Advice about Hysterectomy
I recently underwent an exploratory surgery and was disagnosed with endometriosis, prolapsed uterus, and probable adenomyosis. My second opinion doctor agrees with the first, that a hysterectomy is necessary. I have a choice about when, depending on how much pain I am willing to tolerate and whether I want to attempt a pregnancy first. I have 2 young kids and I'm pretty young myself, I'm in my late 20s. My husband and I were pretty sure that our family was complete after the birth of our daughter, but I'm still devestated by this. Logically, it seems like it shouldn't be a big deal, my husband was going to get a vasectomy anyway, but I'm a bit of a mess over it. It feels like I'm too young for this and I also second guess our decision not to have any more kids. I feel pressured to decide, and quickly, what to do. I know that the time pressure I feel is purely in my head, but it's a factor for me. I'm just really emotional about it and really sad for the loss of the ability to give life. And the finality of it. I was hoping to find some wisdom here of women who have been faced with this and have some experience to share. I thank you, sincerely, in advance for responding. Losing my oven
I'm very sorry you are faced with this tough decision, especially at your age. I am older, in my 40's, and after several years of fertility treatment found that I have adenomysosis, on top of a lifetime of endometriosis. I was told that a hysterectomy was the only way to solve those issues permanently, although the adenomysosis will resolve itself in menopause. You obviously have a long way toward menopause, so I'm not suggesting you wait, but here is what I've decided: I will live with the pain and discomfort for as long as I can. It will not kill me, and the pain can be treated as needed. I do not want to lose my uterus, even though it will not hold a baby. By family history, I may not go menopausal until my 60's, so I will wait and see what happens, and I will not be pressured by anyone to delete my uterus; that is a decision I will make when I am ready -- if I am ready. It is my mine, and I love it.
One doctor asked me why I was so ''attached to my uterus'', since it will never grow another baby (I guess). I replied: ''Well, you've told me you're done having children, why are you so attached to your testicles?'' 'Nuff said.
You can make your own decision about this, over time, as you are ready. The medical community seems to think that we won't miss our uteri, but I know that My BF misses hers terribly (she had cancer and had no choice). Please don't let anyone rush you into a decision. Take your time and let this all sink in. When you are ready, you will know. Anon
I have a friend who is 34 and found out several weeks ago that she has a genetic syndrome that puts her at extremely high risk for ovarian and uterine cancer. Her dad died of colon cancer less than a year ago and they believe he had the same syndrome. She has done the research and because her risk of ovarian cancer in particular is so high, like 70% or something, she has decided to have a total hysterectomy including ovaries. She doesn't know anyone who has had this surgery at such a young age and is very concerned about the implications and side effects of HRT, in addition to being just plain frightened of course. She is probably having the surgery around Christmas. Does anyone have any experience with this that they would be willing to share with her? Thank you!!!
I totally understand what your friend is going through, as I too have Lynch Syndrome (you didn't name it, but I recognize it in your description). Mine was diagnosed after my own bout with colon cancer and I subsequently opted for a prophylactic hysterectomy and oopherectomy. I was older at the time, 50, so I can't comment on the implications of having the surgery done at a young age, but if your friend is interested in communicating with someone else with Lynch Syndrome please share my contact information with her. Even at 50 it was not a happy decision to make, but I couldn't bear the thought of living with the resulting ovarian cancer risk, which incidentally I still have even without ovaries albeit to a much lesser extent due to the presence of other ovarian-type tissue elsewhere in our bodies. I have chosen thus far to use hormone replacement, so I have kept the symptoms of menopause at bay. Also with Lynch Syndrome
My girlfriend who had just divorced and was on the fence about having kids had the same procedure done at the same age. She recovered at my house for two weeks because I am a SAHM so someone was around to keep tabs on her. She's had relatively few issues and is approaching 42-She met and married a great guy who was also on the fence about kids and they decided if the urge ever strikes they will adopt. friend of...
I understand that your friend is frightened. I do have a friend who had a total hysterectomy at 36, and the symptoms were fine. She had a ''giving away all of her tampons'' party, and approached it with a great attitude and LOTS of support from family and friends.
Please tell your friend that she is so very lucky that these genetics were caught early and that her doctors are wanting to do the surgery now. A dear friend of mine also had a strong genetic history of ovarian cancer, and her doctors scheduled her for a total hysterectomy for when she turned 40. She contracted the disease at 34 and died at 36.
If your friend wants biological children (I wasn't sure if she has them), she can work with her doctor now to do egg extractions before the surgery. anon
I have recently found out I am going to need to have a vaginal hysterectomy. Everything I have read on the internet about the recovery is frightening in light of the fact that I have small children. The doctor I spoke with today made it seem like the recovery is not so bad and if I have the surgery early enough in the day, I could even go home the same day. What's the real story? I am wondering if anyone out there has had one and if they can share their experience with me to manage my expectations and help me plan better as the surgery date nears. Thanks! Hoping for a quick recovery
First of all, while you won't have an exterior incision, you're still having a major organ removed and you are put under for the operation. It took me almost the whole day after early am. surgery for me to be able to hold any food down (your innards stay asleep longer than your consciousness)and I ended up spending the night at the hospital. I was told not to drive for at least a week or two and when I tried after 10 days I could barely sit for the trip. I went back to work after 4 weeks or so and had to lay down to drive home (and I only worked 5 hours the first day!). Though I felt ''fine'' after 4 weeks, I had NO reserves. I really wished I had stayed out of work for at least another week.
On the other hand, I was able to wash a load of clothes the day I went home and could definitely walk around. Couldn't sit for very long though and I was not supposed to lift more than 10 lbs.
Now I did have a post op infection (but not serious enough to be rehospitalized) that probably resulted in a slower recovery but still having a major organ removed is NO JOKE and I cannot emphasize enough just how ''on empty'' you will be for quite a while AND of course there are the lifting and sitting restrictions for at least a couple of weeks. Been There
Recovery from a vaginal hysterectomy is usually easier than that from an abdominal hysterectomy, but both are major operations and require good postoperative management. Even with no surgical complications, several days of limited activity are necessary during the recovery period and I would not recommend that such a patient be required to care for others in the house (or even totally care for themselves) for a few days to a week after a vaginal hysterectomy. If there are children in the household, someone else should have the responsibility of caring for them. There should also be someone to help the patient with self-care as necessary. Please speak with the gynecologist who is doing the surgery for further recommendations. Robert
Hi there-- I just had a vaginal hysterectomy 2 months ago, and I have 2 babies at home (2 under 2). If you'd like to talk, email me back and I can tell you about recovery and hospital time etc. amy
My sister had a hysterectomy two months ago. There were 3 other women who had their uterus removed as well. They were all hospitalized around the same time. The other 3 women left after 2 or 3 days and were doing well. It is a major surgery and you should really take it easy for quite some time.
My sister ended up not being able to leave. In fact, she got very ill. Apparently, one in a thousand patients will have problems and she was that one. Everything that possibly could go wrong went wrong with her. She was in the hospital for 2 full weeks and she was extremely ill.
Realize that this is rare! She just happened to be that one in a thousand. She left the hospital 6 weeks ago and she is still recuperating. She's doing well, but she still takes it really easy. There are times when she just needs to lie down and rest. My sister is the busiest person that I know. She is someone who is always gone, never available, etc. This operation has changed her a lot. She just can't do the things that she had been able to do. She learned to listen to her body and rest when she felt that she needed it. Realize that you're not removing a wart. This is an enormous change for your body and you'll need the support afterwards to help you recuperate. Best of luck!!!
Has anyone had this procedure done? I'm going to have them removed primarily in the hopes of stopping prolonged bleeding (about 2 weeks+ per month). I'd like to hear from others who've had this procedure, and any cautions you'd offer. Thanks.
I had this surgery a couple of years ago, under general anaesthesia. I was surprised how easy the recovery was -- they told me to take a week off work, so I did, but I felt pretty much normal by that same evening, and never had to take a pain pill. (Hope yours goes equally smoothly!) The only thing that was awful about it was the plug they inserted into my cervix the day before, to get it to slowly dilate a few centimeters before the surgery. It makes sense to avoid having the cervix forced open from 0 to 10 all at once, so I'm not recommending you don't do it if it's offered, but... it was a painful insertion process and the cramps were harsh, like early labor (which, you know, makes sense since it was exactly the same process!) The good news is, it only dilates you to a certain point and then stops, so it was only uncomfortable for a couple of hours. But I wish they had warned me -- *that's* when I wanted a pain pill! Melissa
I will be undergoing a hysterectomy in a few weeks to deal with very large fibroids. I don't doubt that this is the right solution for the fibroids, but my surgeon has recommended that I have her remove my ovaries as well. I am probably within a couple of years of menopause (age 49) and I do have an aunt who had ovarian cancer. I'm wondering if surgical menopause will be significantly more difficult than natural menopause. The surgeon's plan is to start me on an estrogen patch at surgery and then wean me off it over the ensuing weeks or months. I would appreciate hearing about anyone's experience with this process. Thanks. hysterectomy-bound
I had a hysterectomy about 8 years ago, and my doctor used the same scare tactic about the benefits of removing my ovaries, and then said, (like yours apparently), that I'd hardly notice any difference, because they would just slap a patch on me while I was in surgery, and I'd be as good as new. Well, it didn't quite work that way. I was allergic to the patch, and then tried several other hormone replacement therapies, before giving up--they all made me feel terrible! So now I use acupuncture and herbs, and that's much better. If had to do it over again, I still would have had the hysterectomy, but I wouldn't have been so cavalier about giving away body parts that still serve a function. Wish I hadn't
I think the surgeon's idea of removing the ovaries at the time of your hysterectomy is a good one. My mother had a hysterectomy in 1975 (also for enlarged fiberoids) and the surgeon left one ovary in. Then in the early '90s, she found out she had ovarian cancer, and died from this in 1996. Breast and ovarian cancer tend to run in families. There's also a gene (BCRA-1 and BCRA- 2 I believe) which researchers have determined make some women more likely to get breast and ovarian cancer (my mother had both, but didn't find out until she was undergoing chemo). Lori
There is a wonderful book, Woman: an Intimate Biography, by Natalie Angier, that deals with this topic. Her point is that ovaries emit hormones even after menopause, so removing them unnecessarily can have unforseen consequences for the woman. I don't remember the details, but it's a wonderful book. Check it out! Natalie Angier fan
My neighbor had the exact same situation and had a really rough time after. She actually became suicidal. I went to the bookstore and got a book on hormones, they adjusted her dosage and she was fine. Her whole reaction was due to an incorrect dosage. Thus I would recommend you pick up a book (I can't remember the title but I got it at Cody's and there were lots of choices) and don't be afraid to speak up until the dosage is correct. Apparently it can take some fine tuning. Anon
Has anyone else experienced extreme fatique after a Hysterectomy? I had surgery 12 weeks ago and took my recovery very seriously (lots of rest etc.), but once going back to work and the hectic lifestyle, I am very tired all the time. I wake up in the morning tired, even after a good nights rest. My doctor did do a blood test to make sure my thyroid was working and I was not aneamic. The test came back normal. How can I get energy? I am being told that this is normal and it can take upto a year to feel good again. I am glad I had the surgery but I don't want to feel lousy again like I did when I was severly aneamic. I am taking a multi vitamin, calcium and vitamin C daily. Thanks Anon
Hi there, I had a hysterectomy (unplanned) a year ago at the birth of my daughter. I definitely noticed the fatigue you mention, also pain at the incision site lasting until 8 - 10 months afterward. Only recently have I felt like my regular self again as far as energy level, attitude and motivation go. Glad to hear you're not anemic, as I'm sure that will expedite your healing. If you still have ovaries/fallopian tubes then it might just take awhile for them to kick in after the trauma of the operation. I can tell mine have recently started producing my normal level of estrogen as I finally had the monthly PMS/acne breakout my doctor promised me I'd still get (without the actual period itself, glory be!).
If you find a support group in the Bay Area for this kind of thing, or want to talk more, please email me. There's some online stuff like HysterSisters.com but they're a little too Oprah for my cynical tastes (who needs a commemorative coffee mug fer chrissakes?!) Good luck!
I have a Hysterectomy scheduled for May 25, 2004 and I am so scared! I don't know if I'm doing the right thing and think I may back out of the surgery. I would really appreciate getting any advice. I am 39, have had one ovary removed due to a huge cyst. Have been diagonosed with Adenomyosis. I had to have two blood transfusions 3yrs ago due to severe Aneamia. Have been taking 1000mg of iron per day, and when I stopped taking it, became aneamic again. Monthly bleeding is getting heavier and heavier.My insurance runs out in June. I thought it would be best to get this taken care of while I still have good coverage. I trust my doctor, she says this problem will only get worse with time. I just keep reading so much negative stuff about unneccessary hysterectomy surgery, it's so confusing. I don't have too much time. I got a second opinion, but felt the doctor was trying to give me a sales pitch, said I could try ablation and if that didn't work get a hysterectomy done (all before June 30th when insurance runs out!) Other options I am aware of may help but nothing can stop the adenomyosis from progressing. My doctor says my hormones won't be affected because I still have one ovary, but I keep reading different info. on the internet. Should I beat around the bush, orjust get it done. I just don't know what to do. Any advice would help greatly, Thanks. Anon
I had a hysterectomy (still have my ovaries) about 5 years ago. While there is one side effect which is hard for me to adjust to (your uterus contracts/vibrates during orgasisms and when its missing there's definitely a diminishing of how an orgasism feels) I would still do it again. My bleeding/flooding was so out of control that I was sitting on plastic at home and wearing Depends at work for security. I also was very anemic. My quality of life was SO bad - didn't want to socialize/travel because of bleeding concerns, felt tired and weak, etc. and of course with such heavy bleeding for periods of up to 3 weeks (with surprise visits in between) my sex life was in the pits anyway. I was in my early 40's, had had all the children I was planning to have, hormone therapy wasn't working, and was told by my OB whom I trusted that while I could try some more alternative surgery/treatments, it really would just buy time (didn't try holistic treatments because quite frankly by the time I had my hysterectomy I just wanted the bleeding to STOP NOW - my life was truly miserable and I had tried alternative treatments for about a year and 1/2 without real results). I've not gone into menapause as far as I know (or very early stages anyway) and truly would do it again. By the way, talk to your doctor to see if you are a candidate for a vaginal hysterectomy (your uterus is taken out through your birth canal leaving you with NO incisions.) anonymous for privacy
I don't have first hand experience, but just had a conversation with a friend at work about this last week, who was telling me how she had to have a hysterectomy. I do have similar symptoms - an ovarian cyst that needs to come out, and also unrelated non- stop bleeding, which is finally being treated in a way that seems to work, with Progesterone. But my friend at work had the non-stop bleeding from a uterine tumor, and did have to have a hysterectomy several years ago. She said it was such a relief to have the bleeding stop, and she felt so much better with the problem solved (and didn't have to use birth control anymore!). She has never had to take hormones, since (I assume) her ovaries are still there. She seemed to bes very glad she had it done. Some male doctor apparently asked her if it made her feel ''less of a woman'' not to have a uterus, and she very vehemently said ''no way'' (or that's what she said to me). Hope this helps you not worry so much. It's too bad it's so scary for women to talk to each other about such things. When you finally mention things like this, they seem to be pretty common problems. I wonder if there are support groups? Good luck, Pam
I hear how scared you are and how difficult it must be to make this decision, especially with the time crunch. I think a third opinion might be worthwhile. Also, your MD is partially correct that your ovary will continue to secrete hormones, however the uterus is more than just the recipient of hormonal messengers (as it is often portrayed) . . . it also PRODUCES hormones and other substances itself. In other words, it is more than just an empty sack. Not that this means you shouldn't go through with it, but I think you need more information. PLEASE, if you have the time, get a copy of ''Woman: An Intimate Geography'' by Natalie Angier and read Chapters 5 & 6. It is neither pro nor con hysterectomy, but it will give you (in a very readable and enjoyable style) a summary of the latest research on the biology of uterus. Good luck. Emily