Dearest: Lise Cloutier-Steele is a communications specialist, professional writer and editor. She is the author of "Misinformed Consent: Women's Stories About Unnecessary Hysterectomy" (by nextdecade.com) -- a book to help women and their significant others make an informed decision about hysterectomy and ovary removal. Lise, herself, had a traumatic experience with hysterectomy and is very involved in sharing information about the important topic of unnecessary hysterectomy. Lise is the recipient of a Canada 125 Award in recognition of a significant contribution to the community and to Canada and has appeared on Canada AM, the Women's Television Network, The Phil Donahue Show, The Body and Health Show, and several other media to talk about the important topic of unnecessary hysterectomy in North America. Mary Ann Wyatt, collaborated on the writing of the book, sharing her own hysterectomy experience and expertise as a researcher in molecular biology and electrochemistry. Mary Anne's career has embraced a passion for scientific research and a deep interest in the betterment of her community. After six years of researching molecular biology at MIT, Mary Anne has worked extensively in the private sector as a chemist in the tangential fields of physical and inorganic chemistry and electrochemistry. It's a pleasure to welcome you both to Power Surge, Lise and Mary Ann. I hope it's all right if we call you by your first names. We're very informal in Power Surge. Lise Cloutier-Steele: Please do. Mary Ann Wyatt: Yes, thank you. Dearest: Lise, I realize you went through a difficult experience with your hysterectomy, but what motivated you to write "Misinformed Consent" and how did you go about finding other women to contribute their stories? Lise Cloutier-Steele: At first, I was only researching the symptoms for myself. I wanted to understand what was happening to me, and to do that, I connected with other women and later decided that a collection of stories from women who underwent the surgery might be very helpful to others contemplating hysterectomy. Dearest: Similar to how Power Surge networks except in a different medium. Lise, what was your experience with your hysterectomy? Lise Cloutier-Steele: I was talked into having one, to spare me from cancer. At first, they thought I might have endometriosis. No tests were taken, and it was recommended to rid me of my problems with painful periods. I don't have that problem anymore, but I ended up with more unpleasant side effects and difficulties, especially with sexual dysfunction. Dearest: Was there one most common tale, nightmare, traumatic experience shared by the women who contributed to the book? Lise Cloutier-Steele: I think the common thread is that the women were not informed about any of the consequences of the surgery and that they found it difficult to get help after the surgery when various symptoms start to occur. Mary Ann Wyatt: Loss of sexual libido is the norm post-hysterectomy. There is a general rapid aging and deterioration of health, like bone loss. Bitsy2: I had a oophorectomy 7 years ago. Now, no desire for sex at all. Lubricants don't help. I'm on natural estrogen and progesterone. What have you done and do you have any suggestions? I feel so sorry for my husband, just exactly what you are saying. Lise Cloutier-Steele: I feel sorry for my husband, too. Bitsy2: What do you do? Lise Cloutier-Steele: I did try to use testosterone cream to spark sexual desire but I ended up with unwanted side effects like hair growth on my inner thighs and on each side of my face, so I stopped the treatment. Bitsy2: What happened to you? Because I tried it to, but had strong tingling in breasts for 2 weeks later. Lise Cloutier-Steele: Sexual desire is very hard to put back once the ovaries have been removed. Bitsy2: This is so upsetting. Lise Cloutier-Steele: Yes, it is. Mary Ann Wyatt: Some women have found help from testosterone, titrated or carefully adjusted. Many prefer a cream for skin absorption. Susan Rako is a good resource for help. Dearest: Yes, she's been a frequent guest in Power Surge. Mary Ann, you make a powerful statement in the introduction. "How far have we really come today? Medicine continues to describe normal hormonal fluctuations, such as PMS as psychiatric disorders, or to treat them with surgery. Society condones epidemic numbers of hysterectomies, and allows doctors to routinely remove healthy ovaries for absolutely no medical reason." I have fought similar battles via Power Surge with doctors who know nothing more than to give any perimenopausal woman Prempro and other synthetic hormones, or drugs to shut them up. Today, if it's not SSRI's (anti-depressants), for which we have no knowledge of long- term effects, now the "popular" drug is anti-epileptic medicine. Why on earth a woman would need anti-seizure medicine for menopausal symptoms is beyond me entirely. What do we have to do to enlighten the medical profession who insist on shutting us all up and attributing everything we feel to female hysteria? Mary Ann Wyatt: Doctors will not change until we demand that we have alternatives. Hysterectomy is not reversible. Debrikkia: I had a complete hysterectomy 13 years ago. My Doctor was sure I had endometriosis, although I showed no signs. He "talked me into it" by stating that I must be tired of periods, and that I did not want to have any more kids, so why not? I had my GP assist(he was against the hysterectomy) and as it turned out, I did have endometriosis attached all over the place which made for a long hard recovery--however, I have since learned that it still may been necessary. Any thoughts on this? The only information I was given was that I would take this little estrogen pill, and forever be grateful to my wonderful doctor! Mary Ann Wyatt: Many of the mental symptoms like depression are hormone-sensitive and a simple adjustment of supplementation may help. Lise Cloutier-Steele: Endometriosis is among the top ranking indications for hysterectomy and women who suffer from this terrible disease have a tough time. Dr. West (in his book The Hysterectomy Hoax) says that hysterectomy is not necessary in the case of endometriosis and that there are techniques and other drug treatments that could take care of the endometrial implants without having the remove the reproductive/sexual organs. You would have to discuss this further with another doctor to see if your surgery was essential or not. Annfonfa: I know about a natural kiwi-based product that can lubricate amazingly well- SYLK. When my sister had her hysterectomy, she told her doctor NOT to give her estrogen but they secretly gave her an injection. As her sister, a breast cancer survivor, this could have been a problem as it promotes breast cancer. Lise Cloutier-Steele: I've heard of many women who have been given an injection after the hysterectomy procedure has been completed. It is done so that the patient does not feel the hot flushes right away, but in the case of a patient whose sister had breast cancer, I agree, it could be dangerous. Loon: What is an alternative instead of Premarin? Lise Cloutier-Steele: Instead of Premarin, I use natural compounded hormones. It seemed logical to me to try and put back in my body what it used to do on its own. Supplementing with estrogen only made me gain a lot of weight and I was afraid of the breast cancer risk so I opted for what seemed like a safer alternative to me. Mary Ann Wyatt: Look for a doctor who can proscribe bio-identical hormones, recognized by a human - not a Premarin pill. There are good resources on Power Surge. Lise Cloutier-Steele: Misinformed Consent also lists many compounding pharmacies and contacts to help women connect with a pharmacist who could help them with a tailor-made prescription. Dearest: Yes, we have our resident natural pharmacist, Pete Hueseman, R.Ph, PD, who's been with Power Surge for 8 years and is an expert in the area of bioidentical hormones. SunFlower2002: I am surgically menopausal - no uterus and no ovaries. Lately, I have had pain on my left hand pelvic area - I think they are adhesions caused by two surgeries done in 2.5 years. Sometimes the pain is unbearable and it feels that my entire side is being pulled out. What can I do about this? I certainly don't want to go under the knife again!! I have your book; unfortunately, it came out too late for me BUT it is making its way amongst other women who I have come to know and are thinking about having a hysterectomy. GREAT BOOK! Lise Cloutier-Steele: Many report pelvic pain after surgery. Mary Ann Wyatt: Yes. There are specialists in pelvic pain and a couple of good books on it. Look into the International Pelvic Pain Society on the web. for references in your area. Dearest: Can you briefly explain (although I know it's difficult to be brief) the differences between an oophorectomy, myomectomy, uterine fibroid embolization and complete hysterectomy? Lise Cloutier-Steele: A myomectomy is a surgical procedure to remove fibroids. The surgeon removes the fibroids only, leaving the reproductive organs intact. Not all gynecologists are trained in this procedure which is why they often offer the hysterectomy procedure instead, in that it may be the procedure for which they are more comfortable at performing. The uterine artery embolization is also a surgical procedure to remove fibroids. It is performed my interventional radiologists, not gynecologists. Mary Ann Wyatt: There are many types of myomectomy, for different tumors and they are usually done by specialists in preservation, or fertility doctors. Lise Cloutier-Steele: Oophorectomy is the surgical removal of the ovaries. Dearest: How successful has the uterine artery embolization been? I know it's not performed by that many doctors. Lise Cloutier-Steele: The uterine artery embolization is a fairly new procedure. As I mentioned earlier, it is performed by interventional radiologists and gynecological surgeons would have to refer a patient to the IR for the UAE procedure. Dearest: Why would a radiologist perform such a procedure? Mary Ann Wyatt: For many women, it is very successful and research is perfecting it all the time. You need a specialist in this area in resources for fibroids. Dearest: And a radiologist is a specialist in this area? I'm just trying to get educated. I didn't realize that fell into the realm of a radiologist's area of expertise. Mary Ann Wyatt: A radiologist must visualize the fibroid in order to inject the particles into the uterine artery, to block its blood supply. CathyJ: Could you please tell me if menopause symptoms ever go away on there own without taking anything for it? Lise Cloutier-Steele: If they are symptoms of surgical menopause, they may not. A lot of women ask me how long these symptoms last. My research concluded that this is a lifetime deal. I know that if I stop taking my natural compounded hormones, my symptoms always come back with a vengeance. Mary Ann Wyatt: I have heard that they do, but not after hysterectomy. Dr. Susan Love is a good source for this sort of information, and Dr. Winnifred Cutler - both have web sites. Lise Cloutier-Steele: I can still flush and have night sweats while I'm on the nhrt, but without anything, it would be unbearable. Dearest: Susan Love has also been a frequent guest in Power Surge :) I think the same can hold true for women going through natural menopause as well - that they never quite get over their symptoms even when they're postmenopausal for years. Peggy: My sister had a lapascopic surgery where they removed 2/3 of a fibroid and left the rest in. Will the remaining part of fibroid grow and continue to give her problems? They said they could not remove all of the fibroid without doing a hysterectomy. Your thoughts please. Lise Cloutier-Steele: My mother gets recurring symptoms and she is 74, never had a hysterectomy. Mary Ann Wyatt: It would help to get another opinion. You can make lifestyle changes that discourage fibroid growth - an estrogen-dependent tumor. Lise Cloutier-Steele: If she takes estrogen, it may grow bigger. Loon: I am in hormone withdrawal terribly after coming off Premarin. My doctor has put me on Clonidine to try, as the hot flashes come from my toes right up my body and last 5 + minutes. Is this a good choice to try or would you suggest something else? Please name some NHRTs. Dearest: Let's clearly state this, please. That is an unmitigated fact? Estrogen can cause fibroids to grow, yes? Lise Cloutier-Steele: NHRT comes in a cream that you can rub into your skin. Some women take a combination of tri-estrogen (3 types of estrogens) progesterone and testosterone. Others apply in separate creams. Yes, fibroids are estrogen dependent. Mary Ann Wyatt: Yes - estrogen causes fibroids to grow. Eat low on the food chain and less meat - go organic if you eat meat. Without a hysterectomy, one might be low in progesterone receptors and need to supplement that. See a good endocrinologist. Dearest: And a woman with fibroids should not take even naturally compounded hormones? Lise Cloutier-Steele: We don't have the studies on natural compounded hormones, so we don't know if it would be perfectly safe for a woman with fibroids. Annfonfa: I have used Traditional Chinese Medicine for breast cancer. And acupuncture completely reduced period cramps 11 years ago. I am told it is excellent for "female troubles". Lise Cloutier-Steele: Yes, I believe it would be helpful. Many go that route with great success. JuscoJoe: Why do so many women experience urinary incontinence post hysterectomy? Lise Cloutier-Steele: I have that problem. One doctor explained that it makes sense to experience stress and urge incontinence post op because the bladder has lost some of its support when the reproductive organs are removed. Mary Ann Wyatt: The pelvic organs are a congested area. Men have similar problems with prostate surgery. It is important to have a very good surgeon and to avoid residents, who are much less experienced. Part of a hysterectomy involves a separation of the bladder from the cervix. If one retains their cervix, the risk of incontinence is reduced. Dearest: What was the age of the youngest and oldest contributor to your book? And, is it my imagination, or are many much younger women going through hysterectomies today? Lise Cloutier-Steele: The youngest was in her early 20s when she underwent an unnecessary hysterectomy. The oldest may be in her mid to late 50s. Cutler talks about women under 40 undergoing the procedure unnecessarily. CathyJ: I had a hysterectomy 3 years ago and every since then I have had horrible pain off and on my lower left abdominal area, could that be caused by scar tissue from the surgery, or if not scar tissue do u know why I may be having this? My doctor never had me come back for a 6 week check up, said it was not important. Lise Cloutier-Steele: Scar tissue can cause a lot of problems. You would definitely need to find a specialist willing to find the source of your problem. Mary Ann Wyatt: You may have a nerve injury. There are good physical or pelvic floor therapists who can determine if you have adhesions or if it is visceral or nerve. Muscle or soft-tissue manipulation can reduce or even eliminate the pain. Loon: I'm in terrible hormone withdrawal after coming off Premarin and need something to ease the hot flashes naturally, any suggestions? What about Black Cohosh? Lise Cloutier-Steele: I tried that and it didn't work for me. I suffered terrible withdrawal from Premarin and I can empathize. I tried other forms of natural products from the health food stores, but they weren't potent enough to keep the flushing at a minimum. Mary Ann Wyatt: We need good endocrinologists to work with us as partners. A lot of it is trial and error. Lise Cloutier-Steele: It sure is! Loon: What about Clonidine? Dearest: Loon, have you tried Revival soy? Loon: I have tried Soya milk, and it helped a bit. Dearest: Loon, Email me at Dearest@aol.com for information about methods of treatment. Soy milk isn't anything like Revival soy. SuperGrammieJean: Why do women who have not had a hysterectomy have stress incontinence and will taking soy (Revival) help that? Lise Cloutier-Steele: I don't know enough about soy to respond. Mary Ann Wyatt: You can try soy and natural yam cream progesterone. You can also seek a compounding pharmacist. It varies with the individual. Dearest: Revival is excellent for menopausal symptoms, but I don't believe it's helpful for incontinence, to be very honest. Email me, SuperGrammie, at Dearest@aol.com and I'll send you some additional information as to where to find it on the web site. Debrikkia: Since I had so much scraping done around the bladder area, and problems with infections after my hysterectomy--could that have something to do with the problem of incontinence that I've had ever since? And could Kegels still help? Dearest: There's a great article explaining Kegel exercises in Power Surge's Educate Your Body area. Mary Ann Wyatt: Yes, it could. Kegels will strengthen the muscles surrounding the bladder. Rhonda Kotarinos, a pelvic floor therapist in Chicago is a good resource. Annfonfa: I have found cocoa butter can reduce scar tissue (rub on area at least three months time) OneSister: Your book will make women think twice but what can be done to wake up the medical profession? Women have to research and find alternative help rather than hysterectomy rarely do doctors promote new techniques. Lise Cloutier-Steele: I hope so. That was the idea. If we insist on more honest care, perhaps we can effect change. Doctors need to know that our body parts are not dispensable. Debby: My doctor has found a 4cm growth outside of the uterus attached to the uterus and cervix and the doctor indicates that a hysterectomy... will be the only way to relieve the pain and discomfort would you agree? I am very frightened as I must decide on this operation soon. Lise Cloutier-Steele: If you don't have cancer, you have lots of time to make an informed decision. I would look for a surgeon willing to preserve your organs. Mary Ann Wyatt: The great majority of fibroids (the growth outside the uterus) are benign. Again, you should look for a doctor keen on preserving organs usually a fertility specialist. A lot has to do with demand and with cost. Insurance companies control what a hospital does, so we must insist on preservation of our organs. Is your surgery for a life- threatening problem? Again, you need a specialist. I have known several women with very difficult fibroid growths and they were successfully removed by skilled experts in myomectomy. We need informed choices. Leadfootlily: My pain was caused by my ovaries. I knew that long before the doctor did. My ovaries are gone and I have absolutely no regrets! OneSister: Did you find many positive hysterectomy stories while doing research? Mary Ann Wyatt: Not if you value your sex life. Lise Cloutier-Steele: Not many. And I'm of the opinion that women need all of their body parts for it to function efficiently. Lise and Mary Ann, the work you're doing is very commendable. There are too many hysterectomies being performed unnecessarily. Thank you for sharing your experience and knowledge with us on this important subject. I strongly recommend "Misinformed Consent" (next decade books) to anyone, not only women who are anticipating, or have had hysterectomies. Disclaimer: Every guest in Power Surge is a highly respected professional whose opinions are his/her own. An appearance in Power Surge does not constitute an endorsement of a guest's views. None of these transcripts may be reprinted or reproduced without the express permission of Power Surge™ and the respective guest. Read other transcripts by returning to the Library. Dearest aka Alice Stamm Power Surge Founder, Facilitator, Host Copyright©1994- by Power Surge. All Rights Reserved.