Best and worst of hysterectomy

[randyk47]

Hi this is actually Mrs. Randyk47. My husband came to this board almost 2 years ago to seek information about me potentially having a hysterectomy which I did have in July 2006. We've hung around over here to help and provide support like so many of you provided us back then. For me my hysterectomy worked out wonderfully. Luckily I was a candidate for the less invasive LSH procedure. My recovery was quick and medically unremarkable with no complications. I don't really know what could be classified as typical or normal but my outcome was great. It was not an easy decision back then and I wouldn't wish that process on anyone.

[Karon18]

Hi Elaine444,

I am so sorry to hear what has happened to you after your hysterectomy. No one should have to go through that. You said you had taken progesterone after surgery. I always have been told that if you don't have a uterus you don't need progesterone. My doctor advised against it. I was wondering why your doctor would put you on that.

[Elaine444]

Originally Posted by Karon18

Hi Elaine444,

I am so sorry to hear what has happened to you after your hysterectomy. No one should have to go through that. You said you had taken progesterone after surgery. I always have been told that if you don't have a uterus you don't need progesterone. My doctor advised against it. I was wondering why your doctor would put you on that.

Thanks for being kind Karon18. Your support is appreciated.

For years the conventional thinking among doctors was that a woman without a uterus does not need progesterone. This hormone was associated only with the uterus and pregnancy. However, this outdated thinking is changing and more and more doctors are prescribing progesterone if a woman really needs it. A woman has progesterone receptors throughout her body that respond to progesterone, not just in her uterus. Have you ever heard of progesterone receptive/positive breast cancer? similar to estrogen receptive/positive breast cancer? Even a woman's breasts have progesterone receptors that respond to progesterone. Progesterone has effects on a wide range of bodily functions such as your digestive tract, bones (recent studies have identified progesterone receptors in bone), metabolism, brain functioning, etc...

I know of quite a few women in surgical menopause that seem to benefit from progesterone along with estrogen when estrogen alone even at an optimal dose and level is not enough to help certain symptoms. Some of the following symptoms are often a result of lack of progesterone, although some can also be from thyroid or estrogen or testosterone problems (blood and saliva tests of all these hormones can be helpful in figuring out which symptom is a result of what):

Headache, Hot flashes, Low Libido, Anxiety, Swollen or painful Breasts, Sleep Disorder, Moodiness, vaginal shrinkage and/or dryness, Fuzzy thinking, Painful intercourse, Food Cravings, Dry skin, irritability, Insomnia, Memory Loss, Weight gain, Heart Palpitations, Bloating, Yeast Infections, Inability to reach orgasm, Painful joints

Another reason for prescribing progesterone (and the original reason I was prescribed it post hysterectomy) is to oppose the action of estrogen on any remaining endometriosis not removed at the time of hysterectomy, since estrogen is the hormone that feeds and aggravates endometriosis. I had endometriosis lesions on my bladder and sigmoid colon and various pelvic ligaments. In fact very little of my endometriosis was actually on the sex organs that were removed. Just because you have your ovaries removed does not guarantee that the endometriosis will just go away. Progesterone shares some of the same receptor sites as estrogen and has some of the opposite effects of estrogen which in turn deflects estrogen's activity on endometriosis cells. It's a very complicated process. I had tried at one point to go without hormones altogether but nearly lost my sanity and my symptoms were too severe. It is not uncommon for some doctors to prescribe synthetic or natural progesterone alone for a period of time to a woman who just had a hysterectomy for endometriosis.

I am not currently on progesterone, only estrogen and testosterone. When I was on it I found it very helpful for insomnia and sore breasts, but also found that it caused me to have symptoms of too little estrogen because as I said earlier both hormones share and compete for some of the same receptors. If one hormone is not balanced correctly, adding another can create more havoc. This is why I am really starting to appreciate how automatically and naturally my ovaries balanced everything out.

Personally one of the reasons why I "fired" my gynecologist and found another doctor to help me with hormone issues is that he was unwilling to prescribe certain hormones that I felt I needed and was not very open minded about working on my hormonal needs. For a woman in surgical menopause it is a lifelong process. He dismissed a lot of my symptoms that I KNEW were hormone related as something else like stress or anxiety. Yet he was more than willing to take my ovaries at my young age (33). Of course back then I had no idea what I was getting myself into when I consented for the "possible" removal of both ovaries. I didn't take the time to really research in a medical library. Of course, when even overworked doctors that dont have time to really keep up with the latest research are clueless about the effects of loss of ovarian hormones, how can I be expected to understand?

[Karon18]

Elaine 444,

You wrote so precisely and explained everything regarding progesterone ad its effects. I was impressed because you explained things better than most doctors. I am shocked that you had to have your ovaries taken out at 33 years of age. Was that necessary at the time or were you misled by your OB-GYN?

You have been through hell and I feel for you. I had a TAH BSO in April and because it was more of an emergency situation and that was the ONLY answer, I just went with it and fortunately, everything has been good. I was totally opposed to any form of HRT but because I went into surgical menopause overnight, I went with the Vivelle patch. It has been great and I have not had a single hot flash. However, I now want to get off of it but have been told by so many to stay on it since no adjustments were necessary and everything has been going so well. I am SO confused. I am taking a low dose (.0375) , estrogen only. You seem to b the expert...should I continue since I am feeling so well or just try and maybe cut back to one patch a week, instead of two? I would appreciate your feedback. I sincerely hope you are feeling better soon.

karon

[Elaine444]

I am not an expert when it comes to hormones believe me! lol. It's all a guessing game when you lose your ovaries. I have learned to really listen to the subtle and not so subtle messages me body gives me and sometimes I still have no idea.

As far as your own hrt dilemma, that's something we all have to figure out for ourselves since we are all so different with different risks and symptoms and backgrounds etc...I am a 36 year old woman with no history of any estrogen dependent cancers in my family and my needs will probably be a bit different than yours. Do you have a history of estrogen dependent cancer or does it run in your family? Or are you simply worried about the long term risks? I too worry about long term risks but for me the benefits outweigh those risks, especially since upping my estrogen has really helped improve my bone density (I have osteoporosis) and keeps the uncontrollable crying to a minimum. I know other women that feel so much better off hormones after giving their bodies time to adjust and have found other ways to cope but either way we all have risks and problems to deal with. I am on a .075mg Vivelle Dot patch by the way and at one time tried .1mg but gained too much weight and felt horrible. Below .075 mg and I have too many symptoms of low estrogen. But I also take compounded testosterone and have been on other hormones from time to time like progesterone for added support. I will tell you that changing your patch only once a week when it is designed for twice a week will cause you some major flucuations (sudden drop in estrogen followed by a sudden upswing when you finally do change the patch) and those fluctuations in hormones can be worse than a consistent low or high estrogen level. I had horrific migraines, chest pain, calf cramps and other symptoms that sent me to the ER numerous times on some forms of estrogen (troches, pills) because the levels did not stay consistent for me and the fluctuations caused drastic symptoms. If you really want to decrease or discontinue your hrt you are better off going to the .025mg patch and then off eventually over time. However you may find in the coming months that your symptoms may increase as your body continues to change and "realize" it no longer has ovaries and you may need a higher dose. Leaving it alone for now wouldn't be a bad idea unless you have serious risks for taking hrt like cancer, blood clots, smoking etc..

From my own experience I can tell you that for a surgically menopausal woman (which by the way is sooo different than natural menopause when a woman has years to adjust to a lower output of hormones, but still makes a small amount of hormones over a lifetime to protect her overall health) a .0375mg patch is an extremely low dose that most likely will not meet your hormonal needs over time, although it can help with the more immediate problems like hotflashes. Not all women have hotflashes or nightsweats in surgical menopause believe it or not. Those are just a few of the many many symptoms of surgical menopause that can occur. Also, it took me over a month after my hysterectomy to really begin to notice any major severity of symptoms. I learned that although some symptoms of surgical menopause are instant (unless you are given hrt immediately), most women will still have some naturally circulating levels of their own ovarian hormones stored for a period of time post hysterectomy/oopherectomy before they are completely depleted. Also how much body fat you have can make a difference since estrogen in the form of estrone is stored there too. I am fairly small and thin so it took me less time to feel the effects. This is why a lot of women dont complain of symptoms right away and wonder what all the fuss is about. Also keep in mind that after major surgery it takes a while to rid our bodies of all the drugs and anesthesia put into them. It took me four weeks before I really crashed and began to feel the effects (even with hrt). It was another year or two before some of the longer term effects began to make themselves known (urinary incontinence, vaginal atrophy, osteoporosis, muscle loss, lack of libido, fibromyalgia, etc.).

Even if I had kept my ovaries though I still have vaginal scarring and shortening to deal with (I can't wear vaginal rings for hrt because they wont fit in there properly), pelvic pain and bladder problems, and loss of the intense orgasms I had before.

My story is long and complicated but yes I do feel misled by my ob/gyn. I never had a chance to have a simple laparoscopy to just remove the endometriosis and leave my organs intact (only a diagnostic lap one year before my hysterectomy to diagnose the pain I was having and a trial of Lupron and birth control pills). I was told the endometrisois was too advanced. I had asked for another one. I was told a hysterectomy would be the ultimate "cure" for endometriosis and that that was my only option left since I didnt tolerate birth control pills or Lupron. My insurance would not cover me to see a gynecologist or endo specialist outside of my network and my choices here were slim. I did see one other gyn in my network and was told the same thing. (after reviewing my surgical and pathology reports post hysterectomy it is obvious to me that a hysterectomy was totally unnecessary and that my disease could have been removed by a skilled doctor). It is unfortunate that there are so few doctors out there with the skill, expertise, and willingness to remove disease and leave organs intact. It's easier for them and requires less training to just take it all out. A woman's reproductive organs are just not viewed as that important unless she is trying to conceive (I had told these doctors I did not desire children even at my age). At any rate I am no longer angry at my gynecologist in particular. I wrote him a letter stating how I felt and the consequences of what was done to me and have done some healing on that part. I still blame myself as much although I was not nearly as well informed as I should have been. Forgiving myself is much harder for me. My anger is more generally directed at the whole medical establishment and business of over prescribing hysterectomy. That it is more commonly done than tonsillectomy is disturbing in light of the complications that can occur and the long term consequences.

Sorry for going off on a tangent again. I wish you the best in figuring everything out and hope that everything works out for you. I am so sorry your hysterectomy was an emergency and that you didnt have time to prepare. Doesnt leave much time to take it all in does it? Good luck with everything!