any 40 y/olds with endo have hysterectomy

i have had 1 laparatomy and 6 laparoscopies for endo. having horrible period every 21 days. been to 3 different docs and getting 2 different answers.one says i won't have periods, the others say i will.  been reading about hyst (confused still again) and wondering if anyone with severe endo has had partial hyst (leaving one or both ovaries intact) and remove cervix and uterus. are you still having a regular period every month or not? i am seeing another specialist for try to get some answers. we are all so different 9OUR BODIES0 but i am just tired of bleeding every 21 days and DO NOT want and cannot tolerate hormones.....................

[codie157]

hi im going in tommorrow for lap, to look for endo and adeshions i am scared to death cause iv never had anything done before and dont no what to expect please could you tell me how its done and how you feel afterwards. i would really appreciate any replies thanks

[1sweetpea]

I hope that all went well with your surgery. I had a lap done march 26th and the doc found that I have stage 4 endometreosis which has caused my intestines to attach to ovary as well as other things any who I will be having a hysterectomy on the 20th leaving only one ovary as I am hoping to not need replacement hormones. Let me know how you're doing. I hope that your surgery went smooth and that you are feeling better by now...
Best Wishes

[protea]

I wanted to share my story.I was diagnosed with severe endo in 2003.Had 1 lap in 2004 and 2 in 2005.then was told to have children as that will cure endo for a while.So we had 2 boys on in 2006 and 2007.Not really planned that way but happened.My endo was still there so then had hyst in 2008.My bleeding and pain was so bad that I could not handle it.I was ovulating one week and then bleeding the next.That went on until I had my LAVH in 2008.Since then I am still in pain.It tired a course of progestin which never helped either.It has become a quality of life issue for me now.I have now looked into an endo specialist in WI and he is willing to help me.MY gynae told me there was no such thing as an endo specialist.But there is!!!!!!!!
He is going to hopefully save my ovary and excise all the endo out.They think that it has gorwn under my diaphram and gall bladder and colon and bowel too.I am really hoping that he can help me as he is my last chance.I really hope you all find some relief from this horrible disease.

[skeetelmore65]

Hello,
     I had edo real bad as well and am suffering now so bad and never thought @ the endo after I had hysterectomy in Dec.'99. I never dreamed that I could have endo all in my body. I really think that is what is wrong w/me. I hurt in every part of my body. I am so weak and my muscles are doing strange things.Tell me @ ur symptoms if u would. I have these rings forming around my legs. Like indentions where the muscle was and now they're gone. Do u have things like that happening to u? I am still wondering if it couldn't be something on top of the endo w/me since it is all over my body...the pain that is. I hurt in my arms/legs and neck/back. I do know that my endo was attached to my colon when I had it romoved. The doc used a microscopic approach. She didn't open me up and I think that she should've now. I am going to see my gyno ASAP, but is that who I need to see or as u said a Endo specialist...how did u find one 'cause I am going to look as well. I am in Arkansas and know I will have to travel, but will .
     I hope the best 4 u and please send me a post back w/ur symptoms to see if they are like mine. Please...U take care and always...GOD BLESS... Karen

[protea]

HI there yes I do hurt all over but then in august of last year I was diagnosed with fibromyalgia and hypothyroidism.Maybe you should see a rhumetologist as well.Just to be safe.I would definitely see an endo specialist.Try this website www.hystersisters.com and there you can type in the search endo specialist.One of the ladies there will give you a list of all the specialists otherwise you can type endo specialist in AR in your google search and see what you come up with.I was fortunate enough that mine is on my insurance too.I dont have the rings on my muslces though.I will keep you posted.I really hope you find some relief.all the best.

[skeetelmore65]

Hello,
     I am going to check a Rhumi out and Endo specialist. I sure appreciate the info. I am so tired. How ru doing? Fine I hope. IT gets hard sometimes. I have good moments and it is strange. I just want to be dx with the right thing and not just take meds for something I don't have.
      I just mean that Endo is such an unbias disease that it could be what is wrong. You know? It is worth a shot to check and get properly dx. I just feel sometimes they just don't know what u have and stick a label on u. I am sorry but it is true. I don't mean any offense to those good docs out there that r really trying. I sure would like to find one for myself. I have been suffering 4 over 4 yrs and it gets sooo old...PAIN. I know it is so hard on the people that I love too. I am so blessed to have my mom and dad to help me, but they are getting older and just want to see their only daughter back on her feet. I understand how frustrating it is on them too.
     I am so glad u got have children b4. I feel 4 those who couldn't. I am so sorry to hear when someone can't have them. It must be awfully hard.
     Tell me how they excise all the endo out? Mine was attached to my colon and the Gyno that did my surgery(hysterectomy)...took out all but cervix. I wonder if it was attached to my colon how she got it all. I am worried @ that. My hips hurt all the time and afraid that it is in there somehow.
     Hey, u take care and always...GOD BLESS...Karen

[protea]

I do feel your pain.I was doubled over in pain this past week and in bed with a heating pad.I think I have another cyst on my ovary.Thanksgoodness my dh was home to watch the little ones. I am really counting down the weeks to my surgery.I am also having my dr do a saliva hormonal test on me to make sure that all my levels are on the right track as they say that can contribute to me feeling tired.They think maybe my adrenals are not working like they are supposed to especially dealing with the endo too.I also have tremendous hip and leg and lower back pain and the surgeon has said that he is sure his surgery will help this too.My pain is in my buttocks too.very weird to describe.I will send you a link to the surgeons website.Their you can see how he does the surgery.

[hobi13]

I would like to for the first time ever tell my story.  I am 38.  When I was 20 I was living in south Africa and was dianosed with Endo, My gyny at the time said he would keep it under control by cautorising it, so I had my first lap.  Every two years I then had another lap to cautorise it again, as I was so young this was his way of keeping it in check until I decided to try and have children, even though I knew it would have to be done via IVF.  I moved to the UK 10 years ago, and my symtoms (symptoms) started again shortly after, I was put in touch with a gyny here, who told me that they cut it out and had another lap, when I woke up he told me he had got it all and that it was all over.  For 18 months I was fine and then the symtoms (symptoms) started again, when I went to visit him again, you could see he didnt believe me but he said he would do another lap, when I woke he tole me that he had never seen such agressive endo, I was stage 4, my uterus was stuck to my pelvic wall,and my womb was stuck to my bladder due to the endo, and part of my bowel was diseased too. He then put me through a mini menopause to control the growth until he and a bowel specialist could arrange to work together.  I had to wait a nearly a year until  they operated again, this time it was major surgery to remove the endo again, and do a bowel resect (they took two thirds away), with all the other laps I was back on my feet within days, but this one knocked me about for 10 weeks!!!!  Three months later I went through a bout of IVF which I am so pleased to say worked and I have got a perfect little girl now 2.  Then about 8 months ago the bleeding got more and more severe every month, to a point where I collapsed at work and they found out I was anemic to a point of needling a blood transfusion, also had kidney and bladder infections. And to finish it off the pain started again!!  I ended up back at the gyny and he operated again, when I woke this time, he said the endo has morphed and is now in the lining of my womb and he cant get to it unless I have a hyst.  He has put me on another mini menopause to try and calm things down until I made a decision, as I was hoping for more children,  With all the drugs I am on at the moment and the fact that they fitted a coil there is no rhyme or reason as to why I should be bleeding and have been for nearly 10 days, and low and behold the pain has come back.  I am seeing him on Mon and going to ask for the hyst.   11 surgeries and 18 years of pain is enough for anyone I think, and my poor husband feels so helpless seeing me like that.  So wish me luck, I have been told and have read that the only way a hyst will work is that if they get all the endo, well if it is all in the womb, hopefully for the first time in years I will be pain free.

[y2ranga]

Hi 24yrs ago I had severe endometriosis and 11 years ago I had a total hyst with both ovaries removed, I have not had hormone replacements and I dont have any periods. I was 43 when I had the lappy. I was advised not to have hormone replacements as I have a heart problem. I also have alpha thalasaemia and was diagnosed 4 years ago with Rheumatiod arthiritis and the early stages of Lupus. I experienced immediatly after the lappy symptoms of menopause and this begins usually about the time I would normally have my peroid. I no longer suffer the pains I did when I had endo and I do not regret having the lappy. I was unable to bear children and the pain that I endured throughout the time I had endo was so excruciating that to move my bowels had me in tears. At the moment I am thankful that there is no sign of endo returning nor have I heard of endo reoccurring.

[skeetelmore65]

Hello,
     I was really moved when I read what u had to say. I know how the pain is from Endo and my uterus was stuck to my colon and it worries me know to think that the doc(GYNO) did my surgery microscopically. She only made three incisions and took out a fibroid also while in surgery. I am suffering today all over and wonder if it has anything to do with the Endo that does come back. I was thankfully blessed w/two boys b4 having mine removed, but they left my cervix and that scares me too now. I haven't had a pap in going on 5 yrs. and that is bad. Due to my pain and working on going to NL and NS to fix that prob. I neglected the other. BAD..I know. I do have an appt. scheduled in May so I hope to get that cleared up and okay. I am willing to have another Lap. done just to make sure it hasn't invaded anything. The docs thought I had Hydronephrosis, but after having an ultrasound ruled it out and said nothing else @ it. Should I be worried @ that? It just scares me to live in a small town and not a good choice of docs except having to travel in which is awful painful for me.
     I don't have a lot of bowel problems in which make me feel somewhat good @ that, but I do still do one thing that brings back memories of Endo. and that is when I need to go to the bathroom I get this dizzy hot feeling that I remember ohhh so well. I pray that it hasn't gone there. Pray 4 me too if u would. I will keep u in my prayers as well. I hate 4 u to have the Hysterectomy. Is there any way u could try to have another child. It could be possible to get pregnant and put off the surgery. It is up to The Lord to bless u with another child. I hope so if that is what u want. My mom was told to start pretty soon after she had me bc she had Endo bad too. She waited too late and couldn't have anymore. So, if the doc thinks u could get preg. and u want another one maybe it would and could work. I hope the best 4 u.
     I was curious @ what protea said @ adrenals. My neck has what looks like my lymph nodes swollen, but had an ultrasound done and he said it was my tendons. That is strange, right? Why would my tendons stay that way, unless my neck surgery(something wrong w/it)...I wouldn't doubt it for I hurt so much under the back of my skull. It feels like I have a vice grip on it most of the time. I hate it. I wished I would have waited now to have the new disc pro that they put in instead of titanium plates and screws. I have been told that I have a screw that has been placed in an opening right on top of a nerve. FUN hey?... I believe it too. My neck has what looks like a thickness right under my chin. I have had my Thyroid tested and it's fine. What could it be? I AM JUST A MESS...but we all are right now hey..:)
     May the Lord watch over u guys and take care of u...I will pray...Take care and always...GOD BLESS.... Karen

[hobi13]

thanks for your reply and kind wishes, I would try for another child, it would have to be via IVF again, but the gyny, is concerned as I was bleeding so much monthly causing the anemia to be almost out of control, that I might heamoragge, and my husband doesnt want to lose me and I do not want to do anything that might cause me not to see my little girl grow up, I fought too hard to get her.  We have discussed adoption, which we are going to follow up when Leah is a little older.  I wish you all the best for your appoint in May you will have to let me know how you get on.  Its funny how many people have mentioned Thyroids, looking over the forum, I never saw a link but mine stopped working around the same time they found the endo????? I have got that under control with even more pills!!!  Does everyone else feel ike if you shake them they will rattle????