Finally Scheduled and Oh So Sad

I'm scheduled to have TVH-BSO (though that's not quite accurate as I think the ovaries and tubes are coming out LAVH, but the rest is TVH) and it's all supposed to go on 3/4/04. I originally posted to Hystersisters a little over a year ago. My mom died of ovarian cancer in her early 30's, almost 30 years ago. Breast cancer on both sides of my family and Colon cancer as well...so recommendation 1 year ago at 41 was to have this surgery done. I am just too high risk.

I went for a 2nd opinion (really a 3rd if I count my D.O. who was the first to strongly recommend it) and the 2nd Gyn made me think I was nuts for even considering it. Told me I was basically considering 'smundlation' for a very small risk. Her words. A year later and a few problems later I happen to mention to my D.O. some issues I'm having and he's ALL over me as he thought I'd had the surgery a year ago. He reminded me that the GYN he initially referred me to is extremely highly regarded in this area, is not scalpel happy and if he says do it, then get it done. So, back to him I go. Within 20 minutes it's decided that I absolutely must take this seriously, I am a very high risk candidate for ovarian cancer and I can either take the chance or get rid of everything. So, now I have a date. I am so, so sad.

For some stupid reason I feel like some part of my womanhood is going to be stripped away (and of course, I suppose some of that is just plain FEAR that they may find cancer) My so called friends are not being friends at all, saying that 'lot's of women are having hysterectomies today, it's not a big deal!' Well, it IS a big deal! I'm losing my ovaries, my cervix, my uterus, my tubes, all of it!

I'm sorry, I just had to post in hopes that someone would have been in my place and be able to understand. And, I am grateful at the same time. At least I'm not in the position my mom was when she was so young.

Sorry about your sadness. I'm not your exact position but you are doing the right thing for your health. I have to admit, when you posted about your friends not being supportive, I felt guilty. Last year my best friend had a hysterectomy with a tummy tuck. I congradulated her on how lucky she was to get a tummy tuck paid for by her insurance company. Little did I know what an insensitive a$$ I was being, and would soon be in the same position. We've had some good talks since I have been diagnosed. I just didn't understand until I too was in the same position.

This surgery is so psychological for us women. The waiting is terrible, the thoughts of our mortality loom, and we're experiencing thoughts and feeling that no one else can relate too. Except for those on this board of course!

Dear Sister,
Yes it's a regular occurance in the female population, but it is a big deal cuz it's happening to you and it's major surgery! With everything that entails!
I'm sorry you feel so sad. I had to wait 9 weeks and I remember feeling everything under the sun; sadness, grief, anxiety, fear. But mostly shock!
When i found out I was going to need this surgery to mitigate the pain in my back (tipped uterus with a big ol' fibroid) and the heavy hemorage-like bleeding, I went into shock. I originally started out pursuing thermal ablation, then when they found "Boris and all his little buddies" had taken up residence in my uterus (I named the big one for a little comic relief) it was supposed to be a myomectomy. Then the doc discovered that the location warranted a full hyster. The only way to get rid of Boris was to demo the house! AAAHHH!!!

I had them take the ovaries (one Hsister named them for me: rocky and bullwinkle) as well for the same reasons as you, i'm high risk. I lost both grandmothers (one to uterine cancer in her 30s) and my mother to cancer as well as other female relatives.

You didn't really say what your issues were that prompted your further discussion with your D.O., other than your high risk status. for me? it was quality of life and the pain. The ovaries were my choice for the same reasons, why risk the cancer possibilities.
At the end of the day, I don't feel any less of a woman. I feel better and I like myself more now than before. My husband's happier at not seeing me so miserable. There are lots of women, including the HSisters on this site, who have seen me through the whole gamut of emotions and encouraged me through them all. For me I had to work my way through the sadness, the fear of death, fear of pain from recovery, change in life,etc. You will too. It's all very normal and part of the process. Waiting is the worst part.
Posting on HS was cathartic for me as well as getting the support I needed. My husband travels alot and wasn't around on the weekends during my waiting period. So keep posting when you need to. Plenty of us will be listening (reading)

peg

Dear Thinningdown,

I had my hysterectomy for severe chronic pain from adenomyosis -- I caught your post because the words "oh so sad" describe my feelings before, during and after about the procedure, the loss of my uterus and the loss of my ability to bear children. For me, my quality of life had deteriorated substantially to the point where it had to be done -- I could not live with the pain. Yet the time I spent researching my options, considering a second opinion and working through some of my grieving ahead of time helped me a great deal. If you have time to work with, and can live with symptoms that are not life-threatening, it may be worth talking to a counselor and beginning to work through some of your grieving ahead of time before having the surgery.

I am one year post-op, and the hysterectomy relieved horrible pain for me. And yet, to be honest, I am sometimes still sad and also sometimes, I do feel like less of a woman because of the surgery. It is a big deal. Please do not minimize the impact to yourself, your body and your psyche, no matter what your friends say.

I am not sorry I had a hysterectomy. I do not miss what had become for me unbearable pain. I do not dwell every day on the fact that I had a hysterectomy, especially now that I am fully healed from the surgery. But I do miss my uterus, I do miss the ability to bear children and I do, when it strikes me, and it does unawares, feel less whole. It isn't a horrifying "I did the wrong thing" feeling, but it is a profound sadness and emptyness that has not yet gone away. It may with time. I guess I am just trying to prepare you and encourage you to work through some of your feelings, either alone or with help, before leaping into the major life-altering medical procedure.

With love and light,
Loretta

I had my TAH/BSO 4 weeks ago for different reasons to you, but as I am around your age (42) I feel I can say to you that you will still be as much of a woman afterwards as before, please don't worry about that.
I realise that everyone feels differently - I was in a lot of physical pain before surgery which I hope will now be banished forever, but you are obviously in a lot of emotional pain. The surgery is a very large thing in your life at the moment, but please look forward to the time a few weeks after surgery where you realise that you are recovering and that the future is starting to look good again - it WILL come.
Wishing you a quick recovery
Heather

hi---- i really think that we all need to understand that unless people have had personal or very close experience with something , they really are incapable of understanding it.
one of my friends was telling me how "lucky" i was going to be to get a month off, and also how much paperwork I could get done in that month. they really don't understand. that is why it is so helpful to have this group.

anything that i am wondering about or worried about , it is clear that someone else feels the same way. and the issue about womanhood is definitely something i would guess most of us think about.

i have only been talking about my scheduled hyst with those who get it. hugs, nancie

Dear Sister;
Along with all that you are feeling (I just started my own post about that), I know that you will be remembering the hope and future that this particular surgery will afford you, as compared to your dear mother. That being said, it doesn't change all the shades of emotions you are experiencing. Your comment about your "friends" really struck a note with me. I'll admit, outside of family I have only told two people because they are the owners of the agency I work for and need to know, but I have also considered them my friends. Well, if that is the response I am going to get overall, no thank you! I do know that unless you have experienced something yourself, you can't truly understand it. That should not keep anyone from feeling empathy and concern and caring for one another. Even my most wonderful DH admits that there is no way he gets alot of what I am feeling, but he is always there to do whatever he can, even if it is just a footrub, or listening, or a hug. Again, thank goodness for this site because there is support abounding here and I for one am needing it bigtime today!
Remember that I will be thinking of you and sending lots of smiles and hugs your way, every day! Leslie

If the only reason you are considering a hyst is for prevention of ovarian cancer - have you thought of seeing a genetic counselor first to determine whether you are actually at increased risk?

My other thought is why are you having your uterus removed?

I was in a similar situation - my mother had breast ovarian and colon cancer. After her ovarian diagnosis, I had sought counseling about whether to have preventive surgery. The recomendation I received was to consider having my ovaries removed. But during some testing, it was discovered I already had signs of ovarian cancer (elevated CA-125) so that knocked out the plan to do just a BSO.

I feel fine now - but is WAS a big deal emotionally and I hated giving up my body parts. The physical recovery was fine and I am glad my cancer was caught very early, but if I could have kept anything, I would have.

Dorrie

All I can say is Bless your heart. I am supposed to get to keep my ovaries so I don't know exactly how you feel but I understand the feeling of loss a little bit.
Hang in there and I will pray for you. Friends can be really dumb sometimes, even when they are trying to be supportive.
You have a large cheering section on this board.
We all know you are being totally normal in how you feel.
Hugz and love your way,

I had a LAVH and they took everything due to endo, I am 46 and did not want to go back into surgery in a few years to get the rest so I had everything taken out. Now my little sister is 41 and called and is having her hyster on March 19 and I did not know what to say to her when she called. Here I am recovering from this surgery and can't offer words to my own sister. IT is a very emotional and personal surgery. SHe told me when I told her is was hard for her to find any words to help me, and she is a ATTORNEY, meaning big mouth. So when people say things you don't want to hear cut them slack as it is hard to find the right words. Good luck and Aloha Ellie PS I am getting through all the emotions with buying little things like make up, body lotions, and watching QVC