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Complete Hysterectomy Due to Endometriosis (Page 2)

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April 16th, 2008
Total Hysterectomy Dec 06 - 1 year 4 months ago
I'm just checking in...I had a total hysterectomy (ovaries, tubes, cervix and Uterus) due to Endometriosis. I have never felt as great as I have over the last year. It took me at least 4 weeks to heal. I had a LAVH (laprascopic assisted vaginal hysterectomy) and took 6 weeks off of work. Fast forward, I am starting to have more pain. To my complete let down, it feels exactly the same as it used to when I had Endo. I have been reading all day and have discovered that I did not cure the Endo with the surgery. I have made an appointment with the GYN/ONC that did my surgery. My mother was diagnosed with stage 2c Ovarian Canver and Stage 2a Uterine Cancer. I am a little freaked out. I just wanted everyone to know that I feel like a million bucks compared to before surgery. BUT, I am now starting to feel some of my old pain.
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replied May 18th, 2008
I just found out that it all has to go
I am a 24 y woman who in the last year has had three lap surgeries due to how bad the endomitriosis that is just eating me alive. It all started when I started having the most unbareable pain that I have ever had(and I have had a child all natural) I did not agree with the results from my regular doctor. So I went to my sisters gyno and he did an ultrasound on my abdomen and found out that my left ovary was triple its size It was a week later and I was having er surgery to remove the infection that had built up in my ovary. That was Ferbuary of 2007 then in july I had to go in and have the left tube ovary and my appendix remove because they were all stuck to my uterus. They also found out that my rectum was also stuck to the back of my uterus which my doc told me would make for a very messy hysterectomy. Now march of 2008 I had to go and have a cyst removed out of my right ovary that was the size of my uterus and now in may I have to go and schedule my hysterectomy I am scared and very disappointed but I can not have this disease eat me alive any longer
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replied May 28th, 2008
endo and hysterectomey
i underwent 8 laps in one year for endo... each time the ovary was stuck to the pelvic wall. I also took three rounds of lupron all to no help. I got really sick three years ago after i lost my job and insurance and dropped down to 92 pounds due to the pain and nausea. I was in surgery for 5 and half hours... but i would do it all again. i have no kids but, now i have quality of life. it was hard to get healthy again and i still have some pain but, not like the pain that got me here. the hysterectomy itself took 45 minutes and the other time was spent fixing everything else
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replied August 11th, 2008
endo after hysterectomy
hi everyone, I also have had a hysterectomy in 2001. I have had several surgeries since then to remove cysts and adhesions. Over the last several months the pain has returned but I have had severe diaherrea everytime I eat anything. I can barely make it to the restroom. There are times the only thing I can keep down is gatorade. I have had accidents and even go in my sleep. I do have the lower back pain and pain in my right side. I am a hard working person but since I have been so sick it has been hard to get to work. I just started a new job a little over a month ago. I have been to the emergency room and to the doctor trying to get this resolved but my new employer fired me today. I have never been fired. So I have to get this fixed before my insurance runs out. Enough rambling. I just wanted to see if any other suffers have this problem or If I have something else going on... depressed and aggravated
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replied February 11th, 2009
Considering a Hysterectomy
I am 23 years old and have just been diagnosed with endometriosis...My Dr is recommending the Lupron Depot shot and I am very afraid of the side effects...and I have also heard that lupron doesn't provide relief for long. So i just want have the hysterectomy and be done with the endo...I have two beautiful children and emotional health issues that i want to focus on. My aunt had a hysterectomy in her 20s and got alot of relief from it. My other concern is the hysterectomy putting me into early menopause and ERT...breast cancer runs in my family and I guess there is a problem there....I am just trying to prevent myself from years of failed "treatments," pain, and misery. I am already a mother, I want to be a physically and emotionally healthy mother! But, after reading all of your posts I am even more confused about what to do! HELP
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replied March 15th, 2009
Endo & Gallbladder
Has anyone ever had symptoms similar to gallbladder attacks or have been told the endo was implanted on their gallbladder? I ended up in the ED last week because of pain, was examined by gyno who was certain it was from Endo so have been scheduled for laparoscopy and hysteroscopy in April. BUT 3 weeks ago I started getting the painful bloating, few days later cramping, few days later bad pain in the ribs, right and left side, and since Friday I've been in bed with extreme nausea, dizziness, and rib pain. I took T3's which took the edge off the rib pain but I am so tired!. I'm good to get up for about an hour before I have to go back to bed again. I asked the gyno about the endo attaching to the gallbladder and he doesn't think so - he thinks it's completely separate issue but thinks it's attached to my bladder??. I've always been a very fit, active and healthy eater for many many years and can't figure out why all of a sudden I'm being diagnosed for Endo and it has nothing to do with my gallbladder. I've got a HIDA scan scheduled for next week so maybe it's not going to be gallbladder but sure does sound like it to me. I'm so confused and feel like absolute crap. I'm 39 and have 2 kids 5 and 4yrs old, thankfully a wonderful husband but I have no energy to give them. Any explanations or similar experiences would be great.
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replied July 20th, 2009
Complete Hysto
I had a complete Hysto a year and a half ago, I was 37 at the time. I had severe Endo and was in alot of pain. I also had several laps to remove it but it only came back. I wish I had NEVER had the surgery, I am not the same person today, gained 42 lbs, no energy, depressed, no desire for sex, skin is dry, hair is dry, Hot Flashes are terrible its just made me miserable. If you are considering a complete Hysto, Please talk to your doctor and discuss other options first. This is not a cure all surgery, I have found that the side effects from the Hysto is worse than the Endo ever was.
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replied August 29th, 2009
I am 49 years old and have been in pain with bowel movements and urination. I have state 3 endo. I am considering a total hysterectomy with removal of my ovaries and no estrogen. Are there any success stories with this.
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replied November 18th, 2010
I am 51 and I am about to go for a full hysterectomy due to a large ovarian cyst and endometriosis. No one ever told be about stages of endo, and no one ever suggested care for it. I go on Dec 2 for the surgery and I am very afraid. Most of the posts I have read are women who are or were much younger than I getting this done. I really need some kind of support or validation that I will be pull through like you all did. I am truly afraid of surgeries and all that goes with it. I am hoping to find the strenght and courage I need to get trhough this....Thanks
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replied December 28th, 2010
Total Hysterectomy...DON'T DO IT!!
I don't know if anybody is still reading this thread but if you are and are even considering a total hysterectomy for Endometriosis, DON'T DO IT!! It totally destroyed my life and the after effects almost killed me.

I'll tell my story if I find out if anyone is still reading this. Please respond if you are.
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Users who thank catlovr2 for this post: amplace 

replied January 12th, 2011
Yes, catlovr2. I came across this thread today and interested in hearing your story. I am 34 with two kids and was diagnosed with stage 4 endo and several forms of ovarian cysts and my doctor suggested i have a total hysterectomy. I have had severe pain for the past few years and finally after having every type of scan available on the market, my doc finally decided to do a diagnostic laporascopy on the 30th. The pictures were horrible and nothing looked the way it should. I also have adhesions in addition to the endo and cysts. I just want everything out so i can be pain free, but if you have reasons why I shouldnt go through with the surgery, please let me know. Thanks.
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replied October 9th, 2011
Surgically induced menopause
This thread hasn't been active for some time but I'll leave a bit about my story in case anyone comes across it. I had a complete abdominal hysterectomy due to stage 4 endometriosis, 8 years ago - I went through surgically induced menopause at 30 years old. It was a difficult choice to make because I had no children but through the diagnostics, found out that conception wasn't a possibility anyway. I've done HRT for several years now...went a few years without any additional hormones, tried natural supplements, etc. What I want to share though is, if you have surgery, it may help the physical issues but be prepared to have to deal with the emotional components. This was something I didn't know about and there was nothing online at the time I was researching my choices. It would be very advantageous to have a strong support system and even a counselor to explore the feelings that may crop up post surgery. These are some of the issues I've dealt with...every day I look at a scar that reminds me I am not whole, as a woman. Will a man still want me if he finds out I can't have children? How will the relationship change with my husband, spouse, partner? You will deal with issues that friends your age don't know about yet...you'll be better able to relate to their mother's than them about your body. Are you prepared to fast forward your body 15 years, it ages much faster. How do you prepare for the reactions of others when they find out - reactions from other women - the pity they express. Finally, even though they took out the physical parts, they don't take your biological clock, it will tick away and one day, much to my surprise, it surfaced and forced me to look really hard at life and re-assess how to live it to the fullest. There is a chance you lead a very different life than many of your friends and your thinking changes because of. For example, at 38, when some of my girlfriends are just starting young families and will deal with daycare, schools, college funds, etc. I am looking to a retirement lifestyle. There are also some issues of envy that you may face...you towards your girlfriends and what they have (the family) and they towards you because they see all the things you have (material things.) Every woman's situation is different and you have to do what is best for you. I just wanted to share what I've encountered. I don't regret the decision I made but sure wish there had been someone there to share about how things were going to change.
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replied November 7th, 2011
Frightened!
38 years old, Stage 4-5 Endo - kissing ovaries and told by my surgeon "it's a freakin mess in there". Am worried about fast-forwarding myself into menapause. I don't feel I have a choice - if I leave it there, it could turn cancerous. I am really stressed. I have this vision of having a full hysto, spending 4-6 weeks recovering, getting HRT and feeling fabulous for the first time in a few years. I don't want to ruin my life. I am really concerned. It's not natural to take all these bits out of our bodies. I feel damned if I do, damned if I don't.
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replied March 13th, 2012
Hi ladies, I'm 35 yrs old and was diagnosed with endometriosis when I was 17 and my gyno said it was one of the worst cases he's seen. But the funny thing was I hardly had any period pains. But since that op I have had 5 laparoscopies one last yr and one the yr before and going for another scan tomorrow and I'm restricted from any exercise and my period pains are terrible. Goes all around the lower part of my back, to my thighs, calves and my arms are now aching. I get so tired and it just takes it out of me. But I'm just sick of it!!! I have no children and I don't want any which makes me feel terrible for those who cannot have any, which I don't even know if I can or can't cause I havn't tried. But I have been thinking about getting the hysto. It I have read that there's cases where the endo can come back!! So what's the point. I just don't know what to do. But my husband is right behind me and gets frustrated when he can't help me when I'm in discomfort which is every day. Two panadol every day can't. E good for you.
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replied March 13th, 2012
Hi ladies, I'm 35 yrs old and was diagnosed with endometriosis when I was 17 and my gyno said it was one of the worst cases he's seen. But the funny thing was I hardly had any period pains. But since that op I have had 5 laparoscopies one last yr and one the yr before and going for another scan tomorrow and I'm restricted from any exercise and my period pains are terrible. Goes all around the lower part of my back, to my thighs, calves and my arms are now aching. I get so tired and it just takes it out of me. But I'm just sick of it!!! I have no children and I don't want any which makes me feel terrible for those who cannot have any, which I don't even know if I can or can't cause I havn't tried. But I have been thinking about getting the hysto. It I have read that there's cases where the endo can come back!! So what's the point. I just don't know what to do. But my husband is right behind me and gets frustrated when he can't help me when I'm in discomfort which is every day. Two panadol every day can't. E good for you.
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replied April 26th, 2012
heysterectomy
Hi I am almost 30 years old have had endo for about 10 years and had 4 surgeries. The last one was less than a year ago. Does anyone have any info on having a total hysterectomy and all endo removed. would it still grow back even if you did not get your period? If microscopic cells were left wouldn't they be able to clean them out? I am currently on an antidepressant and have been for 8 years. I worry that I will totally lose my mind... go crazy. I have this vision of getting a hysterectomy and being rid of this pain. My poriods are a night mare, if I had a hysterectomy I wouldn't have to deal with them and even that would be almost worth it. Also I am going into early menopause from all my issues, would that be a plus since I am so young?
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replied April 26th, 2012
Community Volunteer
Hi denvermom and welcome to ehealth: Tough question...First, Endro could possibly grow back...It can attach to any organ...Bowels, bladder and ovaries...Uterus is a big problem...I know, I had it too...Whether it will show its face again can be is just a guessing game...If they get it all you should be OK...

As far as getting a Hysterectomy at this age, this is the call of you and your doctor...I, too, know the stress of period where you darn near bleed to death...I kind of doubt you are in early Menopause, but it is possible...The stress of living in this nightmare can be a real killer...I know...I lived there...

I had a total Hysterectomy at age 47...Took everything out...I never looked back...Believe me I have no regrets...

Again, talk this over with your OB-GYN...Get his/her opinion and go from there...Take care...

Caroline
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replied April 26th, 2012
I have stage 4 endo and it is pretty much everywhere. I had four laps done tried BC but cannot tolerate synthetic hormones. I get night sweats and heat flashes which makes me think perhaps I am beginning menopause. My doctor did say I will most likely begin meno. early. Has anyone tried Endovan? It is a natural pill I found online. It says doctors do not prescribe it beings it is something natural and not FDA approved, which I understand but if it is the miracle pill they claim it to be, why don't people know about it?
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replied November 15th, 2012
I appreciate everyone's honest comments. I am 31 and have had severe cramping and pain with my periods since I was a teenageer. I learned to deal with it, along with strong doses of Toradol (which in turn are causing damage to the lining of my stomach). It was during my gallbladder removal this spring that the surgeon discovered endometriosis, in my abdomen wall and on my liver. I had diagnostic surgery with my obgyn this fall, and the result was severe endo, the major concerns are my liver, bowel, and bladder. It is her belief, and mine, that if left untreated these organs can and will fail. Because of the depth of the adhesions on these organs, the endo can not safely be removed surgically. I do not want to take any drugs (lurpon, progesterone, etc) because of side effects, children are not a possibility, so I am considering a full hysterectomy. My only pain is related to the periods, so I'm hopeful that if the periods are gone, the pain will be gone. But most importantly, I do not want to give the endo a chance to grow and get worse. I do worry about early menopause, but I feel like losing function of those organs would be much worse. I am lucky in that I have a supportive husband, family, friends, and coworkers.
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