It never, ever, ever goes away in all honesty as long as there is something supplying your body with estrogen. Sorry for the bad news, but no matter what anyone tells you, it will always be present. It may lie dormant or appear in areas that cause less pain, but until your body is estrogen free it can always come back. I have had 3 laps in 1 year to find out that my case is so deep that another lap is pointless and where 3 docs told me so many different methods would work, I finally saw one of the best docs in the country for it and he was as frank as could be - Try to get pregnant and then we're taking it all out once you have decided you're done having kids. Good luck!!! It is a horrible disease that too many women must endure.
I've been dealing with endo since I was a teenager, I am now 43 y.o. In my 20's I tried depo along with other things and it always comes back. By now I figure if I can deal with the pain, then I will.
The other girls are right, it comes back as soon as you get your next period. Many women could get a lap every month and they would be able to find endo to remove each time.
How do they determine if it is endo? Does endo cause your insides to intertwine?
They diagnose when doing a laparoscopy, they may think it may be endo beforehand but it cannot be diagnosed outside of the surgery. It can wrap around your insides and bind them together, this can include your bladder, colon and intestines as well.
I had a Laparotomy done in Aug '08 to remove mild endo, being on Lupron for 3 months before, she got all the endo out!
A year later we still weren't pregnant so I had a Laporoscopy done and the endo came back and now it's at a severe stage............... now I'm having another Laparotomy to remove it..........
So to answer your question, yes it does come back and very quickly, i'm convinced it came back right after the surgery.
Good luck to you!
My endo was contained only on the one ovary and tube that the Dr. removed. He said that there was a 20% chance it would come back. I recovered quickly from my surgery (pain wise) and felt better right after than I do now. I am very achey and extremely tired!! I cannot seem to get my energy back and it's been 5 weeks. I hope it hasn't come back!
FYI - a laparotomy is when the go in via the scope and remove an organ (ie:ovary) so unless this was the case you had a laparascopy.
As for how quickly it comes back, I get about 2-4 weeks relief between my surgeries so it all depends on the case.
Not sure why your doc would advise that you have only a 20% chance of it coming back, until you have a full hysterectomy and there is an absence of estrogen in your body you ALWAYS have a chance of it coming back. Sorry to be negative, but that is just how this disease works. It feeds off of estrogen and until you stop producing it or taking it, the risk of it coming back will always be present.
So does that mean that if you have a total hysterectomy and need to take hormone replacement that it will still come back?
Yes. Most doctors who specialize in endo will not recommend hormone replacement after a full hysto because the disease can return when estrogen is produced in the body.
I am so sick to my stomach bc of what I have read. I have been suffering for so long and don't know if this is what it is, but I had Endo really bad as a young girl and was lucky to have two boys...The Lord blessed me w/them...I know that.
I just am wondering what to do now, bc the docs kept me on Hormone Replacement and I get a shot every 3 wks. I still have my cervix too. I haven't seen a Gyno in almost 5 yrs. I know that is bad. I was so miserable w/the pain developing in my body and never thought it could be Endo. I did see an episode of Mystery Dx tonight and showed a girl that had Endo and it went down her legs. I have places on my legs(both of them) where the muscles are like rings of missing muscle. Could this be Endo in my legs? I wonder if it could be true. I just thought it was the surgery I have had in my neck and have been told that I had a nerve pinched by a screw placed in an opening. I still might have a two-fold problem. I wouldn't doublt it since I hurt all over, not just my legs. The girl on the show was just having probs w/her legs and not being able to walk. I am having trouble walking. I limp so it is possible I guess. I am making an appt. 2morrow w/gyno. I am having an MRI done also of my hip. I guess I won't be getting a hormone shot until I know what is going on. It is due now that is what is bad on me, but maybe it is a good thing. ...:)
I wish all the best 4 u and pray that we get our lives back. I will keep u in my prayers...and u do the same 4 me..k
Take care and always...GOD BLESS.. Karen
Its possible, but highly unlikely that it would spread to that extent without some time of surgery that would have carried those cells to the other regions in your body. (There was actually an episode of House that really freaked me out about this...) I would think you would have some other autoimmune disease that would have progressed this along to that degree. I suffer from back problems and had most of my L5 removed in Jan 08, and so whenever my back or my legs hurt, I can't help but think that its because of that. Its easy once you had all the nerve tests done to follow those to figure out that its running from your back into your legs. I do get cramps that pulsate into the front of my legs that I know are endo, but everything else I blame on my back. Good luck with the MRI and PLEASE go see your gyn just to rule everything out. If you wouldnt mind letting me know where your pain in your legs starts and ends, I could probably tell you if its a back problem just from personal experience. It took me 6 years to get a doctor to diagnose my back issues correctly and take me seriously because of my age, & it was not an easy process. I wish you all the best!
You have the definition of laportomy wrong. I had one and I didn't lose any organs. It is just a bigger cut.
A laparotomy is the full abdominal cut, similar to the c-section surgery. A laparascopy is the 3 smaller incisions. Doctors can remove organs with EITHER surgery.
I was under the impression based on my last procedure in Jan, that the laparatomy would be done if they needed to remove an ovary, which was why I signed off on the procedure. I did not have to have this done, but am still confused as to why they would require a larger incision and how much larger that would have to be to classify it as a laparatomy.
Hi 2 u and to all,
I just wanted to say thanks for the info. I have made an appt. w/my Gyno and pray that it is just something that can be corrected and not something I have to deal w/the rest of my life...I pray.
I know I have had EMG's and it is strange how this happened...I had them done on my legs and arms over a yr. ago...both were fine. Now, I had them done last Sept. and it showed I had carpel tunnel. I asked the doc how bc I haven't done anything since last yr. and how does it just happen like that. He couldn't figure it out. I can't use my arms much or my legs for they feel as if I have run a race and can run or move anymore. They seem to ache when I barely use them. Just typing now does it and it hasn't been bothering much until this past month. I can't write that is for sure. I get maybe a small paragraph and bammm...it just cramps up. MY legs hurt all the time. Mostly behind my knees, but these rings are weird. I had an ultrasound of my neck the other day and showed him, who is a friend of mine....and he said that something is definately going on in my body...I said I know. I have cramps just if I move my foot wrong or try to scratch one foot with the other. I tried to change the chanel the other day and had a cramp start in my finger and go all the way up my arm to my elbow. PAIN...whoo I hate cramps. I keep a TENS unit on most of the time. My shoulder muscles tense up so bad. Hard as a rock sometimes and they are sore to touch. I can barely press on my neck, maybe where the T's start and it is sore and painful. I am so scared that I am going to have to have surgery and they are going to have to replace so many discs. It is so possible..it scares me.
U asked me where I hurt most on my legs and I would have to say on the top of my shin and as I said b4 under my knees. The places that have sunked in hurt so bad and they are on top. I thought on Mystery dx the other night it said something @ how something clumps up or was it blood collecting in the legs?
@ the laparoscopy. I do know that I have had two and both times they went through my belly button(navel) and when they did my surgery(Hysterecomy) they put 3 holes in my lower abdomen. So, I don't know @ a laparatomy or what it is. I did have a fibroid tumor in there that they took out and didn't even cut me open and I would have rather they did so I could make sure the they got all the Endo they could while they were there.
I wish all the best and take care always...GOD BLESS... Karen
Not that fibromyalgia is easily diagnosed, but you may definitely have that. I would discuss with your doctor as well. I was on Lyrica for a few months for my back pain, but it didnt help, it sure did mess my perception up for the 1st few days, but aside from that I couldn't tell any difference, but I do not have pain to the touch or cramping all over with severe fatigue. My pain is sharp and can be followed down a line from my back to my toes, my endo cramps are ALWAYS in the same spot and actually feel better the more pressure I put on them. Good luck and hope you start to feel better soon!
I had a laparoscopy for endo on the 25th of March 2010 and then 3am that morning I was vomiting and couldn't pass gas or bowel movements and had intense pain in my upper abdomen. They rushed me to the main hospital as I began having some tests and thought they had perforated my bowel. I then went through the ordeal having a 2nd laparscopy in 72hrs. It came to light it was an infection (which they drained) and luckily they investigated and hadn't perforated my bowel. They are not sure where the infection came from but maybe when I had an HSG ( to check if my tubes were blocked) done 3wks earlier I had a reaction with the dye through my tubes and the infection was spread when doing a wash out during the operation??
My bowel is still not back to normal and I'm struggling to function as normal but hoping it will all work itself out soonish. My platelets are still high but I heard this is normal? Also, I have achy joints and legs and headaches :( got my period now and it hasn't helped at all with the pain!! I feel the whole procedure didn't even help and has caused this complication!
If anyone has been through anything similar I'd be interested to hear if you
went on to have a normal pregnancy or your health in general went back to normal?
I am so overwhelmed with sadness in reading all of these posts! I had horrible pain for years and then they finally did a lap to diagnose and it was endometreosis. They said they had gotten all of it out, but sadly my pain was back within a week. I was in such a dispaire of pain and depression because my doctor could not do anymore surgery on me. He put me on Lupron for six months and I was never happier! I was pain free for about a year and a half. But then... it came back! It was that pain again! I sadly had to have a total hysteretomy before i was even 30! I am now 34 and it has been about 6 years or so since my surgery and have felt so much better. But recently I have had that oh so remembered pain and am terrified to see my Gyno. In fear it could be back and there is no way I want to go through it again. I wonder how could it be back when I take no hormones??
I had my original partial hysteretomy when I was 38 years old. During the lap procedure they found the endo. I began having a lot of pain in my abdomen again at 45 years old. I was in the ER two nights, then they did a cT scan and ultra sound. I had multiple masses on my ovaries, which they did not take the first time due to the endo involement and being unable to locate ovaries. I had the surgery to remove my ovaries, and clean up the endometresis. It was supposed to be a two hour lap surgery. There was so much endo in my stomach they had to disect each of my organs from it. It ended up being a 6 hour surgery. They accident cut my ureter and had to put a stent in. It was very hard to recover from. I am now 50. I too sometimes feel that familiar pain in my stomach and I am very afraid to say anything to the doctor. They did prescribe hormones, but I have not taken them for a year. I too would be interested in this answer .
The reason for a laparotomy is because there is so much endo that they just can't get it all with a small cut. Mine was everywhere and she needed a better look and so she had to make the incision bigger. If you need more information on this you can use google.
No worries, I get the gist of it. My case runs deeper than the laser is able to ablate, but I guess not widespread enough to cause more than 3 small incisions. I think my belly button would beg to differ though since its looks pretty terrible after 3 cuts in a year. I just found out that I was pregnant, so I am hoping that this will prolong my inevitable hysto for quite some time, although for that surgery I do qualify for DaVinci, so I believe those incisions would not be as large as a normal procedure as well.
I've has this disease for going on 6 years, and was just diagnosed in April with a laparoscopy. This revealed a mild to moderate case of the disease, yet I was in excruciating pain. It took a while to heal from the surgery, and they put me on Depo Provera in the hopes that It would extend the time in which it would grow back. I'm 26 years old and nervous about taking the depo because children are something I plan on one day....a few articles I've read say, there is a chance ovulation will not return if you are taking this kind of bc. which makes me want to get off of it for sure. any advice?? also, the pain has returned and over the past few months it has been almost as bad as it was before surgery. Is their a chance that endometriosis can grow WITHOUT a menstrual cycle?? I now have an enlarged kidney and painful urination. i'll be going to get a renal ultrasound tomorrow morning to see if it could be a ureter obstruction due to bladder endometriosis. How can this be if the endo isn't growing?? I am so confused, and sad about the quality of live I have right now. It is a comfort to know that other women feel my pain. So, thanks for listening.