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Embarrassed and ashamed . . . . Embarrassed and ashamed . . . .

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  #1  
Unread 09-24-2005, 03:12 AM
Embarrassed and ashamed . . . .

I've never posted here, but I guess I just need to vent to others that might have felt like you were hanging at the end of the rope for dear life! I don't understand what is wrong with me . . . . nothing seems to work anymore and I just feel like crawling underneath a rock and hiding from everyone! I am almost 8 months post op and still waiting for the day that I will feel normal again, but realizing that "normal" will probably not ever be the same again. I had to fill out my second set of FMLA papers at work today . . . . so once again starts the next round of questions and inquiries about my health problems. I get everything from you are too young for this, to are you taking vitamins, to you aren't eating enough, etc. etc.! People mean well, but really they have NO IDEA and I am not about to share my saga with them. This site has really been one of the few things that has kept me going these last several months, even so I am just at the point where I don't know how much more I can take. My hysterectomy in itself was a huge complication ~ catheter in for a month because I couldn't pee, four urinary infections in the first 12 weeks, major constipation due to the rectocele I didn't have repaired which resulted in hemmoraging at 3 weeks post op, anemia, vaginal/bladder irritation & pain that was FINALLY diagnosed (URO told me for several months I just needed to be patient) at almost 6 months post op as chronic yeast ~ by then systemic in the vagina, mouth and probably everywhere in between! I am now on a 3 month regiman of Diflucan and Nystatin. And to top all this off my reflux symptoms have become unbearable due to all the yeast AND all the iron and ibuprofen that ruined my LES (lower esophageal sphincter) muscle. Since my hysterectomy I've had an endoscopy, esophageal motility study, 24 hour PH monitoring, upper GI study, and now I am scheduled for a Laproscopic Reflux surgery in two weeks. Today the surgeon called and told me I need to arrive a day early (the hospital is 5 hours away) because when they did the upper GI last week he observed SOME OTHER ISSUES with digestion and now I need to have a gastric emptying study too! The only thing positive that comes out of all this is I met my out of pocket limit with the hysterectomy so I don't have to pay for any of this ! And to add to all this I think the rectocele (that my GYN encouraged me not to repair, said he thought intercourse would be too painful) is now prolapsing further or I'm developing an enterocele because I'm now having to splint when I have BM's. And intercourse has been painful for quite some time and pretty much doesn't happen anymore, but I had originally assumed it was from the yeast but now that I'm having the splinting issue I think it actually may be a prolapse issue. So the reality is the bladder repairs and catheter and pain I went through is all for nothing because now I think I'm prolapsing in all the other regions . . . . and I absolutely will not have another surgery to that area anytime in the near future. I am so embarrassed to admit that my body wasn't fixed the first time, could never acknowledge that to all the people I work with, people in my church, friends, etc. that I'm sure are tired of it all and thinking enough already!!!!! I don't know that there is anything you can say to help at this point I guess I just needed to have my own pity party! Thanks for listening to me rant and rave, I feel better already!

jmw
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  #2  
Unread 09-24-2005, 03:36 AM
Embarrassed and ashamed . . . .

Hi JMW
I just wanted to say that I do know exactly what you are going through. I am almost 17 motns post op from my TAH. I have had one complication after another. I have seen so many specialist and had so many tests done too.I had no repairs with my hyst. There were no symptoms of any prolapses. At 4 months I had my GB out,8 months I had a enterocele/rectocele repair.I had to splint to go the same as you. I do not regret having the surgery. at 16 months I just had a tvt and anterior repair.Now I have to see a neuro surgeon for herniated discs and other problems with the nerves in my back. Most likely another surgery. I get the same thing from my coworkers and friends. They seem to think I imagine the symptoms and act like I like having surgeries or something. Who in their right mind would want surgery?Some of these people say "don't let them cut on you again" well, sometimes we don't have a choice.
As far as your rectocele, I would highly suggest you get it fixed.My Gyn used pelvicol to reinforce the vagina.He said the pelvicol is pig material about the same consistency as vaginal tissue.He said the repair should last foreverand that intercourse would not be any different. The traditional suturing method does make the vagina tighter.With my repair there was no difference in size and intercourse was the same.
I know you didn't expect all of these complications post op. I sure didn't.Please know that we do understand what you are going through and how you feel. Alot of us are there with you now. This site is one place we can vent our frustrations and nobody judges you.
I do hope you consider getting that rectocele fixed. I developed a enterocele after my rectocele was diagnosed. Thank goodness my gyn was able to see it and they were both fixed at the same time.
Hang in there. It will get better. Never mind those other people you know who say uncaring things. They just don't understand what you are going through.
Peggy
  #3  
Unread 09-24-2005, 06:28 AM
Embarrassed and ashamed . . . .

i can relate somewhat to your story. i had my hyst. in 2003 thought everything was good came home felt GREAT, too great 5 days later was on the phone w/ DS started bleeding BAD!!! DS said "get in the tub put your feet up" i did i fillied my bath tub up with almost 2 inches of blood!! she called 911 they came rushed me to ER. they packed me up. (that hurts) said don't move for a day , and we will remove it tommrow.. well they did i go home, doing well 3 days go by BAM!! i wake to my bed covered, dripping with blood, by that time i was sooo worn out from 3 days before DH called 911 they came.by the time i was put on the streacher i looked at my hand that was hanging off the streacher the blood was puddling on the floor from my arm, it was in my hair all over my back EVERYWHERE (DH said it looked like someone was murdered,both times,but the last time was bad) so. i'm rushed to the ER. (it's only 5 minutes from my house) by then there was 5-10 dr's in my room running around, they were saying ' she's not going to make it"... they dropped my bed where my head was on the ground and my feet were up in the air, they packed the vagina, used silver nitrate (the vag cuff had reopened a little ) they gave me 4 units of a blood trasfusion i had a priest come in give me my last rights! and then we waited. they couldn't do surgery my BP was not spable enough. so the night went on i was in icu for the night i had made it. the packing stopped the bleeding and i woke up the next morning. well 8 months go by spotting, bleeding DR that did the hyst. was FIRED!i got a new DR. she did a lap. in aug of 2004 said the vag. cuff was sown up improperly. and scar tissue grew in the holes it had to be reopened and sown up right! so i was recovering from that surgery and bam i have a cyctocele and rectocele... so i had that done 6 weeks ago... it is a long road and i understand how you feel... were not alone and sometimes we all need to vent and feel sorry for ourselfs...take care and good luck
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  #4  
Unread 09-24-2005, 06:48 AM
Embarrassed and ashamed . . . .

jmw....
Listen SISTER!! You have absolutley NOTHING to be embarresed, or ashamed about!!! Boy have you come to the right place!! I think to an extent, we ALL have gotten the bad advice, uncarening comments, and the looks from supecting people who think your a dang hypocondriac because of our continueing complications!!
I actually was accused by a very close family just yesterday that I WAS ANORECSIC(sp)! I have been complaining for 4 years, after looseing almost 30 lbs (without trying ) that I cant gain weight!! That I feel like I'm starveing to death!! I've had the coloscopy dx: IBS Eat More Fiber! H.Pyloir bacteria. pains in my shoulder, between my shoulder blades, pain up under my ribs, thought it was my lungs. But still can't gain weight! I've heard...you don't eat right, don't drink enough water, and you smoke!! I too had many complications post hyst/bladder sling and had multiple surgeries and still am not right!!
I just went for a CT scan thursday..dx GALL STONES!! And my Doctor said this has been going on for quite awhile!! She said there are significate gall stones and the gall bladder walls are seriously inflamed!! JEEZE...COULD THIS BE THE REASON???
I know how much it hurts to have insenitve comments! You hold your head up lady!! You know your body best, not anybody knows it like you!! I can't express how important it is to be your own advocate!! No one else will! When one door closes....Run up and open another!! You diserve the BEST medical care..you diserve to FEEL your best!! You take care and don't forget were ALL here for you!!! Netty
  #5  
Unread 09-25-2005, 06:44 PM
Embarrassed and ashamed . . . .

Hi ((((jmw))),

I feel so terribly for all that you have been through, and that you are facing another surgery! You have provided so much support to me, and to so many other sisters on this site, I just wanted to send you some hugs. It seems that you are feeling completely overwhelmed at this point. Understandable...I know that feeling of having a laundry list of issues, and just as you check one off, another seems to crop up. I really think that once you get the yeast under control, and you get some relief from your unrelenting reflux, you will begin to feel a lot better. Then you can deal with the other stuff, as needed. Try not to get too ahead of yourself. I understand the embarrassment issues too - I feel that also at times. But it's certainly not *your* fault that things did not go as planned!

You are under a lot of stress right now - just try to bring yourself as much comfort as you can right now. Sending loads of extra hugs - use as needed!
  #6  
Unread 09-25-2005, 06:53 PM
Embarrassed and ashamed . . . .

Jmw

Just wanted to let you know that you are not alone, I have been right there with you concerning all of the questions and remarks from others. Sometimes we have to remember that it is nobody's business but our own!! We know our bodies the best, not everyone else. I get the same stuff about my age and the question of why are you still having pain after this major surgery!! I am 15 months post hyster, and I go thurs for another surgery for ORS (ovarian remnant syndrome) :hair: I have been where you are and totally understand! Please see about getting a help. You deserve to feel better, no matter what "everyone" says!!

Sending you many many "s
Mel
  #7  
Unread 09-25-2005, 07:32 PM
Embarrassed and ashamed . . . .

Just want to send big big s to all you ladies having such a rough time getting off the "Road". I so hope you all find that 'off ramp' very soon. Hang in there....there's brighter days ahead for you all.

  #8  
Unread 09-26-2005, 08:31 PM
Embarrassed and ashamed . . . .

Aw, (((jmw))) you have so much going on right now!!

You must be utterly exhausted.

There are a couple of things that I hope you'll be able to do... first, I see you've filled out your FMLA paperwork so it sounds like you're going to take some needed time off with this next procedure. That's good. I just had my second surgery in a year, and I was really sheepish about taking time off with this one. The day after the surgery, I was feeling so good I thought I might be back at work in a week, and my dad (who is also my boss at work, at least until he retires and I become the "big boss" LOL) said, "What are you thinking? Take the time. You're of absolutely no good to us when you're not 100%." Of course, he's right.

The other thing I hope you can do is ask for some help. I understand not wanting to bother other people, and even being embarrassed about having more surgery. But believe me, there are people out there who LIVE for this kind of stuff! All you probably have to do is drop a hint (or have a friend or co-worker who goes to the same church) to someone in the church office, and you'll have the "grandma brigade" out there to help you for as long as you want or need -- or they will at least bring you some meals or go pick up groceries and meds for you. If you feel it's too much to ask of them, make sure they know that once you're feeling better you'll help them out one day. Bring them some homemade bread (or some Godiva chocolates if you don't bake) as a thank-you.

What I'm trying to say is that I hope you'll be able to ask for some help. I completely understand not wanting to "bare all" with the co-workers, unless there are some people who would be helpful... Sometimes it's just easier not to involve those folks, although I'm sure many of them are very concerned.

And above all, I hope you start getting some good answers and some relief for your pain and suffering! You deserve good health, and you are NOT whining! All you're doing is stating the way things are. You have a right to all of these feelings.

Please keep us posted, and I hope you can find a way to ask for some help... even just a little.
  #9  
Unread 09-27-2005, 03:14 AM
Embarrassed and ashamed . . . .

Boy can I relate to your conversation. I've been off work since May. They thought I'd be back in 2-3 weeks...it's been 5 months. I'm still having problems. People have said, take vitamins, build up your stamina, when will you be back to work, even something about my pain threshold (well it is what it is...regardless). It's so frustrating! I'm feeling so crummy and not at all like working on my stamina yet. I need to find out what's going on and why I'm in pain first. I was feeling so alone and that nobody understood, somehow didn't believe me (even the Dr's). It so comforting to find others that are feeling like me. I am so thankful for the understanding and support. JMW, we can through a pretty darn good pity party! I feel better too!
  #10  
Unread 09-30-2005, 11:35 PM
Back again . . . . many thanks!

I'm so sorry it's taken me awhile to get back . . . . I just wanted to thank all of you for responding and encouraging me. I realized after reading the many posts that I am not alone, that you each have been through so much, and I appreciate you sharing experiences with me and comforting me. After I posted last week, the BM issues became much worse. I had to swallow barium for a procedure last week and it was like cement in there, even with lots of stool softeners, flaxseed, and water. After 4 days I realized I'd have to do something and ended up taking a bowel prep . . . I really felt like it was the only option, I was so plugged up! I'm not really sure whether it's the rectocele or a new enterocele BUT I'm realizing at some point I will have to deal with this. Mtdewpeg~ thanks for the encouragement and info about surgery. My URO actually used the same pig mesh on my bladder repairs. Only problem is, I am absolutely horrified of them going anywhere near there for surgery again. My bladder has quit working twice now (two weeks/catheter after first baby which was difficult forcep delivery and then a month long catheter after hysterectomy /bladder repairs). I'm just so scared that will happen again . . . . and all the infections. I just can't imagine going there again! All the problems from surgery (almost 8 months ago) are still fresh in my mind. Will I ever get over that? Coffeelover~what a scary story, I'm glad you pulled through and see you are doing well after a recent surgery. That's hopeful for me. Ossa~You are amazing! I've read some of your posts and see all you've been through, yet you seem so strong and postive. You are an inspiration for everyone here! Lonicera~ as always, you are here for me . . . . I could never get through all this without your friendship and support. Meldie ~ Wow, 8 surgeries! I am so sorry. I see you just had surgery yesterday. I'm hoping the recovery goes smoothly for you. Silverfern ~ thanks for the encouragement. I love the off ramp description. Mjd2491 ~ Thanks for your heartfelt support and all the advice. I am truly blessed to have a great husband, in-laws, church family, and a lot of support from my employer so I should be able to get through . . . . it's still hard though. I don't have to ask for help, they are all totally supportive. I guess maybe that's one of the reasons I feel so guilty and embarrassed about having to go through all this again. I feel like it was enough the first time around !
Loolucy ~ I'm so sorry about all the pain you are still experiencing. I hope they find the source of it soon. I agree, it's a comfort to relate to others here and know we are not alone! I really do not know how I could have/would have survived the last 7 + months without everyone here. I'm on the countdown for the next surgery . . . . two weekends left (hmmm, I should be cleaning right now), one week of work left, 10 days total ! I'm ready to get this over with! Thanks again for listening and letting me vent.

jmw
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