Venting/Family

Terri too -
I SO feel your pain. My older sister had a hysterectomy 5 years ago. At that time, she couldn't wait to have it done (she had endometriosis) and it was all she talked about for months. After her surgery, she raved about it --- said it changed her life in so many good ways.
Fast forward five years and it is my turn. My sister, meanwhile, is not getting along with her husband, hates her job, hates their new house, and is basically completely unhappy with her life now. I don't have endometriosis, but I have horrible fibroids and polycystic ovaries. I've had horrible pelvic pain for about 4 years now and my doctor and I have tried everything. The decision to have this surgery was not taken lightly or without thought. I am just sick of living on advil, not sleeping through the night, and feeling like I have to pee every hour because of the pressure.
I called my sister to tell her about the surgery and to discuss recovery. She freaked out on me --- starting yelling at me that I am too young (I'm 39), don't know what I am doing, and that I strong-armed my doctor into letting me have a hysterectomy because I want the attention! Since then, we haven't really spoken about it, which is a shame because we are usually really close, and I would love her support right now! I'm chalking it up to the fact that she is unhappy in her own life and can't deal with anyone else's stress right now. You should do the same --- maybe these women are scared to see you in pain or worried about other stuff and can't deal with the thought of taking on one more thing. That's my 2 cents --- sorry for rambling.

I am not sure how to respond to a post so that ther person I am responding to gets an e-mail??? Anyone??? Anyway, I wanted to let MRSA know that it sounds as though our sisters are soul sisters. Two months ago, my sister decided to terminate our very close and supportive relationship when I called to get some family health history to help my sick daughter. She became angry with me for inconveniencing her and then left me a seething message on my answering machine about how angry she was with me for not attending her (3rd) wedding. Three days before her wedding...2400 miles from my house, my 2 year old was discharged from the hospital after sustaining a severe concussion. She had been in intensive care for 9 days and almost died. While in the hospital, she contracted rotavirus and brought it home to her sister. On my sister's wedding day, my 4 year old was battling for her life with rotavirus. Additionally, we had just bought a house and had to pay $12,500 in closing costs and were broke...as if the two prior problems were not enough. I cry every night I miss her so badly and I want to be able to talk to her so badly about this. She too, has endometriosis and has had alot of problems...still has her uterus though. We were not friends until she was divorced and had some problems I helped her get through. I moved to where she lives, and we got very close. I love her dearly and I miss her terribly. I don't understand. So I feel for you...sisters are so important and I am trying to teach my young daughters how very important they are to eachother and I do everything in my power to promote a healthy realtionship between them...especially since I am an older mom and will most likely not be around for the really important things in life...I hope so...but it is so important they learn to love eachother and accept eachothers individuality.

Anyway...on with other news. I was so relieved today when my sister in law called and said she is going to stay for at least two weeks...longer if we need her to help me recover. I am so lucky to have her. She is going to bring my 18 year old niece who adores the girls and is going to help. As I said earlier, we went out and helped her for two weeks during her recovery this past October. She has been a wealth of information. She has basically said that it is pretty unrealistic to think that I will go home the day after surgery...she was in for 3 days with just a vaginal hysterectomy with no complications. She said that the fact that I am having the pelvic floor reconstruction, likely appendectomy, Laparoscopy...I should plan on staying for 3 days and not rush myself to exit. She says to treat it as the only vacation I get! HA HA...

Something is telling me that this will be similar to childbirth, something I found bearable with out pain meds or epidural. I had horrible episiotomies and tears and still did really well with it. Maybe if I keep looking at it this way, it will be better than childbirth...I read someones post that they thought it was less painful than a C-Section.

Is anyone else going to voluntarily fast before surgery to make sure their bowels are empty? Sounds like a good idea??? I am also wondering that they do for pain right out of surgery. I am sort of worried about it because I take pain medication and have for 3 years for chronic pain and I am worried that it may make things worse. Also, morphine makes me horribly sick and I do alot better with demerol. If you choose to have an epidural, do they leavev the epidural in place after surgery to help control pain or do they take it out right away. I know they will do what is best for me...I just hope I float right through it.

Terri

Terri,

You should inform the anesthesiologist and your doc that morphine makes you nauseous (sp), and ask about keeping the epidural in. They may allow it for pain control, or they may not, but be sure to ask... I've found that most anesthesiologists are more than willing to listen and work with their patients... you're the one who has experience with you! If they're unwilling to listen, ask for someone else... I had to do this when I had my twins. The 1st anesthesiologist wouldn't listen and poked me 2x trying to get an IV in. I told her to find me someone else. Yes, she stormed off in a huff, but instead of having all of my veins in my arms and hands blown, I only had those 2 blown and let the staff know that I knew my body!!! I didn't have any other problems during that hospital stay. They listened to every word that I said!

Remember, you know you best!

Terri-
I was told that if I have an epidural I will not have to have a morphine drip (morphine makes me sick too). I didn't want the after-effects of general anesthesia or the morphine pump, so I am going with the epidural. I am going to the castle tomorrow morning --- will let you know by early next week how it all worked out.

As far as the whole sister thing goes --- you are so right to teach your girls that their sisters can be the best friends they ever had. But as I've learned, they can also turn on you ---- something that I NEVER expected. My sister and I have been close through everything and now, because she is unhappy, she is blaming everything on her hysterectomy, and wants me to live with this pain and discomfort because of that. She claims her mood swings, loss of libido, and weight gain are all due to her hyst. For the last 4 years she's been singing the praises of a hyst, but all of a sudden, everything that goes wrong is because of the surgery. My theory is --- you might want to have sex if you actually liked your husband, your mood swings are due to the fact that the 2 of you are always fighting and the fact that you resent him for making you move and for making you stay at a job you hate, and your weight gain can be attributed to aging (she just turned 45).

Your sister sounds equally as selfish --- your daughters' health is obviously much more important than your presence at her 3rd wedding! You should turn the tables on her and tell her how uncaring and selfish she is to think that you could spend the time and money to travel to her wedding instead of staying home to care for your children! If her marriage is going to last a lifetime, there will be many more opportunities for you to celebrate it with her and she should grow up and look beyond her own small world.

Wow! I think I am starting to get this figured out! I could not figure out why no one was replying to me thinking that maybe I was saying something offensive?? I just figured out how to access private messages and found the deluge of supportive posts from people. Thank you all so much. Funny thing happened, since I sent my step mom and my father the e-mail describing in graphic detain why I need a hysterectomy, I have not heard a word from them. They are probably still sitting in fromt of their computers with their chins on the floor in morbid disgust (I mean it was graphic) and don't know what to do. I think it is more than a little bit funny. What do you say to someone who just dumped their entire list of detailed problems with their sexual organs in what they believe was an unprovoked e-mail?

My belly has been so sore that I wish I was going to have this surgery tomorrow...or even in an hour. I just broke down and took a pain pill and I am certain it will make me grumpy the rest of the day (not that I didn't already start my day that way). I did go to Walmart today and brought my celebratory box of tampons! Just think of what we will be able to do with all the money we save on tampons and (in my case) diapers (rather than the conventional kotex which is too small). My h usband , a Federal Police Officer, is going to work and sharing with his buds what he plans to do with the money....I am so glad that my impending doom of my womanhood is providing a group of boyish police officers some humour in their otherwise boring lives! Ha Ha. I always thought that tampons were over rates anyway...not to mention the diapers.

Anyway, I will go now and try to fix my profile. Hope everyone has a sunny day and thanks again for all the great support.

Terri,

My sister and I have never been close. We are two very different people. I am ashamed to say that I was amazed and surprised how much support she has been. It just goes to show you never can tell.

I had to laugh about your husband sharing with the boys what he is going to do with the money saved from lack of tampons and diapers...

Tell him that there won't be any money left over, you are going to spend it on sexy underware and lingere and see if he wants to share that.

Afterall, a princess deserves to pamper herself.

Give your family time, you will always love them, even if you could strangle them.

Terri,

I think the key to your family's lack of support lies in your own post. Both your mother and your step mother are telling you they think you are making a terrible mistake... and both of them have had hysterectomies. They are speaking from personal experience and, in your step mother's case, vast medical experience. Clearly, they all love you and do not want to see you suffer the consequences they are now experiencing.

My mother was very "supportive" and encouraged me to go ahead. She is now incapable of understanding all my post-op complications or how the surgery completely ruined my sex life as she is still an intact woman. My support now comes from other women who are also experiencing negative outcomes.

In my personal experience, the voice of experienced women is much more accurate than the doctors who told me I would "be better than ever", or worse yet, the ones who, post-op, told me my sexual dysfunction was "all in my head." Thankfully, I am now seeing real experts who easily recognized and diagnosed the problems but no matter how good they are at recognizing damage they cannot restore me to my former self.

It should also be noted that I have to stent myself to empty my bowels and have bladder problems, neither of which existed before my surgery. My hysterectomy caused these problems, they did not cure them. Neither did it take away any pain. My pain is much worse now than ever before. You need to know that there are no guarantees and weigh the risk to your overall health very carefully.

Also, please note: When I say "experienced" women, I am talking about women who are a least two years post-op; as the first few years, especially the first six months, can be misleading as to what is to come. Ask very specific, detailed questions if you want to get specific, detailed answers.

My suggestion would be to make your best effort at receiving, with an open mind, any information your loved ones wish to pass on to you at this point. If you graciously accept it, consider what they are saying, and then make your decision based on ALL the information available, you will have the piece of mind of knowing you did your best for yourself. (I live everyday with the regret of not fully informing myself before my operation.)

A book that might help you carry on an informative, non-confrontational conversation with your family is, "Your Guide to Hysterectomy, Ovary Removal, & Hormone Replacement" by Elizabeth Plourde.

A web site you might want to check out is: www.alternativesurgery.com

You said yourself that you put yourself last when it comes to health care. NOW is the time to put yourself FIRST and become a walking expert on your condition and all possible options and treatments. Then you will be able field the concerns of your family in an easy, non confrontational way without getting so upset.

If you burn bridges now, and later, God forbid, end up on the wrong side of the fence after surgery, (there is no to tell before which side you will come down on) you will want and need the support of your family.

I hope everything works out well for you.

Honey, do what you feel is right for you. Let your relatives spin around in their own private universes. That's what I had to do. It is not an easy decision, and I personally have felt very alone at times. But, when they don't agree or support you, you have to stand up and be strong in your choices.

Blessings and prayers for strength go out to you.
Janet

I am so sorry you have all those problems with your family. I am having the opposite problem. I went for my pre-op appt. Weds and took seven pages of questions. My doc couldn't answer most. He claims never to have even heard that the ovaries could fail. Leading surgeon in the area my butt. When I brought this up to members of my family, they said I am being rude. He is the doc and knows what is best. I should just do what he says when he says it. That is not me. I want to be informed. Oh well. I guess each family has there own sort of issues. Best of luck to you. In your situation, I would feel the same way. No matter what, it is your choice and only you have to live with it. Tell them to butt out.

WOWIE Yes you needed to vent! I'm so sorry your family is being obnoxious. I wish you could have their support, but that doesn't sound very likely.

The bottom line is: YOU NEED THIS SURGERY. You're a big girl, you've made up your mind, end of story. There is no need for you to keep suffering like this. You sound a lot like the condition I was in before my procedure.

Chances are you will have to simply take a hard line with your family members and tell them something resembling MYOB. You live in your body; they don't.

I'm glad you have this place to come and vent, and I hope the support here can at least somewhat offset what you are getting from your family.