectomy does not effect sex at all.
How safe is testosterone? How can my sex life be restored? It is very frustrating at times.
Fs it true your sex life is not the same after a hysterectomy? (It was good before). Would a sex therapist help?
Philadelphia, PA
I am 42 years old and trying to recover from a total hysterectomy performed 7 years ago. Having suffered weight gain, migraines, joint pain and swelling, constipation, hot flashes and insominia and the fear of osteoporosis. I am constantly trying to improve my situation by diet, exercise, estrogen and vitamins. I investigate every program, clinic and reading material on helping with problems after a hysterectomy. Nothing helps. I would greatly appreciate any information you could send me.. I discovered you in Jane Fonda's book "Women Coming of Age." Thank you. Casper, WY
I am glad I talked to you over the phone. Now I feel I am not the only one going through this "hell." The more I think about all this, the more I want to do all I can to stop this horrible crime.
It's beyond me how this could keep going on without anyone stopping these doctors. Like I said to you, I was hurt so much already, so no matter what I do, no
one can hurt me anymore. I am willing to do as much as I can to stop all the things the doctors are doing to women. Please let me know what ! can do to help you in any way.
Also let me know when you are having the conference—I would like to attend. I would also like to do something in my area.
Hope to hear from you soon.
Chicago. IL