Freaking out about Complete Hysterectomy

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Lynne3times
Lynne3times Member Posts: 53
edited June 2014 in Genetic Testing
Freaking out about Complete Hysterectomy
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  • Lynne3times
    Lynne3times Member Posts: 53
    edited August 2010

    Hi Ladies, have questions and looking for advice on complete/total hysterectomy scheduled for Sept 2nd. After 3rd diag with BC had BMX in Jan 09, got BRCA1 positive results May 09 but was already working on IGAP recon plans/surgery which took up the rest of the year (inital recon attempt of implants failed due to radiation in the past). March 2010 had prophylactic ooph/salpingo and yes you guessed it, had fallopian tube cancer, managed to be that 2 percent that has it and doesn't know it. Just finished chemo last week and now am scheduled for complete hysterectomy and removal of part of the omentum (didn't even know this body part existed!) and lymph node biopsies and any other biospy as they deem necessary while they are in there. Surgery will be done using the Da Vinci robot.

    Here is the part that is freaking me out and I need advice on, I am completely grossed out that they are going to remove my cervix and in essence sew the top of my vagina shut. I have been through so much w/BC and this entire journey, but removing my cervix is sending me into a panic. I really need to know if it is as bad I am making it out to be in my mind, my surgeon said I will build up scar tissue there and will be able to continue to have sex.

    The rational part of my brain understands the necessity, knows I am really quite lucky for the fallopian tube cancer to be found when it was, it is a palative stage 1, they won't be able to definitively stage it until this surgery, but the emotional part of my brain is screaming, WTF, haven't I already been through enough and does every single female part of mine need to be surgically removed!!!! And you gonna sew my vagina shut, are you f&*cing kidding me?

    So ladies, in a nutshell there you have it, my deepest fears about this latest development, anyone who has gone through this and can let me know what things I might expect would be really appreciated. Lynne4times.

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  • scrappy_survivor
    scrappy_survivor Member Posts: 149
    edited August 2010

    I had a total hysto & dbl mast. I can honestly say that not having a cervix has not changed my sex life one little bit. THe thing I deal with most is not having a libedo. I don't ahve  aproblem with lubrication just a lack of libedo so as long as hubby starts it I force myself & usually 1/2 way through I warm up to the mood. Good luck!

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  • violet7
    violet7 Member Posts: 180
    edited August 2010

    I had a radical hysterectomy in November 2008 for endocervical cancer.  My cervix (along with everything else + ovaries) was removed as well as 1/4 inch of the top of my vagina, so I have the vaginal cuff you are speaking of.  I rarely give it a thought anymore.  Of course, I'm distracted with the breast cancer dx in October 2009, the bilateral masectomy, and the chemo I recently finished.  After recovering from the hysterectomy I don't believe that there is any difference at all.  The site Hystersisters was a great help to me following my hysterectomy.  There are a lot of nice, helpful ladies on board.

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  • Lynne3times
    Lynne3times Member Posts: 53
    edited August 2010

    Thank you scrappy and violet, I am looking to hear that all will eventually be well in the sex department. It is encouraging to hear you both say that you don't notice your cervix being gone. Violet, thanks for the info about hystersisters I will definately check it out. We are opposites, in that the Fallopian Tube cancer distracted me from my latest BC diag, and bi-lat mx and recon, funny how that goes..... another thing caught my eye in that we are all triple neg. (I just updated by bio so you might not see it yet)

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  • cassou1
    cassou1 Member Posts: 31
    edited August 2010

    i,too had everything removed in jan. '09. sex use to be painful, not anymore.

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  • Wren
    Wren Member Posts: 324
    edited August 2010

    Lynn,

    I am having the same procedure done on the exact same date. I've already had one ovary removed about 5 or 6 years ago--before I had cancer, and the bilateral mastectomy with reconstruction.

    This surgery will remove everything that is left, including the cervix.

     I will be thinking of you and hoping, like you, that it all works out OK.

    Hugs!

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  • jacee
    jacee Member Posts: 1,384
    edited August 2010

    Had total hyst/ooph 4 weeks before my mx. My surgery was all done vaginally and I had NO pain whatsoever afterward. It was amazing. My cervix was removed as well. Dryness has been the biggest difference, but that is easily fixed. And after thinking my libido was gone for good, now a year later, it has returned. It is ...... like you say, very unsettling to lose ALL your female anatomy!  But, life does return, and normal takes on a new meaning.

    Best of luck to you!!

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  • Lynne3times
    Lynne3times Member Posts: 53
    edited August 2010

    Thanks Jacee and Cassou1 for posting. I know I need to get an attitude adjustment about this and soon, hearing from others saying that it isn't so bad has helped. Part of me is just resentful of having to continually adjust to new normals but I know you all understand this very well. The three times I had BR cancer I was never really angry, sometimes scared but also very determined to get through what I needed to and move on with life. This time I am just plain mad that cancer is taking away even more. I think it is getting harder each time and I just wasn't expecting the fallopian tube cancer which has brought a whole new dimension of cancer treatment to my life.

    Wren, please keep in touch, I know we will both be home for a little while recovering. Hopefully we will get through this surgery relatively easily like Jacee did. Good luck to you and I will be thinking of you. PS: we sure know how to spend a labor day weekend done we? lol, Take care, Lynne

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  • Susie123
    Susie123 Member Posts: 804
    edited August 2010

    Lynne & Wren,

    I had a complete hysterectomy, including cervix removal about 4 years ago. The procedure itself wasn't nearly as bad a I thought it would be and I have no lasting SE from it. I put it off for years because I was afraid of it. If I had it to do all over again, I would have had it years earlier. No sexual issues either. Best to both of you!

    Susie 

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  • Trishia
    Trishia Member Posts: 572
    edited August 2010

    I'm so happy to read this thread.  I'm scheduled for a hyterectomy (including cervix removal), removal of the right ovary and both fallopian tubes on 9/1.  I'm going to a gyn/onc who does the da vinci method. If my left ovary looks healthy, he'll keep it, if it doesn't, he'll take it.  I haven't had any growths on it, unlike my right ovary, so I'm hopeful.  I've been putting this off for over a year. 

    Sex is very important to me, so I'm happy to read that you aren't experiencing issues with weak orgasms or inability to orgasm afterwards. Lubrication is an easy problem to deal with. I'm hoping that my biggest issue with sex will be the 8 week restriction he places on his patients.  8 weeks?!?!?  Are you kidding me?!?!?  

    Have any of you had a problem with incontinence after cervix and uterus removal?  I do know that it is an increased risk.  My LE therapist also specializes in pelvic floor issues and pretty much the only thing I can do preventatively is tons of kegels.  

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  • motheroffoursons
    motheroffoursons Member Posts: 333
    edited August 2010
    Bladder problems improved for me after my TAH/BSO.  I had a huge dermoid cyst and I think the cyst was putting pressure on my bladder.  Just so much room down there, something has to get squished when a big cyst grows.Laughing
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  • Lynne3times
    Lynne3times Member Posts: 53
    edited August 2010

    Hey Trishia, I am glad you found us too. You'll have to post after surgery to let us know how you are doing. My doctor didn't tell me anything about possible incontinence. I have another appt w/him before the surgery, I will need to ask him about it. He probably didn't go over too much with me because I couldn't stop crying when he told me that my cervix was going to be removed. I tend to react to things like that, cry first and then put on the big girl panties, lol. Good Luck!

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  • happymom8285
    happymom8285 Member Posts: 205
    edited August 2010

    Had a complete hysterectomy in 2000.  I was 47.  Had already gone through premature ovarian failure.  As I like to say, the equipment is gone, but the playground is still there. :).  Have not had any bladder issues.  Was able to remove it vaginally and I felt great!  Still do.  My gyn told me he'd done 1,000's and not one patient had come to ask him to put it back!  Now, I've been completely "neutered" since my BMX 6 weeks ago.  But I'm GOOD!!  The libido, tho, really, is totally lacking!!  That's the biggest sucky part. Dr. gave me one testoterone shot a couple years ago, but it did nothing. No more estrogen, so no more lubrication.  I can deal with the dryness, but I wish there were a pill for my libido!  Hubby of 32 years has been a total ROCK!  That helps, but I feel bad for him at times.  I see my gyn for my yearly in Sept.  Am def. going to ask him if there's any hope for my libido. lol.  Hope you do well.  And, really, once you've healed, you'll be fine.  You can always vent here!

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  • Lynne3times
    Lynne3times Member Posts: 53
    edited August 2010

    happymom, I love your sense of humor! Thank you! I love this site, people that have been there and truly understand and support each other. I went into menopause naturally a little earlier than most at 44 and have been dealing with vaginal dryness since my 30's. After menopause it got really bad where even the lubricants did not seem to help all that much. So part of me I think is thinking it is all going to get even worse. My surgical onc did say that since all my BC was Trip Neg, that I would be a candidate for a low level vaginal estrogen cream. (once I was fully healed of course)  He assured me that my vagina could return to a "lush" state. I haven't really researched any of this yet, but I am hoping........, Everytime I think of the word lush in this context, I think of my vagina with green, green grass and palm trees, lol

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  • Wren
    Wren Member Posts: 324
    edited August 2010

    Lynne, that is a funny image of your green green grass!

    Trisha, I'm having the DaVinci robot hysterectomy too. I'm hoping it will be as good as it sounds for the shorter recovery time. I'll be having mine the day after you have yours.

    Susie, thanks for sharing a positive experience too. I know that is what I need to hear to know that others have had successful outcomes.

    Well, Trisha and Lynne, I will be looking for you after we are home from surgery! I pray that we all have speedy recoveries too.

    Hugs!

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  • Trishia
    Trishia Member Posts: 572
    edited August 2010

    Hi ladies!

     Thanks for the warm welcome and for allowing me to bust my way into this thread...LOL!   Lynne we are back to back...the 1st and 2nd.  Do you have to do a bowel prep?  I can't eat solid foods for 2 days prior PLUS do a bowel prep.  BLECKY!!!  

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  • Lynne3times
    Lynne3times Member Posts: 53
    edited August 2010

    Hey Trishia,

    Yes I have to do the bowel prep too. I had to do it once before for the ooph/salpingo. It wasn't quite as bad as I expected although I have not had any orange gaterade since! I think I am going to try crystal light or something this time. I wasn't told to not eat anything solid for two days before so that would bother me going that long without eating real food. When I got hungry before I had a cup of beef bouillion. I have another appt with surgeon on Monday, so his office might tell me about the 2 day thing that at that time. Oh the things we get to look forward to..... I am sitting here typing waiting to go to PET scan appt this morning and all I want is coffee!!!!

    I don't know what kind of bowel prep they have you doing, but mine was with Miralax and they didn't tell me what size bottle to get and I got the small one after talking to the pharmacist. She was wrong, had to run back to store halfway through drinking the stuff.......thank goodness it hadn't started to work yet! Am I getting too personal here? LOL. so if it is Miralax, get the big bottle!!!!

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  • NatureGrrl
    NatureGrrl Member Posts: 1,367
    edited August 2010

    Just chiming in to add that I had a total hysterectomy 11 years ago (well before bc) and never had a problem with enjoying sex as a result. Orgasms, no issue either.  Also have never had incontinence problems.  The prep for surgery wasn't nearly as bad as the prep I've had for some subsequent tests but you don't want the details :) 

    The surgery is much less invasive now than when I had it (I had the full cut, nearly hipbone to hipbone, but I had other stuff they had to deal with besides the hysterectomy, too) so your recovery times should be OK.  Just don't push yourselves too hard after; listen to your body and let it take whatever time it needs to heal.

    My libido is way down now but only after bc treatment last summer/fall... it's discouraging but since I don't have a partner it's mostly a non-issue for now. 

    My best to all.

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  • happymom8285
    happymom8285 Member Posts: 205
    edited August 2010

    Trishia and Lynne, I don't remember having to prep my bowels.  :)  But maybe it's for concenience sake that I don't?  It was all removed vaginally, no stitches, it really was the best!

    Lynne, I absolutely fell out reading about your "lushness".  There was a song, long time ago, about the "green, green grass of home".  Is your dr guarenteeing this?  Cuz, if he is, I want to make an app't!!

    I truly hope everything goes well for you both.  Make sure you let us know how you're doing!

    Laughter is good medicene.

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  • happymom8285
    happymom8285 Member Posts: 205
    edited August 2010

    Oh.  And I forgot.  As long as I stay off trampolines, I'm all right!  :)

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  • Lynne3times
    Lynne3times Member Posts: 53
    edited August 2010

    Happymom, omg, I almost fell on the floor about green green grass of home, I am old enough to remember that song.......however, that song is a little too midwestern for the tropical lushness I have envisioned, I think that song Red Red Wine is more what I had in mind, LOL!!!!!

    I'll have to get back to you regarding the estrogen cream effectiveness, if it works I could probably sell his phone number and cover my copays, deductibles and co-insurance for life! hee hee

    Thanks naturegrrl for posting and your words of wisdom. I think I am beginning to chill out after all you great ladies have posted, it is certainly not the end of the world but sometimes during this journey we fixate on certain things and this for me was one of them which I am sure is normal. Just finished chemo 3 weeks ago, and I have been tired and cranky and like my mom used to sometimes say when we were little and drove her nuts, "I've had it up to here!".

    Lynne

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  • Trishia
    Trishia Member Posts: 572
    edited August 2010

    Okay...I leave tomorrow for sugery.  ACK!  I can't believe it's almost Wednesday.  We don't have a gyn/onc here so I have to travel for sugery.  I'm not BRCA, but LFS (p53 mutation) so still high risk.


    I'm having it done with the Da Vinci robot, but because my uterus is so big he is not sure he can get it out whole. He is comfortable morcellating it, but I dont' know if that is a good idea with my genetics. The only way they can 100% be sure that all of my gaziilion fibroids are actually benign fibroids and a not any leiomyosarcomas is to biopsy them. And if he cuts up a cancerous tumor, then the cancer cells can spread and 'seed' my entire pelvis. Ugh. So I have to decide to take the risk or to have him open my abdomen up if he can't get it out vaginally. I hate these kinds of decisions. 

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  • Lynne3times
    Lynne3times Member Posts: 53
    edited August 2010

    Trisha, While I am not up to speed on what LFS really is, I get the jist and it all pretty much stinks that you have to make those kinds of decisions. Can things get any more complicated, can't they just be straight forward once in a while. GEEZZ!!  I wish I knew more on this subject but I don't so I am simply going to wish you the best and hope that you sail through this surgery, whatever you decide. Let us know how you are doing and we will be thinking of you. You too Wren!

    I went to Dr's yesterday, PET scan came out good, yeah!!!! Platelet count as of last Thursday was 81 and too low for surgery, going back today to get blood drawn again to see if it improved otherwise surgery will be delayed a couple weeks.

    Take care, Lynne

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  • Lynne3times
    Lynne3times Member Posts: 53
    edited September 2010

    Trisha/Wren:

    Just a short note to let you know I survived surgery. Was in hospital overnight, swelled up like a stuffed pig, but most swelling is down now. Doing better than I thought I would be at this point, was actually able to lay down on side on bed for an hour this am, been sleeping in recliner since surgery might try bed tonight, (it's the little things). Passed out and banged head in bathroom right after 1st shower at home, probably too little food, mixed w/pain meds and heat from shower. Scared the you know what out of DH. Am fine though. Dr. said he thought things looked good, will see next week when get path reports. Hope you are both doing well. Lynne

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  • Trishia
    Trishia Member Posts: 572
    edited September 2010

    Hi Lynne!!

    So glad you were able to have your surgery and doing well.  Sorry about the passing out...that's no good!!  

     My surgery went really well.  They were able to remove it vaginally, despite it's huge size, because it was so malleable (and all the kegels I do...LOL).  I was also able to keep one ovary. Doc said everything looked really good, but won't know 100% until pathology is back...hopefully tomorrow.  He made me a DVD of the procedure...pretty amazing!

    Today is one week post op and I feel fabulous.  I have to remind myself to take it easy.  The first couple of days were rough because of the gas pains.  I haven't had any narcotic pain meds since 4 hours post op...just tylenol or advil.   No spotting since day 3 either.  

    Hope you are doing well today and not falling down!  :)

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  • Trishia
    Trishia Member Posts: 572
    edited September 2010

    I am so glad that I listened to my gut and to you lovely ladies. My doctor called with the initial pathology and one of the fibroids was atypical and pre-cancerous. He said I must have had a moment of divine intervention. I am so thankful and so blessed.

    He is sending it out to a specialist because atypical fibroids are so rare. We will go over that at my 8 week followup unless it comes back more serious than the initial pathology.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2010

    I had my TAH/BSO (everything removed abdominally due to ovarian rupture) almost 5.5 years ago and no problems here with sex or incontinence. The first year was really rough recovering from major abdominal surgery and having immediate surgical menopause at the same time. Glad to hear both of you were able to have it done laproscopically--it's less painful and the recovery is quicker.

    Anne

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  • happymom8285
    happymom8285 Member Posts: 205
    edited September 2010

    Trishia/Lynne

    Sooooo happy and glad you guys are doing ok.  Except for the bumped head and stuffed piggy!

    That's good news.

    Trishia hope the rest of the path comes back looking really good. 

    I have a new one for your "lushness", too.......How Green Was My Valley.  Remember that movie?? 

    Anyway, really happy the recovery is going well.  Take it easy and don't overdo.

    {{{{{{{HUGS}}}}}}}

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  • Twylight
    Twylight Member Posts: 60
    edited September 2010

    Happymom, I'm scheduled for a total hyst/oop to be removed vaginally on 10/13, and I have absolutely no idea what to expect as far as how I will feel postop.  All I know is that it will be three incisions made, one below my navel, and two on either side of my groin. Jacee said that she experienced no pain, but did you have pain at all?  If so, how severe?

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  • Lynne3times
    Lynne3times Member Posts: 53
    edited September 2010

    Happymom, thanks so much for the well wishes. Met with my surgeon yesterday and EVERYTHING was benign. I was so happy and relieved. It looks like this might be the beginning of the end of this journey.

    Twylight, I was a little premature when I posted earlier that I was doing well (must have been the percocet talking) anyhow, it is 2 weeks post surgery and I still have some discomfort/pressure in the lower abdominal area which my surgeon said was normal since underneath those 5 laproscopic incisions is major surgery with a lot of surface area that is affected. I am not back to work yet and truly taking it easy. I was only 1 month off of chemo before surgery and it is going to take a little longer to heal because my blood counts were behind the 8-ball to begin with. Plus I had 22 lymph nodes removed from abdomen and part of the omentum removed. Each day is getting a little better, just be sure to have the Dr. prescribe your favorite pain medication and BE SURE TO TAKE IT. (for some insane reason I thought I didn't need it anymore, was in pain and wondering why, duh!!!!) It is doable and you will be ok, please post if you have any questions no matter how silly you may think they are, you wouldn't believe some of the questions I fired away at my surgeon. good luck and keep us posted. oh yes, one more thing, be sure to take stool softeners or whatever works for you so that BM's are not painful. They really stressed that to me in the hospital, I heeded their advice and am really glad I did. Lynne

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