Removal of one or both ovaries increases incidence of cognitive loss
HERS Foundation said...
This article is soon to be published in the Journal 'Neurology'. Many hysterectomized and castrated women experience memory problems that began after the surgery. Because they are often ridiculed by doctors for connecting their memory problems to their surgery their concerns and experiences are often trivialized by family and friends.
The Real Experts have been telling the so-called medical experts for a century that castration causes memory loss and impaired cognitive function. Doctors tell them their memory loss is because they have a relationship problem with a partner, family or friends. They tell them taking hormones is the remedy. And they tell them they have memory loss because the are depressed.
The loss of memory results in a profound loss of self and identity. Competent, intelligent, dynamic women suddenly have difficulty finding the common ordinary words they know as well as their own names. Thoughts run around the edge of their brains, unable to be retrieved. Most women characterize this tremendous loss as irritating, frustrating, and terrifying. The thing that I always find incredible is the way so many women have learned to cope with this loss by compensating. Sometimes it's a facile changing subject, or with a laugh, "oh, you know what I mean". Sometimes it's like charades. "It's green, it's wood, it has a back, and you sit on it." All the while she's trying to be pleasant and not show how foolish it feels to play a game to get others to guess what is in her head.
Women who experience these problems can use this article to help family and friends understand what is so difficult to comprehend and accept, particularly because it is denied by gynecologists who perform the surgery. Acknowledging the problems caused by hysterectomy is not good for business. Kudos to the authors.
Increased risk of cognitive impairment
or dementia in women who underwent
oophorectomy before menopause
W.A. Rocca, MD, MPH
J.H. Bower, MD
D.M. Maraganore, MD
J.E. Ahlskog, PhD, MD
B.R. Grossardt, MS
M. de Andrade, PhD
L.J. Melton III, MD, MPH
ABSTRACT
Objective: There is increasing laboratory evidence for a neuroprotective effect of estrogen; however,
the clinical and epidemiologic evidence remains limited and conflicting. We studied the association
of oophorectomy performed before the onset of menopause with the risk of subsequent cognitive impairment or dementia.
Methods: We included all women who underwent unilateral or bilateral oophorectomy before the
onset of menopause for a non-cancer indication while residing in Olmsted County, MN, from 1950
through 1987. Each member of the oophorectomy cohort was matched by age to a referent woman from the same population who had not undergone oophorectomy. In total, we studied 813 women with unilateral oophorectomy, 676 women with bilateral oophorectomy, and 1,472 referent
women. Women were followed through death or end of study using either direct or proxy
interviews.
Results: Women who underwent either unilateral or bilateral oophorectomy before the onset of
menopause had an increased risk of cognitive impairment or dementia compared to referent
women (hazard ratio [HR] 1.46;95%CI 1.13 to 1.90; adjusted for education, type of interview, and history of depression). The risk increased with younger age at oophorectomy (test for linear
trend; adjusted p 0.0001). These associations were similar regardless of the indication for the
oophorectomy, and for women who underwent unilateral or bilateral oophorectomy considered
separately.
Conclusions: Both unilateral and bilateral oophorectomy preceding the onset of menopause are associated with an increased risk of cognitive impairment or dementia. The effect is age-dependent and suggests a critical age window for neuroprotection. Neurology® 2007;69:1074–1083
Labels: after effects, alternatives, consequences, dementia, hysterectomy, memory loss, oophorectomy, ovaries, recovery, sex, sexual loss, side effects, support
posted by HERS Foundation @ 11:46 PM
45 Comments
45 Comments:
I was 32 when I had a complete hysterectomy(removal of both ovaries and everything). I have to say this is finally an article that has answered so many questions within my own self. I am now 38 and must say everything is this article is true. I almost wonder if it's my fault too because it was an elective surgery. I actually approached my OBGyn on having a hysterectomy because of a bad case of Endometriosis. I try to rationalize the symptoms I now have vs the horrible pain I went thru all the time every month with Endometriosis. I am a registered nurse so memory issues scare me bigtime but it's a challenge I forge on with. I have memory issues, more depression issues and now see a Psychiatrist not sure if all that is attributed to the hysterectomy but the memory loss I do attribute to the hysterectomy. I've told my ObGyn and primary dr about it and they say it's my hormones and lack of them that are most likely the cause. It's hard to have my family & friends understand and sometimes it causes conflict because I really can't remember something that was just told to me. They just think I'm not paying attention or easily distracted.
Now, I'm not here to detour anyone's decision but knowing I was not going to have children then a hysterectomy seemed to be the answer and I must say my twin sister and mother weren't happy with my decision but honored it. My mother still gets upset knowing I went through with it but doesn't bother me with it anymore. I still wonder if I made the right decision but overall I had to outweigh the pros and cons and I just couldn't imagine having the pain every month that I've dealt with for so many years already for another 30 years so I opted to approach my ObGyn for the surgery. When I was 31 my ObGyn talked to me about the surgery as being so permanant and to really think it over and then we can move on if I decided to have it, so a year later I opted for it because I wasn't going to have a Laproscopy surgery every 2 years to shave out my Endometriosis which would simply grow back. So, basically this boils down to that I do have memory loss, a lower sexual drive, more depression issues. But I also can't tell you not to have this surgery because it's a matter of everyone's individual need. Good luck!!
Thanks for posting your experience with the frustrations of memory loss caused by the removal of your ovaries. HERS receives email and calls every day from women who are coping with the problems of memory loss that are compounded by family members who don't believe it has anything to do with the surgery. Unfortunately this sometimes is expressed by anger, resentment or taunting to "get over it", as though it is merely a bump in the sidewalk a woman could step over to avoid. Hopefully this article will help family and friends be supportive.
Thank you for your input about cognitive impairment from removal of the ovaries. I was 23 yrs. old when I had a complete hystorectomy with both ovaries removed. I wasn't told all the cons of the surgery but it was necessary because of the disease I had. Now I am nearly 52 yrs. old and my memory is fading more and more as time goes on. Not only that, I want so badly to be removed from this earth because I no longer feel "normal" or like a woman in any way. Hormones are not the absolute solution to the problem and something else needs to be done to help us women who have suffered this. It makes me so angry to know I will never be the woman I was meant to be because I was castrated at a very early age. The vaginal atrophy and lack of want for sex is such a devasting blow to the female species when we are the foundation of the generations of this world. I am so glad someone finally is getting these articles published in Neurology. Maybe now, once read by neurologists, we might get some kind of results for relief!
I want to thank Nora and the input of the bloggers. I had a full hysterectomy. Everything is gone! I was tricked by my female obgyn because she knew I was in such pain from another type surgey she said this is all we can do. I was in such pain and she jumped in and took advantage of the situation. One year later I am still in pain, the depression is incrediable and yes I had to change jobs. Trying to maintain this job is very challenging..when ususally it should not be. I wonder if I am going crazy. I can not express enough how this operation has changed me. I used to be a very happy person. Now I just want to sleep and cry. Plus, the pain I am still in. I am holding back my anger for what she did to me and then dismissed me. I tried to make her accountable for what she did and did not give me any INFORMATION to prepare me for what I can go through afterwards. She did not even call afterwards to check on how was I doing. Lawyers do not want to touch a malpractice case. Or at least I can not find one. The lawyers will tell me I do have a case but will not take it on...I believe they think it is not worth it.
Finally, I want to think you all for your imputs. Even though it is a sad, sad situation, I do feel more normal knowing that what I am going through are the side affects of the destructuve surgery that I was not informed.
I appreciate this new information as it explains a lot.
Thanks to those brave women who have been speaking out for so long and telling their physicians their symptoms.
Informing their physicians long before 'scientific' studies were done to prove there were severe after-effects from these sex organ surgeries. Effects which are not mentioned to the patient by the 'medical' industry before these surgeries are done and before obtaining a consent form from the patient, to do the surgery.
Just because you do not lose an exterior body part, and your amputation become outwardly visible, does not negate the devastating after-effects of these surgeries which leave women emotionally and physically challenged. Challenged in every aspect of life.
These surgeries can not be reversed.
Blogs like these do help us to tell our stories and hopefully help those who might consider having sex organ surgery, avoid it if at all possible.
THANK YOU HERS FOUNDATION.
You are saving lives!!!
This is not an easy subject to deal with publicly. These are very personal issues.
I guess the only issue I have with these recent reports, is that they clearly are an attempt to show that estrogen supplementation is needed. It also attempts to focus on not removing ovaries, as if removing the uterus isn't still a problem in and of itself, and as if removing the uterus doesn't compromise ovarian function, whether they are left or not. How many ways can we angonizing dice up women to try and claim that this pelvic surgery is legitimate in any form or fashion. I saw one article that says:
- 40 and under; leave ovaries
- 55 and over; remove ovaries
- 45 is a good cutoff point between the two
What kind of insanity is this???
http://www.boston.com/yourlife/health/women/articles/2005/08/01/removal_of_ovaries_may_affect_heart/?page=2
Wow...this really sheds some light on my questions. I was 17 when I had one of my ovaries removed. I am 38 now and I have noticed over the last several years, I forgot a lot of things. I even forgot my kids names at one point for about 5 minutes. I read something and cannot recall what I read right after reading it, the list goes on and on. Any advice on what type of doctor I should see, this is really becoming annoying.
Please post your response to the last comment and any new comments here:
http://hysterectomyinformation.blogspot.com
I suffered very severe cognitive problems after my hysterectomy/oophorectomy at age 37. It started with loss of creativity (if you're not daydreaming the way you used to, that's a sign of loss of creativity). Fortunately I am a biologist and happened to read an article on estrogen and creativity, so I began taking estrogen and found that that helped some. My cognitive losses increased for the next several years, though during that time I discovered that oophorectomy causes some loss of testosterone and that testosterone supplementation helps the cognitive loss. I had trouble getting doctors to prescribe the testosterone (this was 25 years ago, when doctors thought women didn't need testosterone); and the amount needed increased my testosterone to above the female norm. Finally I I had my androgen levels without supplementation tested and discovered that my DHA, DHEA, and testosterone were all well below the minimum of the normal female range.
Knowing that DHEA is converted by the body into testosterone (among other things), I tried supplementing with DHEA alone, and discovered that I could bring all of my androgen levels up into the normal range that way. This supplementation produced very significant cognitive improvement, much better than testosterone.
DHEA can be bought over the counter, and I have talked with women who also found it helpful; at least one found it had unpleasant side effects. If you have good insurance, see if you can get your androgen levels tested. If they are really low (serious loss of sex drive is a symptom), you may be able to get your doctor to work with you in increasing them (though they'll probably only offer testosterone).
Thank you for this wonderful information. I thought I was going crazy since my hysterectomy, with both ovaries removed. I have cognitive difficulties, unable to recall information, depression, and irritability. I had my surgery 6 weeks ago. When I shared these difficulties with my gyn. he did a hormone level and TSH. Both were normal. I am going to ask for a androgen level.Thank you. Thank you.
I was 48 when I had a partial hysterectomy in America - ovaries and uterus - but not the Cervix. I was not yet menopausal at the time. You can't imgaine the trouble I had convincing my surgeon to let me keep the Cervix, but this was because my best friend in the UK, a Consultant Gynae, recommended it, saying the recovery is much faster and long-term effects less. I have been laughed at for this in America by doctors many times since then, but I believe it has helped me to maintain a better sex-life, athough my libido definitely dropped-off.
Anyway, I have found my powers of thinking have been reduced considerably in the past 4 years since I had the surgery. I feel just mentally exhausted often and I go through periods when I have to really force myself to think. I also have much more tendency towards depression. This is particularly tough since I am the President of a company with a great deal of responsibility. What I wanted to say is the one thing that I have found does help is strenuous daily exercise. If I get up early and run or walk at least three miles and then lift some weights, and then stoke-up with a good breakfast, it does help me to think more clearly for several hours. I also find that a short cat-nap around lunchtime helps me to hang-in there for the afternoon. Getting enough sleep at night is also essential. I have had to make this a major priority in my life - or I would have been out of business! I try not to let it get to me too much. Many people have to make things priorities in their lives to be able to cope and this is my thing. I find that if I think about it like that, I don't feel as resentful, because, to this day, I feel I was duped into the surgery. And I was finding it was the resentful feelings that were increasing my depression!
The great offshoot of the exercise is all other vital signs such as blood pressure, pulse rate, oxygen in the blood etc. are very good and it is also helping me to control my weight and maintain better self-image.
I take estrogen and testosterone and thanks to this website, I am not looking into DHEA.
But the exercise is, in my opinion, the over-riding factor to be keeping on top of my mental abilities.
I was 40 when I agreed to have a hysterectomy because of all the PAIN & suffering that I had to go through. My pain was so servere that I could barely walk, I was bed written for three months before my surgery. I had removal of everything except my cervix, at least, this was what the OBGYN & I agreed to. After switching back to my previous OBGYN, he informed me that I had NO CERVIX! At first I was shocked, then angry, hurt, and wanted to retailiate by suing. As time went on, I eventually let it slide but would often have mixed emotions about how the doctor that I trusted decieved me. I also found out later on, that my case of endometriosis could have been helped had she given me something ealier on. I also blame myself for not having better medical insurance. I know that no one unring the bell, so I do my best to take care of myself by exercising, eat right (a hugh challenge) and take hormones every now & then. My doctor has recommended that I take them twice a week...It's crazy because if I don't take them, I go through the side effect, memory loss, etc. I can feel some help when I do take them BUT I gain too much weight when I do, SO I don't always take them. If someone is considering a hysterectomy & they haven't had three-four opinions, I'd say DON'T do it! Try natural alternatives & pray really hard. My heart goes out to all the women here who have gone through this horrible experience. Thanks ladies for sharing & God bless you all. Please excuse my bad grammer & writing...I am now 44 and plan to go back to school but I'm afraid that my memory (brain) won't contain anything and I'll forget everything the next day. (LOL) but really sad.
I had a large cyst on my ovary. My Gyn told me to have a complete hysterectomy. I went on some websites to see if I could get any info as my Gyn told me neither ovary's do anything now that I am post menopausal. I found that ovaries do produce about 30% of the hormone required to protect you from stroke and heart disease.Plus I wasn't happy about unneccessary surgury. I went to my lady GP and explained my concerns. I asked her if I was being silly as I had decided to have one ovary with the cyst removed and leaving the rest in tact. She said and I quote "I think you have made a very reasonable decision. So in December I had my ovary and cyst taken, I feel great. Take a second opinion before you make your decision.
You were very lucky. I had a large ovarian cyst also. I told my doctor to only remove the cystic ovary. He took everything anyway. Maybe this site also needs a name that good doctor blog!
At Memorial Sloan Kettering in New York, it was found that a cyst on my ovary appeared, but it was just what happens every month during ovulation anyway. They said they could remove the cyst only and leave the ovary in tact, but it was due to ovulation. So don't settle for removing the ovary if you have a cyst. Just get the cyst removed. And get your own contract from a lawyer for your doctor to sign. He or she will think twice.
I could use some help here...I am 56 and about to undergo a Total hysterectomy (removal of uterus & cervix) due to a large fibroid in the center of my uterus. My concern is, should I leave the ovaries or have them removed? Because of my late age am I running a risk of ovarian cancer in the future? There is no history of ovarian cancer in my family. Please help...my doctor advised me to leave them. Thank you.
Alice,
Have you considered undergoing a myomectomy, thesurgical removal of fibroids, leaving the uterus intact?
Are you still menstruating? If not, when was your last menstrual period? Are you taking hormones?
Since fibroids slowly but surely shrink to a negligible size after menopause, if you are not taking hormones and are recently or soon to be menopausal your fibroids should shrink without anything being done.
Are the fibroids causing you any problems?
I am not menstrating. I have one huge fibroid in the center of my uterus which is causing the uterus to be so enlarged. One day of heavy bleeding in the months of Nov., Dec. & Jan. It is unusual at this point to have such a large fibroid. I have never had any fibroids until this point. Because of my age, that is why I needed an objective opinion. I have complete confidence in my dr. Not interested in taking hormones.Please advise.
Because these are not simple issues, I suggest that you call HERS at 610-667-7757 to arrange a telephone appointment to speak with a counselor.
I hate to repeat everyone's statements, but I'm so glad I found this. I'm 32 and had a radical hysterectomy (4 months ago)where everything was removed due to precancer cells that couldn't be treated and the ovaries were removed because the endometriosis was so bad. I feel pretty much back to normal except for the memory and cognitive issues. I can tell I don't think as well as I used to. I work with all men, all day and troubleshooting is a big part of my job that I know I don't do as well. I was thinking about going back to school but I'm actually worried about being able to remember things. I'm on ERT but either it isn't enough or there is something else, what are we supposed to do? I could just kick myself for not having requested my hormones be checked beforehand so I knew what levels I was at so I could get back there. There are entirely too many people who don't know about this.
I'm adding on to mine. This line I have referenced below, what is the "critical age window"? Meaning what are the specific ages.
"The effect is age-dependent and suggests a critical age window for neuroprotection."
Wow, glad I have stumbled across this site, I am 46 years old,and have a bloodclotting disorder, had a hysterectomy at age 41, they left both ovaries, started having pain in abdomen, and found cyst of my left ovary, it grew in size over a month of observation, obgyn decided to do surgery, asked if they could only remove cyst, doc said the cyst is the ovary, since he knew of blood disease, he knew i could not take hormone replacement, thought he would do blood test to confirm blood disease, but said he would, day of surgery, asked again, he said he was going to go in and remove ovary, if other looked bad, he would remove that too, to my understanding, since i had blood test done for possible cancer, and was neg, with no family history of cancer, I was safe with coming out of surgery with one ovary so that i would not be thrown into menopause, without hormones, WRONG! He took out both, I felt like I had no decision, there was no cancer, so why? I contracted MRSA while in hospital and became very ill. No mind you, this has been a total of 3 months time since first speaking with this doc about procedure, and still no test on blood disease, with no plan on what to do with both ovaries gone. 3 more weeks pass next visit, I am an emotional wreck, hotflashes that I can not handle, and no one understands, they just laugh because I am going thru change of life, mind you it is not funny! Doc said he would put me on hormone replacement meds, i reminded him about blood disease, he said oh ya, i will have you tested see you in 4 months, broke down in office and he said i have more going on than just hormones and need psych help. I can't believe how all of this came to be, I used to be happy and had normal energy for my age. Now, I am depressed all the time, cry at drop of pin, feel like my brain is in a fog, and I don't even have enough strength to break a pill in half. Mind you i am still waiting to find out if i can have hormone replacement or what I can do. If I could turn back time, I would never have done this surgery. Or maybe should have had different doc! So whoever reads this hope it helps, and definately way all of your options!
I was 41 when I had a complete hysterectomy. I had several bouts of ovarian cysts throughout several years. I also had severe endometriosis. I was tired of constantly having to get my cysts checked; Everytime I feared that this would be the time it wasn't a simple cyst. My doctor convinced me that a complete hysterectomy was the way to go. I wish I could go back. I'd rather live with the cysts and endometriosis then the severe memory loss and weight gain. I'm stuggling to function at a job that requires quick memory reaction. I'm on estrogen but it doesn't seem to help. I wish there was another treatment. I'm too young to have such profound memory loss.
So glad that I stumbled on this blog. I have read every one of your comments and posts and am now unsure of my decision. After going to my old Gyno and telling him that something wasn't right, he finally decided to do an ultrasound. He found a fibroid tumor that was 10cm in diameter located inside my uterus and connected to the epithelial lining. He said to leave alone and it will shrink when I go into menopause. Now, one yr later, the fibroid had grown to 12 cm and blood tests reveal that I have not started menopause. My abdomen looks like I am 6 months pregnant and I have urinary issues. I am 53 yrs old and the new Dr that I have recommended not doing a hysterectomy. I am scheduled for surgery in 3 weeks. What do I do??? I certainly don't want to have cognitive problems or depression on top of all the other symptoms associated with surgery. I told the Dr that I want to leave one ovary so that some of the hormones will still be released. Any suggestions???? Please write your opinions. By the way, I exercise at least 4 times/wk and the tumor seems to have grown instead of shrunk since I have gotten more into exercise.
Anonymouus,
You never need a hysterectomy for fibroids. If you would like to discuss your specific situations and options in treatment contact HERS at 610.667.7757 or fill out the contact form on hers website:
www.hersfoundation.org to request a telephone appointment to speak with a cousnelor.
I had a total hysterectomy at age 50 because of a large uterine fibroid that was causing excessive bleeding. I had put off the surgery for several years and had investigated laparascopic removal of the fibroid (a procedure which was new at that time - I went to the specialist who was featured for a second opinion), but was told it was too large to do that way. Immediately after my surgery, I noticed difficulty with my memory and went to my gynecologist. He laughed and said I was just getting older, and made no connection to the hysterectomy. To this day, I have to concentrate so hard when things are shared verbally with me, and I have to work at processing information. I laugh about having difficulty with word retrieval...and identify old age as the culprit (I'm 65 now) although it has been going on since the hysterectomy. I remember the fear I experienced at the time, of continually searching my brain for information and not finding it. The difficulty I experienced in processing verbal information, responding to conversational information, and verbalizing my thoughts quickly and clearly was particularly hard. On paper, I do much better. In addition to the memory loss and processing problems(those things I feel are my most severe impairments), I totally lost a very healthy sex drive. I did use hormones and my gynecologist did add testosterone. However, I discontinued the testosterone because I was eating everything in sight while I was on it. After the warnings regarding hormones and heart disease, and having heart disease in my family, I discontinued the hormones and went through menopause. Needless to say, I still struggle with all the debilitation I first experienced. Adding to this, I continually face the possibility of Alzheimer's as it is prevalent in the women in my family, none of whom had hysterectomies before me.
This is outrageous! I knew the removal of the ovaries was known in medical circles as castration, but not told in this terms to women, but I didn't knew it had such severe consequences.
Can I copy/paste this article in my yahoogroup/facebook to spread the information?
http://www.facebook.com/group.php?gid=106150077602&v=wall
TIA
Spread the word! You can also post a link to the Female Anatomy video, http://www.hersfoundation.org/anatomy.
I am 38 and I had a tubaligation in 1994 followed by a right ovarectomy. I had one period since then and no more. I'm married again and I wonder if I can get my left ovary to produce
eggs once again with hormone treatment or medication.
Did you have any diagnostic testing since you stopped menstruating, such as an ultrasound and blood work?
Acupuncture may be more effective than any drugs, and does not put you at risk for blood clots that can cause a stroke, or an increased risk of breast cancer.
If you would like more information contact the HERS Foundation at 610.667.7757.
I had severe migraines every month with my period. I tried everything and nothing worked. I was in desperate pain, and at that time(1995) they were not prescribing opiods for chronic pain. My ob/gyn got the bright idea that atotal hysterectomy would take care of the problem. I was desperate and ready to try anything to get out of ten days of AGONIZING pain a month. The only thing the surgery cured were my cramps. I ended upo with severe depression, weight gain, rheumatoid arthritis that was probably triggered by the hhuge hormonal shift, and my headches became constant instead of only 10 days a month. I ended up on disability(ended my career as a symphonic violinist) and have suffered the cognitive problems described in the article. I especially have trouble finding the words when I'm talking. I'ts very embarrasing. The sad thing is that now I am prescibed opoids for my chronic pain that if had been given to me for my headaches in the first place, I may have only been treating headaches. I wouldn't have lost my career, and possibly not my 20 year marriage. My ex husband always thought the word finding memory problems were due to my medications. I knew EVERYTHING changed after my hystectomy. I know that some women have no choice in the matter, but please do not let pain be your deciding factor. Pain can be treated.
I am now 48 years old, I had a Partial hysterectomy 3 years ago. I had my Uterus and right ovary removed. I have been experiencing sharp pain on my right lower side when I quickly stand or have sexual intercourse,I am also having tender nipples. Can anyone tell me what is going on. I have no medical insurance at the moment,so I would really appreciate any feed back..
I had one ovary removed due to torsion, 5.5 years ago. Since then I have noticed memory loss (long and short term) loss of focus and attention, and occasional inability to come up with the right word. I've just started researching this and found this helpful blog. My questions are: has anyone else (with only one ovary removed) had similar symptoms? And is it possible that the symptoms began immediately after surgery and have continued/progressed? Up until now, I've always just attributed it to "baby brain." (I've been lucky enough to have 2 children with my 1 ovary.) I will now look into testing my levels and possible hormone replacements. Thanks everyone and best wishes.
Apparently I am the only one who finds this site demoralizing and very disrespectful to women.
I had a hysterectomy due to large fibroids......well guess what I was one of the .25% whose fibroids were cancerous.
Quite trying to scare people into doing the right thing for their health.
Here is where I do agree, I think women should use hysterectomy as a last resort. There is no reason to rush into it and not research it. This site needs to be more respectful to the many women who had to have hysterectomies and to tell them there life is now sub standard is just WRONG. Why are women tearing down women?
@ Bobbie Babble, I don't see any of this as demoralizing or demeaning; the article and comments are simply descriptions of what many women experience under this set of circumstances. If you haven't had the incidence of cognitive loss the article refers to, I think that's great, you and all the other women who haven't are blessed, and I'm thrilled for you that you avoided the ordeal of cancer.
But for the rest of us, who have lived for months, years, sometimes decades, with the lasting effects of having our ovaries removed, sometimes in very difficult situations, I know I wish I had at least had a choice. It changed who I was. As an unmarried, childless, 31 year old, I was devastated by the prospect of not having the family I dreamed of. My gyn. left my uterus, in case I decided to have egg-donor implants, and I was grateful. He was trying to salvage something good from a ridiculous series of events that led to my surgery in the first place. But I have to say, it's been nothing but trouble! Migraines, constant bleeding, which was finally stopped by a uterine ablation...and it's not as if I was in any kind of emotional shape to consider that egg-donor, or even adoption. I was a total and complete mess. It seems like I cried uncontrollably for three years straight, until they were able to regulate my hormones to a degree that I could function. During that time I gained 100 pounds - even though I had never ever had a problem with my weight before - became extremely depressed, and had hot flashes that even embarrassed the people I was with! My sweet husband, whom I was dating at the time I had surgery, still cannot believe how much like a sieve my mind is; he is just now, after 20 years, beginning to understand and really believe that I just can't help it! We'd only been going out a few months when "The Surgery" took place, and I don't think he even remembers who it was he fell in love with. He's spent a good part of the last 19 years (as of Tuesday!)living with a depressed, headache-y, unreliable, weepy, absent-minded, confused, bitch!
So am I trying to scare anybody? Nope. Just reporting my experience. Do I want other women to explore all their options, including getting second and third opinions before they have this sometimes life-altering surgery? You bet. As I said, I didn't have a choice; I had dermoid cysts on both ovaries. I had one removed at age 18 with few side effects. The second one caused acute pain and had twisted and torqued the ovary to the point that it was getting no oxygen and ended up being just dead tissue, and I had to have emergency surgery to have it removed. The doctor who did the surgery actually told me it was due to incompetent, insensitive doctors and that HE thought I had a lawsuit! I couldn't deal with that though...
It really did change my life for the worse. I can't tell you how painful it was to be trapped in a room with friends my age who chattered on endlessly about the glories of pregnancy, or how I once actually considered opening the car door and jumping out into busy rush hour traffic to escape the discussion on how to get rid of formula stains on baby clothes. And that's only the beginning...
But that was a long time ago. I am better now. I am actually going next week to see a doctor about being tested for bioidentical hormones. Now that we're all 50-ish, many of those same friends are having the same hot flashes, etc, that I did, and since I still have a lot of the physical symptoms, I'm taking their recommendations and checking it out. I can't say I would wish the experience on anyone, but I can say now that I wouldn't be where I am today without having gone through it, and where I am today is pretty good.
I am 57 now. I had a hysterectomy when I was 27. I have a lot of symptoms I didn't relate to hysterectomy one of which is terrible memory problems. I am also extremely angry and depressed even after all this time at the bubbling, insensitive jerk who operated on me. I believe a hysterectomy at that age really messes up your whole life. I feel very old. I feel totally violated and abused. I had a vaginal hysterectomy and I have chronic back pain from it. My job is very physical and I can't tell you how bad my body and health is failing. I have absolutely no sex drive and sex isn't anything in my life. My husband "uses" my body. What a miserable existence. I can't tell you what I'd like to do to the surgeon. He was supposed to have left my ovaries. Don't know what else or if he did. I haven't been to a doctor for women issues since I was 35. I can't stand to be touched. I believe I have post traumatic stress disorder from the experience. I can't even bear to enter a hospital, go to a doctor, have medical tests or anything without almost having a mental breakdown. Now I'm having problems that may require surgery on an old injury. Somehow I can't even deal with having ex rays. I don't see much for my future. I'm sick of life.
I recently had an ovary removed as well as a portion of my bowel due to a a bowel obstruction. It was Emergency surgery, was admitted due to severe abdominal pain and after a CT scan a serious cyst was discovered on my right ovary. So not only did I have my bowel restructured, but I had an ovary removed at the same time (and within a few hours of being admitted to hospital). It was very sudden and had to be done, I could not keep food down and vital signs were not the best. I was also admitted to hospital a 2nd time to stabilise issues relating to the bowel operation. I have now been home for 3 weeks and finding that I am extremely tetchy, short tempered and generally just grumpy. My memory is not the best at the moment either (but as I still have a remaining ovary trust that this will come up to speed and do what it should by increasing production of hormone output) I realise that memory loss and tetchiness is probably also due to the after-shock of the two procedures. This site has been enormously useful reading and I will definitely be querying any further gynae operations very strongly (though I realise that the single ovary removal was essential). I am getting started on an exercise programme tomorrow (and have already been forcing myself onto long walks (as much as I can take right now). I am definitely tagging this blog to keep reading updates as a huge amount of insight is gained from other experiences. For the medic the view is that "these are fairly common procedures" - however most of the medics that conduct these procedures have never had it done to themselves.
Hi, im truly heartfelt sorry for you ladies, but I fall into same category! Always had heavy bleeding in teens, 20's, by 30 diagnosed severe endometriosis...Laparoscapies risky, u know that, causing endless scar tissue, and adhesions. Then endless cysts, fibroids, mennerohagia(heavy clotted bleeding as big as a baby's arm sliding down legs, 4 Maternity 2 super plus tampons, every 2-5 mins daily).Chronic pain, embarrassment! Always in pain, pre/post Op, no break from bleeding. Previously on every hormone pill and Merina coil, hystercospocy, D+C, iron injections,colonoscopy, barium enimas (torture !)...Ok reluctantly gave in, Surgeon said u should have a hysterctomy, 42yo. Husband left me at 32, said im soiled goods, can't have kids and tearfully had to go alone.... and alone last year for a Hysterectomy (which stuffed up my bowel 99%, despite extreme laxatives !!). Huge fibroid in bulky uterus, but six months prior, all fibroids in uterous removed, smaller ones left, Surgeon satisfied, plus more removal of endometriosis previous year all removed, grows back like nails, unplucked eyebrows..so cervic removed too, but left my both Ovaries. Two weeks after Op, Ultra Scan/TVS scan and CT scan showed a 12mm cyst on left ovary. Shocked, thought Hysterectomy the final journey, cure !! In extreme pain. Paid 3 Private Gynaeos..all said OK its only folic cyst, normal, your age leading to change of life, leave it, it'll either shrink, or disappear. I know my body too well, knew it would rupture, history of several normal cysts that have..Yes, I am mad because I was right, it had ruptured and worse still, cancerous, bloods undetected !!.So last week reluctantly so ill, cared too much for stressed medics to worry them, as they called me fake many times at Triage. I went Hospital, I had emergency Op, left on ovary and cyst. Left right ovary not removed. Mass tumour wrapped around bowel and colon too...2/3 more days, was told Septacemia, how frightening and negligent !
I've been butchered, memory not sharp either any more, takes a while to process information, complete sentences, remember names, etc..., very depressed, crushed in fact, but have to be strong as singleton, soldier on, put on fake smiles, everyone knows im always happy lady, never mention this...told a friend and she betrayed my trust, blabbed it to my neighbours,work colleagues, in fact community, which is small ! Now they are bullying me, justifying my symptons on pain scake are 10/10 !! My mask has cracked, feel bullied by Surgeons, Docs who neglected my pleas for help, long term health plans, until I admitted myself Triage, 16 Ops, scanning over ten lousy years ! No faith in them, all their theories conflicting from re-section of fibroid, (laser loop), gave me leap of hope, but no not God, Surgeons still contradicting each other, im just sitting duck..in this case caused me blood poisoning too! No womens clinic for reviews, I live in remote part of Australia, have flown interstate for Private expensive Hysterectomy as recommended by Professor Obs/Gynaeo, sure "desperately wanted cure, can't put price on your health and want problems resolved" by a good Surgeon. Now I'm so sad, went to a psychlogist, who dismissed me as a stupid woman, in fact said all women exaggerate and are neurotic ! I have been to hell and listened to them all, a butchered, lady, botched up surgery and fat fees for them! I am alone. Is One ovary ok ?? Please help me. Thank you. I am 44 now, feel aged by 30 years, drained !! Sincerely, Alyson ....
Any feed back, even some TLC greatly appreciated.
Patient Liaison, Unit Manager not responding to my letter, Private Interstate Gynaos a long waiting list
Hi its Alyson again, I know long story, but my question really was as the Left Ovary and cyst removed, will I have more problems with enough estrogen, and early Menopause? Student Doc who discharged me had no clue !! My GP and two indepent Private ones aren't sure. Can it spread to my untouched Right Ovary, no Senior Docs to allay my fears ??? And they've all misdiagnosed me anyway.
Thank you again.Any feedback so appreciated. I am stressing big time.
Kind regards, Alyson
Wow, Alyson, all that just sucks big time! Wish I had better words for you, but as I wrote in my last comment, I had no problems when I just had one ovary. But then, that was when I was between 18 - 31 years old, so, different issues. I was told then that it wouldn't affect my chances of getting pregnant, etc.
I don't know how it is in Australia, but here in the U.S. you can often go see a nurse practitioner, many of whom are female, and my experience has been that they are very understanding and empathetic. Of course, that's just the 2 that I've been to! Hah! Anyway, sometimes they work with doctors who prescribe bio-identical, or natural hormones, which are much better for you than the synthetic ones. Plus, they actually test your hormone levels (imagine that!) to see what you need before prescribing anything.
I can't imagine what you're going through right now. I know the thing that got me back on the right track was going to a doctor I knew and trusted. That and lots of prayer - not so much for answers or solutions, but for the conversation, you know?
I hope you feel better soon. Nothing like feeling crappy ALL the time...maybe somebody out there who has some medical qualifications will post an answer. In the meantime, hang in there!
Peace to you ---
Alyson,
First, I want you to know how sorry I am that you have received not only bad medical treatment, some of it was abusive.
From what you wrote it sounds like your left ovary may have been removed, but it is not entirely clear.
You need the remaining right ovary, it has critically important functions, and if the blood supply to the ovary was not damaged during the hysterectomy and other surgeries, it will continue to function your entire life time. If you do still have one ovary, you are better off to not take hormones. If you take exogenous hormones, such as hormone pills or patches, your ovary will soon stop functioning from lack of your endocrine system getting the message that it needs to produce hormones.
Do you have the written surgical and pathology reports from the hysterectomy and surgery on your ovary? If so, you can scan and email them to me at HERS@hersfoundation.org, and I will review them with you via phone or email. That will help clarify exactly what your situation is now regarding what was removed in the surgeries.
It may be helpful to you to watch the short, free video on HERS website "Female Anatomy: the Functions of the Female Organs" at www.hersfoundation.org/anatomy. It is not a video of the surgery, the video explains how your body is changed when the uterus and/or your ovaries are removed.
HERS counsels many women who live in Australia. If you would like to connect with other women who live in Australia please send an email to jkabak@hersfoundation.org and say that you would like to network with other women in your area who have undergone hysterectomy.
I had an ovary removed several months ago due to a mass that could not be ruled out as cancer (according to my OBGYN) I was told that I had no choice so I went through with the procedure. Turns out that it wasn't cancer but my life has changed drastically because of this so called must have procedure. I can't remember anything, there are times when I feel severely impaired as if I were on drugs or drinking alcohol when I don't do either. I feel extremely exhausted to the point I can't keep my eyes open and I'm very cranking. This mainly occurs during the first few days of my cycle but the memory is a daily challenge. I'm praying that this balances out and i start to feel normal again but I fear that it doesn't.
I had an IUD placed after the birth of my first child. I got pregnant with my second child shortly after. They could not find the IUD and said that I must have lost it. I had a successful pregnancy...thank the Lord! However, five years later (age 32), after years of pain and suffering, the IUD was discovered in my abdomen. I had surgery to remove it, my appendix was also about to rupture as well as extensive endometriosis on my bladder, bowels, etc. The IUD perforated my uterus and the string was still inside my uterus allowing all the cells outside into my body cavity. I was still having so many issues that I sought out a second option. The only solution was to remove everything (total hysterectomy) because the hormones were triggering my mentstral cycle to the cells inside my abdomen. I immediately starting having night sweats, insomnia and joint problems after the surgery. In my opinion, this was a small price to pay versus the pain that I was experiencing every day. HRT was not recommended and I still live with menopausal symptoms daily.
I am 5'6" and weigh 125lbs., so I don't have weight problems. My sex drive is also great. My concern now is that at 45, I am having severe memory loss. My memory has always been extraordinary and it is very distressing to think that I am loosing my mind at such a young age. I am also having a terrible time with my joints and have trouble with stairs, bending, squatting, lifting, gardening, etc. Any advise on what I can do to not feel like my body and mind are falling apart? I've always been very active (skiing, hiking, water-sports) and not being able to think and do is very depressing!
I had my left ovary removed due to a dermoid cyst 4 years ago. I am 28 years old. I experienced hot flashes, loss of energy, loss of sex drive and memory loss. I feel depressed all the time. It may sound crazy, but my only hope is the development of artificial ovaries. I really pray for that so that we can all find actual relief.. Be happy again..
Thank God I found you!
I teach language at the University and in February I had a total hysterectomy.
Ever since, trying not to use synthetic estrogen but some plant replacements instead, I face constant problems with word retrieval, lack of contcentration, nervousness, neurasthenia,depression... I even think of quitting my job, unable to write and give my maximum.
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