Hysterectomy Support Group
A hysterectomy is the surgical removal of the uterus, usually done by a gynecologist. Hysterectomy may be total (removing the body and cervix of the uterus) or partial (also called supra-cervical). Although there are conservative alternatives, hysterectomy is performed for uterine fibroids, pelvic pain, pelvic relaxation, heavy or abnormal menstrual bleeding, and cancer.
Since so many doctors recommend hysterectomy for conditions that could be addressed more conservatively, I thought I'd relay my hysterectomy experience in hopes it will help other women.
First some statistics -
- Hysterectomy is the #1 non-obstetric surgery
- There are approximately 620,000 per year in the U.S.
- Doctors, hospitals and pharmaceutical companies make $17 Billion per year from hysterectomies
- 1 in 3 women has a hysterectomy by the age of 60; 1 in 2 by age 65
If you think about it, do this many women really "need" a hysterectomy? According to the HERS Foundation (www.hersfoundation.com), 98% of hysterectomies are unwarranted. According to Dr. Oz, 80% are unwarranted (still a huge number that aren't needed).
Now for my story (sorry it's so long):
At age 49, I had no history of female problems with the exception of secondary infertility. I was still having normal 28-30 day cycles, no abnormal bleeding, no pain, nothing unusual as was the case my whole life.
I had one day of unrelenting pain that prompted me to go see my ob/gyn, the one who I'd gone to for 20 years and who successfully treated me for secondary infertility and delivered my daughter. So I obviously respected and trusted this guy. He discovered a cystadenoma (these are usually benign but can be malignant). He was adamant that I needed a hysterectomy and oophorectomy (ovary removal). I asked several questions and he kept answering that "everything must go." He also told me he wanted me to see an oncologist but there probably wouldn't be time as he scheduled surgery for the following week. I did get in to see the oncologist and discovered only after getting my records a year after surgery that he recommended removal of the ONE ovary only. This was never communicated to my husband and me. There were also significant errors in the oncologist's records including that my sister had ovarian cancer when I have no family history of ovarian or breast cancer. My ob/gyn got a copy of the oncologist's recommendation yet he chose to gut me versus remove only the one ovary.
I started on an estrogen patch 6 weeks post-op even though I wasn't experiencing hot flashes or night sweats. Within 4 months post-op, I aged rapidly due to major hair loss, texture changes and graying, and collagen loss causing thin and sagging skin with visible veins. I suffered from depression, anxiety, insomnia, irritability, blunted sense of taste and smell, loss of appetite, inability to concentrate, inability to socialize, bowel problems, loss of tactile sensation throughout my body, loss of libido and response (I have very little feeling in that area), and an overall loss of joy and vibrancy. My strong feelings of love for my husband and children were (and still are) blunted. This has been the most devastating of all.
After 15 months on estrogen that wasn't meeting my needs (although doctors told me it should be), I finally settled on one that is working. This has improved most of my symptoms but my joy, vibrancy and loving feelings are still gone. I was so energetic and full of life before I was needlessly castrated (yes, ovary removal IS castration). And my hair has never stopped shedding and it's been 4+ years.
The other devastating consequence is the effect on my physique. The severing of the ligaments to remove the uterus causes the spine to compress and the abdomen to protrude. I always had a flat stomach. I now have the post-hyst "potbelly" which is very depressing. And I know it only gets worse over the years.
My doctor also failed to tell me that I'm at increased risk for all-cause mortality with heart disease risk 7x that of an intact woman (3x if just the uterus is removed). Other increased risks are osteoporosis (even when the ovaries are kept), bladder and bowel prolapse and incontinence, colon cancer, lung cancer and dementia (there may be others). Be aware even if you keep your ovaries, there's a 35-40% chance they'll fail prematurely (which can also happen with tubal ligation) thereby increasing your health risks.
None of the women I've conversed with were given all the facts about the consequences of hysterectomy. I only discovered these facts post-op primarly from the HERS Foundation at www.hersfoundation.com. They provide resources for treatment alternatives and may even be able to provide the name of a doctor who will treat you while still preserving your organs.
There are also some books about hysterectomy alternatives. The Hysterectomy Hoax by Dr. Stanley West is supposed to be a good one.
I hope this post is helpful.
First some statistics -
- Hysterectomy is the #1 non-obstetric surgery
- There are approximately 620,000 per year in the U.S.
- Doctors, hospitals and pharmaceutical companies make $17 Billion per year from hysterectomies
- 1 in 3 women has a hysterectomy by the age of 60; 1 in 2 by age 65
If you think about it, do this many women really "need" a hysterectomy? According to the HERS Foundation (www.hersfoundation.com), 98% of hysterectomies are unwarranted. According to Dr. Oz, 80% are unwarranted (still a huge number that aren't needed).
Now for my story (sorry it's so long):
At age 49, I had no history of female problems with the exception of secondary infertility. I was still having normal 28-30 day cycles, no abnormal bleeding, no pain, nothing unusual as was the case my whole life.
I had one day of unrelenting pain that prompted me to go see my ob/gyn, the one who I'd gone to for 20 years and who successfully treated me for secondary infertility and delivered my daughter. So I obviously respected and trusted this guy. He discovered a cystadenoma (these are usually benign but can be malignant). He was adamant that I needed a hysterectomy and oophorectomy (ovary removal). I asked several questions and he kept answering that "everything must go." He also told me he wanted me to see an oncologist but there probably wouldn't be time as he scheduled surgery for the following week. I did get in to see the oncologist and discovered only after getting my records a year after surgery that he recommended removal of the ONE ovary only. This was never communicated to my husband and me. There were also significant errors in the oncologist's records including that my sister had ovarian cancer when I have no family history of ovarian or breast cancer. My ob/gyn got a copy of the oncologist's recommendation yet he chose to gut me versus remove only the one ovary.
I started on an estrogen patch 6 weeks post-op even though I wasn't experiencing hot flashes or night sweats. Within 4 months post-op, I aged rapidly due to major hair loss, texture changes and graying, and collagen loss causing thin and sagging skin with visible veins. I suffered from depression, anxiety, insomnia, irritability, blunted sense of taste and smell, loss of appetite, inability to concentrate, inability to socialize, bowel problems, loss of tactile sensation throughout my body, loss of libido and response (I have very little feeling in that area), and an overall loss of joy and vibrancy. My strong feelings of love for my husband and children were (and still are) blunted. This has been the most devastating of all.
After 15 months on estrogen that wasn't meeting my needs (although doctors told me it should be), I finally settled on one that is working. This has improved most of my symptoms but my joy, vibrancy and loving feelings are still gone. I was so energetic and full of life before I was needlessly castrated (yes, ovary removal IS castration). And my hair has never stopped shedding and it's been 4+ years.
The other devastating consequence is the effect on my physique. The severing of the ligaments to remove the uterus causes the spine to compress and the abdomen to protrude. I always had a flat stomach. I now have the post-hyst "potbelly" which is very depressing. And I know it only gets worse over the years.
My doctor also failed to tell me that I'm at increased risk for all-cause mortality with heart disease risk 7x that of an intact woman (3x if just the uterus is removed). Other increased risks are osteoporosis (even when the ovaries are kept), bladder and bowel prolapse and incontinence, colon cancer, lung cancer and dementia (there may be others). Be aware even if you keep your ovaries, there's a 35-40% chance they'll fail prematurely (which can also happen with tubal ligation) thereby increasing your health risks.
None of the women I've conversed with were given all the facts about the consequences of hysterectomy. I only discovered these facts post-op primarly from the HERS Foundation at www.hersfoundation.com. They provide resources for treatment alternatives and may even be able to provide the name of a doctor who will treat you while still preserving your organs.
There are also some books about hysterectomy alternatives. The Hysterectomy Hoax by Dr. Stanley West is supposed to be a good one.
I hope this post is helpful.
Here in the U.S., it's next to impossible to sue someone in the medical profession. And it's also rare that a state's medical board will discipline a doctor. It seems like they only discipline for criminal behavior, e.g., drugs, sexual assault, etc. I have an online friend who's a nurse (who was also needlessly castrated) who sees all kinds of incompetent and/or sociopathic doctors and nurses in her job at a hospital. Yet if they're reported, the hospital either ignores the reports or fires the problem doctor but doesn't report them to the medical board for discipline so they just go elsewhere and continue harming patients. And in some cases, the hospital or insurance company takes action against the person reporting the problematic doctor. Case in point, a doctor who was reported by several other doctors for his carelessness in delivering babies. The hospital failed to take action until a baby's back was broken. It went to court and the doctors that testified against the defendant were disciplined by the insurance company by being moved 300 miles away.
It seems like the buyer has to beware as consumers of medical care just as much as any other good or service!
Regarding your atrophied ovaries, this is not surprising. It seems like poor surgical technique could have caused this but I think it's more your body's individual network of blood vessels that dictates whether or not you'll have blood supply to your ovaries. There's a Dr. Vikki Hufnagel (who was basically run out of California for her stance against uninformed consent of hysterectomies and tubal ligations) who has a diagram of ovarian blood supply at http://tubal.org/VGHPTS.htm.
Are you going to take hormones? I can't imagine living without them but each woman is individual as far as the symptoms and their severity. But loss of ovarian function usually wreaks havoc on your endocrine system.