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Hysterectomy/endometriosis/bowel Problems (Page 1)

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Hi,im very confused.I had a hysterectomy 10 years ago due to alot of gynae problems including endometriosis.I am now suffering with severe bowel trouble which was suspected to be caused by crohns disease.After a number of horrid tests(!),they found a few small ulcers but nothing major.They have suggested it is either ibs or maybe something to do with endometriosis.I am confused because I thought that would be cured by the hysterectomy.I am on hrt,should I come off it?Or should I just stay in bed with my head under the duvet and hide from everyone???!!!!I have a great deal of adhesions due to 8 major operstions in the last 12 years,could this be a cause?If anyone could give me some advise I would be grateful,otherwise................Duvet,he re I come!
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First Helper gonnawin
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Users who thank nikkiSt for this post: dladydi 

replied March 9th, 2004
Hi nikki- I am confussed too after reading this. I have endometriosis, which some have told me to have a hystorectomy ( im 23 so that is not an option). But even if you are on hrt- I dont htink that it shouldnt make endo grow after your hystorectomy, I thought too that it was supposed to cure it. Is it possible that endo cells can keep growing in your body even after your operation, if they are already there and not detected?Sorry that I cant be of any real help to you
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replied March 28th, 2011
Post hysterectomy endometriosis
I had a hysterectomy when I was 29, but I had recurring ovarian cysts and tumors in addition to the endometriosis. Nonetheless, just a couple years after the hysterectomy I thought I was losing my mind. Finally, my general practitioner had a CAT scan and then a sonogram because the CAT said I had an ovary. My gyn dismissed it to poor radiology. My GP pushed, and finally GYN went to look--it was a mass with endometriosis and ovarian tissue regrown. Went through Lupron and Femara treatments (horrible!!!). Now a recent CAT scan shows a small uterus, and my GI doctor says he thinks endometriosis is on the outside of my bowel. My GYN is again dismissing it--I know what you mean by hiding under the duvet!!! Help is not available even after you've disproved the theories before. My daughter is 14, and for 3 years the doctors sent her to a psychiatrist because they said her pain was "in her head"--it wasn't--finally a doctor did the surgery and it was endometriosis. You really have to fight!!!
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replied June 3rd, 2011
endometriosis will continue to grow and have flair ups as long as you have ovaries producing estrogen. Endo feeds off of estrogen. I'm 29 and had a hystorechtomy at the age of 27 after giving birth to my son. 3 surgeries later they found endomteriosis removed what they could and it still bothers me 2 years later. I still bleed slightly each month even though I have no uteris or cervix...talk about confusing. My doctors explained that the only reason to get it to stop...is shutting of my ovaries..which is very expensive and I'm not a huge fan of going into early menopause.
WIth all this being said my mother and sister discovered a Dr. Eckhard who has been known to cure endometriosis by eliminating estrogen products from your diet and dialy use. THis means no scented lotions, shampoos, laundry soap and all organic food. THe products we use have a TON of estorgen producing products in them which is very bad.
He also suggests using bio-identical progesterone oils and that if I stuck to this to a T he could cure me within 8-9 months.
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replied August 5th, 2011
GBK
Hi--yes being on hrt can cause the endo to grow--hormones can feed the disease! I learned this the hard way having had a hysterectomy with both ovaries being removed. I was young so was put on hrt and now 5 yrs later i have the exact same pain. My doc has now taken me off hrt and i hope with the removal of hormones it can no longer grow and I can return back to my pain free life.
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replied August 21st, 2011
Endometriosis, Hysterectomy, and Bowel
I had a hysterectomy Jan 2010. What was suppose to be a 1-1.5 hr sugery (vag hyst) ended up being a 7.5 hr surgery that involved reopening near my csection scar, half my colon being removed, blood transfusions, haveing an illeostomy for 3 months and then having a reversal surgery for the illeostomy. Not to mention the constant trouble w bowle probs ever since.
So...endomtreosis can DEF affect everything. Turns out the endo had fused my colon to my uterus and rectum. I was 32 yrs old.
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replied March 22nd, 2004
Extremely eHealthy
You can still grow more endo tissue even after a hysterectomy. It is less likely, but still does happen. Ibs is a pain in the ass (no pun intended). There are pills for it that do help a lot, but ultimately you just have to figure out which foods your body reacts well to and which ones you should not eat. It is different for everyone.
I also have endo and just turned 25. However, I choose to live with the pain and not have surgery. The only time that I will have surgery is when I decide that I want to have children. Then I will have the tissue cut out. They will only cut the tissue out so many times before they really pressure you into a hysterectomy. And that is just not an option for me!! Your doctor should have explained that the hysterectomy wasn't going to cure anything!!! It is possible, but not even likely.
Do not hide from the world! This has to suck big time for you. I am so sorry that you are still having problems. I would suggest getting a different doctor and taking suggestions from him/her. Good luck girls!
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replied July 11th, 2004
I had a hysterrectomy a few years ago due to heavy bleeding they left in my ovaries ....Then a year ago I staarted getting really bad pain in my left side went to the doctors and found out I had endo really bad eneded up losing my left tube and ovary since that I have terrible pain on the right side and bowel problems so to me yes it can cause the problems you are saying you have .....
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replied July 11th, 2007
Endometriosis
I got my hysterectomy when I was 27 because I had endometriosis everywere. In my bladder, on my bowels, etc. I had everything removed. I am now 40 and have back pain that won't go away, bowel issues and a discolored discharge. Doctors won't believe it could be endo. Any suggestions?
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replied July 19th, 2011
Pain following removal of uterus for endomestriosis
Please discuss with your gynocologist the possibility of adhesions - these occur after most abdominal surgery and are known to cause severe bowel problems and pain in many women following hysterectomys
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replied July 26th, 2009
Yes endo is NOT always cured by having a hysterectomy, I know cause I had one @ 32 but still have severe pain in right side (kept one ovary) and horrible problems with my bowels where doctors found adhesions & endo during several previous operations, so yes endo does & will come back if not treated durig the hysterectomy,all lesions have to be addressed or any little bit of estrogen will cause the eno to stay put & adhesions are hard. Good luck to all*
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replied July 26th, 2009
Endometriosis after hysterectomy with bowel problems?
Anybody else still have signs of Endo after a hysterectomy?? I am still mad about losing my female organs(sans one ovary) and having terrible pelvic and bowel related pain, anybody else out there in same boat?? Mad
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replied August 10th, 2009
i was lied to as well my doctor told me just take out 1 ovary and uterus and that it would go away well my marriage is in trouble now,i developed prolapse and severe back pain wont stop hurting went back in with severe left side pain and had to have other ovary removed because of a mass the size of large baseball on ovary it was endo.im so over men doctors who say the uterus is only for birthing a child taking it out is a death sentence slowly but surly.
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replied April 9th, 2011
could you please expand on "having your uterus out, is a death sentence slowly" mean. I am 26, horrible endo, it's everywhere, so many surgeries, and one last on on may 12, 2011 a full-hysterectomy, overies, fallopian tubes, uterus and cervix. I could really use your advice. ash1207
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replied August 10th, 2009
I couldn't agree more, men doc's don't have a clue as some lady doc's don't either, unless you have Endometriosis and suffered the pain & humiliation over the years with this God awful disease in my book you don't have a clue, a Hysterectomy is not always the answer, especially for younger woman who want babies someday....big mistake. my Hyst was at age 32 & I still regret it almost 17 years later*
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User Profile
replied November 5th, 2009
Life with endo after hysterectomy...
Hi Ladies. First let me just say how very sorry I am that all of you have had to endure so much pain and heartache over the years. i wish I had an answer but alas I am in the same boat. I too have endo and had to have a hysterectomy at age 33 due to being riddled with endo and having what the doctor thought was a malignant tumor in one of my ovaries. Thank god it wasn't cancer but I did have to have all of my female reproductive organs removed. It is still traumatic to this day! I still have mystery pain in one side. Urinating is still painful at times. And my digestive system is incredibly sensitive. I did decide to give up red meat and gluten and it has helped a little bit but I still have back and hip pain, migraines, bowel problems, and exhaustion. It id difficult because doctors just want to put you in hrt and call it a day and I know that is not the answer. Hello? Why take estrogen if endo lives on estrogen? I wish I had the answer to help all of you and myself. All I can offer is this: be your own patient advocate when visiting the doctor and do not take them at face value. Do your own research and keep looking for the doctor that is right for you. And never give up hope. All of my best to all of your very brave ladies!
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replied November 5th, 2009
Luna, I still have pain in hip area, back and abdominal 17 years after my Hysterectomy, I don't believe there is a cure for Endo & your pain is not mystery pain, it is very real as the damamge that Endo does on our internal organs is horrendous & residual forever in my opinion, like you I am exhausted most of the time too so it can't be all in our heards being we all seem to have such similiar syptoms even after the Hysts.??? Hang in there I to wish I had some words of wisdom for all the poor ladies who have inherited this God awful disease...God Bless*
JoJo
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replied January 13th, 2010
i had severe endo , had a total hysterectomy last march 09, after recovery feelt great, for the last couple of months all the same pains are back, feel as though im back to where i started, going in for another laporoscopy in 2 wks, god knows what they are going to find. any replies as to what might be going on would be a god send
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Users who thank jackielilo for this post: dladydi 

replied March 16th, 2012
Full hysterctomy
I was just told i have to have a full hysterctomy and i am in alot of pain.But am afraid of getting the hysterectomy.I had a laporoscopy done and my doctor actully gave me the cd and i had scar tissue everywere and very large cysts on both overies.I have had cysts removed be for.3 laporscopy and about 5 d&c.I was told endo and fibroid in my uterine.
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replied March 16th, 2012
Full hysterctomy
I was just told i have to have a full hysterctomy and i am in alot of pain.But am afraid of getting the hysterectomy.I had a laporoscopy done and my doctor actully gave me the cd and i had scar tissue everywere and very large cysts on both overies.I have had cysts removed be for.3 laporscopy and about 5 d&c.I was told endo and fibroid in my uterine.
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replied January 13th, 2010
Good Luck Jackie...please let us know what happens after the Lap surgery, Endo is relentless but never give up, there has to be a good doctor out there somehwere other than Dr. Cook & Dr. Redwine??
Hugs,
JoJo
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replied January 15th, 2010
Silent Suffering
I feel for you girls because I am truly suffering too. I am so depressed today. It was humiliating being stranded at the garage and asking someone to fetch my car that was parked just a five minute walk away. I walked for about an hour before (because of having my car looked at) and I just could not take any more of the pain...it worsens to the point of it shooting up my spine and buttocks. I'm so down. I am 36, been disabled for 2 years from this and still people don't properly believe me. Feel so vulnerable and afraid this will never go.
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replied January 15th, 2010
I have endo too severely on my bowel have just had colonoscopy and gastroscopy to make sure i wasnt missing anything else. My pain is really bad in my bum under my lower back and i find it very difficult to sit which is hard for work and other things like driving etc. I spoke with gynae recently and was advised oophorectomy (ovaries removed) not hysterectomy but that i would probably need considerable amount of bowel surgery first so they can remove the lesion etc before the ovaries are removed. i have been off work for a number of weeks now as the pain is so bad when sitting i feel like i am at the end of my tether and it scares the hell out of me after reading these posts to think that i could still have this pain after the ovaries are removed i am 27 and have been suffering severe pain and haemorrhage for past 10 years
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replied January 17th, 2010
inpainallthetime....DO NOT HAVE YOUR OVARIES REMOVED!!!!
you are to young and that is NOT the answer!!!
Good luck to you!
JoJo
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replied February 19th, 2010
I'm 31 and a had complete hysterectomy with removal of ovaries and appendix-Dr. said there was a mass and intestines were stuck together and my uterus was stuck to my bladder. It's been 9 months and the pain has returned. When pathology came back from surgery is when he told me it was endometriosis and not cancer. So I assumed that was a good thing and not to worry about the endo. If everthing was stuck together does that mean the endometriosis had spread to my bladder and intestines? He said he "cleaned" them really well, can it still return. Also am taking estrogen but hot flashes are not controlled. I feel horrible.
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replied November 3rd, 2011
hys. & hot flashes/take black cohosh root by now
I know you wrote this in Feb. 2010 and I was wondering how your hot flashes are. Wow, I can relate. After my hysterctomy (full) at age 49 two yr. ago I was a mess. I would be on an interview and be asked if i was ok??? because of my figitiyness and sweet under my arm on desk. Needless to say after that I just continued on with my unemployment until I was feeling better. I hated the patch and started taking Black Cohosh (root) by NOW (manufacture). I now longer get figity and yea to very little hot flashes. I know the black cohosh work because one time it was not in my budget and went 3 days without and the i was once again dripping wet. yes it does take at least a month to work. so by 2 months worth and don't give up. Only by this from NOW or make sure its from the ROOT/at least 80 mg. one in morning and 1 at night. Oh, and take a good BComplex and b12. Good luck!
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replied September 30th, 2012
I'm 57, had a hysterectomy at age 28 and only one ovary was removed. I was in pretty much the same shape you were in. I still have constant pain in my left side due to adhesions. My doctor (female) says I can't possibly have endometriosis at my age. I also took estrogen, then I found out endometriosis thrives on it. All I can tell you is that it's sad to say, but you're probably going to have to learn to live with it. I feel sure the stuff will probably haunt me the rest of my life, but I'm tired of doctors. No one will consider surgery on me because of all of the adhesions I have. More surgery just means more adhesions. I've found that just trying to eat healthy, stay a healthy weight, and doing whatever exercise my body will allow me to do has worked better than anything.

Best of luck. Just remember you aren't alone!
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replied February 24th, 2010
I like most of u have endo,i had my hysterectomy almost a year ago with removal of my last ovary,i am very fortunate to have had three wonderful kids,but it has returned with all the pain and iam at my witts end.Iwas put on hrt as im only 36 and was told to stay on that for about 14 years which is defo not helping the endo,further surgery is now required and i am devastated,i have a wonderful surgeon but even she is'nt god....so all u women out there hang in one day there will be a cure.......
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replied April 24th, 2010
I am 52 and had a "clean sweep" when I was 41, because of endometriosis. I too suffered severe bladder pain and pelvic floor pain. The hysterectomy helped with pain for awhile. I still have bladder pain, diarrhea attacks that have multiple times been accidents, lower back pain, and fatigue. I cannot sit for more than an hour without getting horrendous pain in my right lower abdomen down into my right leg. When I go to the doctor, I sense that he thinks I need a psychiatrist. I think that I have Endometriosis in my abdomen and that my bladder and intestines are somehow entwined. How can I get the doctor to listen? Thank God I am a teacher and don''t sit much, but the abdominal issues are becoming more frequent and I am tired of feeling like crap!
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replied April 25th, 2010
notinmyhead - at 36 I dragged my husband into my doctors office and demanded a hysterectomy. I had been diagnosised w/endo 2 yrs earlier via lapro. Had 1 good year - then went to hell in handbasket. Funny - with my hubby there, doc had no problem agreeing with me! My emotions are sometimes my worst enemy when dealing w/Drs. 11 years since my hysterectomy (at 36), and in the past 3 yrs I have been diagnosised w/Meniere's disease and fibromyalgia. First 8 1/2 yrs were bliss, I had stage 4, and found relief. Was on HRT for the first six months or so, then came the big scare, so my doctor took me off that and put me on the ESTRING. Except for having to go into the Dr.'s office every three months to have it changed, it was great, and I thought 'the girls' were safer. Then last summer I ended up in the ER w/pain in my lower right abdomen - thought it was my appendix, but almost fell off the gurney when the attending Dr. said appendix was fine, it could be a recurrence of the endo. Had Estring removed immediately, even though my Dr. says recurrance would be extremely rare, and will not use anything else with estrogen, even though I know it may cause other issues. I've always been active, but can barely find the energy to get out of bed some days. I made the right choice, though it's not for everyone. Just wish I had known more back then. What I have learned in the meantime is you have to be your own advocate, and trust your instincts - kinda don't take NO for an answer, and let your dr. know it, yeah - you are probably somewhat depressed - hell - he/she'd be too if they were living with what you are living with, pain will do that to us!The pain is running you down, not the other way around. It is NOT in our heads - it's everywhere else!
Best of Luck!
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