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Still hurting more than one year post-hysterectomy Still hurting more than one year post-hysterectomy

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  #11  
Unread 07-25-2004, 06:36 PM
ropes, jagged rocks, and fire

Hey there Hyster sister,
I’m four years post op, TVH, and I’m having so much pain with the ropes-- well, I call it “The jagged rocks.” It is messing up my entire life. I went to the emergency room yesterday 7-24-04, because I thought I was having acute appendicitis. Since this one was a ’new pain’ I was really scared and freaking out. Plus it was in the exact vicinity of my appendix. They did a cat scan, CBC, and UA… all were normal. Ha ha. After four years, I am willing to let someone go in there and explore, because I want this stuff (whatever it is) out of me. I can’t even stand up straight most of the time. Oh, the story is endless, and the doctors probably think I’m nuts by now. Yes indeed I am experiencing what you are. If you have any hints or clues please do let me know, as I truly am becoming hysterical about all of this….
Cat
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  #12  
Unread 07-25-2004, 07:09 PM
Still hurting more than one year post-hysterectomy

hi everyone it will be a year for me on 14th next month. I know what you'll are talking about. If I sit up too long at the computer ar stand too long at the end of the day my swelly belly is as bad or worse than before surgery. I have adhesions on my intestines and probably everything that is left in there. I had a c-section 18 yrs ago, then 7 yrs ago I had cystocele and rectocele repair plus a partial hyst. My gyn said that I had a lot of adhesions and scar tissue. and that my intestines were blocked and twisted by them. I have a lot of cramping pain especially after having intercourse[that is not good-since I just got married 2 months ago.] I also have Interstitial Cystitis and diverticulitis. I am just one big mess in there. I have good days and bad days and I tend to overdo my good ones.
  #13  
Unread 07-26-2004, 08:37 AM
adhesions? Me too

Hey, ladies.

Oh yes, I have the "ropes" as well. They burn and make my belly very tender to the touch when they flare up. And I do have days when they "flare" and days when they're more tolerable. This started for me about 3 weeks post-hysterectomy (Jan '03). I kept feeling this pulling, tugging sensation to the left. About July '03, I couldn't stand it anymore and my gynecologist went back in for what was hoped to be a laparoscopic lysis of adhesions. This is my first caution about more surgery to rid yourself of these beasts - - the "laparoscopic" turned into another incision because they were worse than she anticipated. This only served to make matters worse. Someone said that most surgeries result in adhesion formation, which is true. But, adhesions are really the bodies way of "overhealing" and it's just like a scab. The more you pick at a scab, the worse the scar gets. So, at least for me, I will avoid more surgery at all costs. I am in the process of researching adhesions specialists and there aren't many, I'll tell you. While surgery technique can have some bearing on adhesion formation (don't use enough water to flush out the pelvic, rough handling of the tissues, not making sure "bleeders" have closed off before closing, etc.), you can have the best possible surgical scenario and still develop adhesions just because you're predisposed to do so. Another thing that has helped me is that I go for regular "Rolfing" massage therapy. Rolfing isn't a relaxation massage . . . it's a technique that focuses on connective tissue release. As my Rolfer told me . . . she can't "fix" me but she can address areas that are connected to my adhesions and hopefully loosen the tension which helps greatly. It's definitely aggressive, though, and can be uncomfortable while you're in the middle of it. The after-effects have been worth it for me, though. Like the rest of you, these blasted things seem to make my swelly belly worse when they flare. Sometimes I look like I'm 4 months pregnant and I can't stand for anything to touch my stomach!!! It's maddening. But, I just keep stretching - even though it sometimes is uncomfortable - and walking. Eventually, it feels a little better. My doctor also gave me a non-narcotic pain reliever, which has helped.
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  #14  
Unread 07-26-2004, 08:41 AM
Still hurting more than one year post-hysterectomy

Hi, Anita:

Yeah, the "ropes" are no fun. Thanks for sharing your experice with rolfing. Sounds like you have maintained a positive outlook and I am sure that will serve you well!

  #15  
Unread 07-26-2004, 12:51 PM
Adhesion Saga

Thanks, Michelle.

Yes, it can be difficult and draining to deal with adhesions, particularly, if you're like me and had no pelvic pain prior to the hysterectomy. Grrrrrrr!! But, I do find that staying proactive about alternative measures to help make me comfortable help my mind-set as well. I do remain hopeful that there will come a point when I can have surgery by one of the advanced laparoscopic surgeons that I have sought out. Still, this will require travel to another state and significant insurance hoops (which we know are no fun!!) so for now, it works best for me if I can just keep attacking the little beasts "one stretch at a time", so to speak. It's a long, ardouous process though, and I'm no different than anyone else in our society . . . I'd like instant results and pain-free results would be a bonus!! It really just feels better to know that there are others out there who can describe the same burning, tight, ropey, "bunchy" pain. Sometimes, I feel like I'm bending over a pipe! At least I know there are others out there who are going through the same issues! That's why I do love this sight!
  #16  
Unread 07-26-2004, 02:52 PM
adhesions!!!

Regarding these adhesions, after hyst, never before, it seems that most of us had surgery because of endo!!! Anyone alse notice that? I'm wodering if it is connected somehow to already being "stuck"???? Just a thought, as I also try to figure out my next move!!! Everyone kept saying it could take up to a year, so that was what I was waiting for, not I think I'll wait longer!!!
Good Luck to us all.
  #17  
Unread 07-26-2004, 04:53 PM
Still hurting more than one year post-hysterectomy

Whatsnormal,

I don't think it has anything to do with the endo. per say. I have had cronic problems with adhesions since my last c-section 17 years ago. My doctor did a laparoscopy to rule out endo 16 years ago and found me to be loaded with adhesions, he removed them and I was fine for a long time exect that I was having bladder problems. Then 12 years ago they found the cause of my bladder problems and went in to repair a uterine/bladder fistula and guess what, the adhesions returned again in full force quickly I might add. When I went to an infertility doctor she did another lap. and found them, cleaned me out again (this was the 4th one I had), and found me to be loaded with endo. Ten years and 2 more kids later, when I had the hyst. my regular gyn. found more adhesions when he did the hyst. He cleaned me out again and warned me they would probably return even though he did a "great job" with the hyst. So 9 mos. later and I am still suffering, now I am seeking a second opinion; my doc. told me he only allows 20 minutes per patient and will no longer return calls. Once my time is up it is up, even though some of that time is me sitting waiting for him. All I am really trying to say is no matter what kind of surgery you have you are bound to get adhesions. Go for the lap with another doc. and let him/her clean them out, you will be much better off.

Hugs,
Toni
  #18  
Unread 07-26-2004, 08:58 PM
I am releived I am not alone

When I started having pain about 3 weeks ago I went to the after hours clinic and was thought what was first to be a n infection in the hairs "down there" After a round of keflex and no result I went back and was referred to a surgeon- MD was thinking an inguinal hernia. I went and no it is not that. The surgeon said that with as much surgery I had done some scar tissue and adhesions were to be expected and it would help if I lost some of the weight I have gained over the past year. My pain is in the left lower groin area from the incision area down. I can only describe it (please don't be appauled) like taking all my hairs there and yanking them as hard as possible. I don't see a point in waiting in the gyn office for hours to be worked in (her next available is october). The surgeon said that if pain gets unbearable I can have them removed but as the other ladies have said other surgery can lead to more adhesions. I take motrin, tylenol or darvocet if it gets bad.

June17, 2003: TAH, BSO, Bladder suspension
  #19  
Unread 07-27-2004, 02:00 PM
One more question on adhesions

Just trying to figure out where I am in the Bell Curve, so to speak, so I hope you can appease me with a few questions:

So, do you ladies with the adhesions find that there are days that are worse than others?

Do you find that you have pain in areas other than the actual incision?

Do you feel tightness?

Does your back also hurt?

Are you able to "feel" the adhesions upon touch - - like if you press on your abdomen?

Thanks - - it really does feel better to know you're not alone.
  #20  
Unread 07-27-2004, 02:18 PM
Still hurting more than one year post-hysterectomy

Anita,

Yes my pain is worse on some days and less on others. Yes on pain in other areas. No tightness just tenderness on some days which my doc informed me is due to hormones and our cycle, even without the uterus. Yes to a backache, right in the middle of my back, like when I was pregnant. No I do not feel the adhesions. Adhesions are usually deep inside and attach to organs or the area where the actual incision was made. You will feel the actual external scar though. I hope this helps some.

Hugs,
Toni
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