I recently had surgery (laporscopy) to remove one ovary and tube due to multiple cysts and endo. My question is- can the endo come back? Does it definitely come back and does it take a long time? Does anyone know? Thank you!
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.
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.
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 (achy) and extremely tired!! I cannot seem to get my energy back and it's been 5 weeks. I hope it hasn't come back!
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.
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!
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.
I had endo covering my uterus which my doctor burned off with a laser 7 months ago. Now I'm experiencing the same pain. I was told it probably not return because I only have one ovary. The other was removed due to cysts. Can endo really return so quickly and will a hysteretomy fix the problem? I'm 47 and in menopause. I also have fibroids in my other ovary. I went through pain for so long and was so happy to be pain free for a few months. I'm so depressed to be in pain again and don't want another surgery.
it certainly can come back. some women have to have several lap's throughout their child-bearing years. it will always be there until you have a hyster (there is no "cure"). that is why doctors put you on estrogen suppressants after a lap, because endometriosis grows with estrogen.
I'm surprised that I could be having the same symptoms so quickly. I see my doctor in a week to discuss what to do next. He didn't put me on estrogen suppressants or any other medication after the lap. He told me it was very unlikely that it would return because I only have one ovary. I don't plan on having anymore children (Though I feel for all you woman who are trying and I pray you be blessed with a child) Because of all the problems and pain I've been through a hyster is fine with me. Thanks for your post.
My pain was so severe that I cant discribe it. I yelled out and was double over and my doctor wouldnt give me anymore pain meds (he'd given me two typical prescriptions (30). I researched hysterectomies and decided that if I was one of them that had no sex life for the rest of MY life, it was worth it just to get rid of the pain. I couldnt take it anymore. The doctor who eventually did the surgery acted as though I was being mellow dramatic. After surgery she said that I had been full of the stuff to the point my organs had fused together. If you are going through pain take control and dont stop till you are satisfied with getting from your doctor EXACTLY what you want. If one doctor wont do it, theres another one out there that will. I am in bad pain now and I am praying that they find something in the tests that they are running, I pray it has not flared up again. Good luck and God bless to all of you.
This really upsets me reading this. There is no reason in the world that doctors should make us go years in excrusiating pain before they are willing to do something about it. I first started symptoms at 16 as well. I had to tell my doctor repeatedly that if she wasnt willing to do the surgery (hysterectomy) that was fine, to tell me and I would find someone that would. I thought my experience was an isolated case, but it wasnt. This is unexcusable for the medical profession to have their patience go through this. I even had a female doctor, I feel so bad for those who have male doctors, I am sure its even worse. Again, may God bless you all.
I had my first laparoscopy in March 2011 and its definitely back. The doctor said 6 months and he was right on the money. I can tell by the pain with sex and bladder and the bloating and wind pain. They couldn't get it all in the first place - its all over my cervix.
Now I have to decide what my next course of action will be...
i had a hysterectomy 16wks ago at the age of 29 just womb and right tube , then i got a cyst on my left overy ended up having my other tube and overy out with that op to remove cyst and the found endo on my only overy that was a wk ago im already getting pain back what do i do im in agony im 29 and my life isnt great with the pain and 3 kids any help plase x
laparotomy means open surgery where the surgeons make a big incision to your lower abdomen. they may take some organs out or excise adhesions etc.. while laparoscopic surgery (laparoscopy) is a type of surgery where they dont need to cut you open. they will do the surgery by inserting a laparoscope thru your belly button or umbilicus and another probe will be inserted thru your lower belly.
Hi all! I am glad am not alone! However, I have not heard a case quite like mine! I've had 3 surgeries to remove endometrial adhesions, diagnosed by a laproscopy & a biopsy which confirmed it. I underwent Lupron in 07 for 6 month which side effects were terrible (menopause, gained 30 lbs) but I felt great in all since of the word & sex was amazing during this time. I think it was because I was "pain free". However, it has come back!! At first I thought changes could have been because of my tubal ligation (i have 3 daughters), but it got so bad: the extremely hemorraging periods, with all sizes of clots lasting 12 days changing 6+ times a day & having accidents at night & the pain!!! OMG the pain was terrible, that I went to see my GYN who told me it sounded like Menorrhagia & put me on Lysteda. This medication was to help reduce the length of time & heavyness, also with the pain. However instead of helping me for 5 days it helped for 2 days & had heavy period w/clots, pain, ect for 8 days thereafter. So I went to see him again, then he tells me he thinks is pre-cancer cells not detected by papsmear (which was normal in Mar 11) so I freak because I had HPV precancer cells when I was 18 & underwent coone & a leep. I had a hystersocpy w/biopsy, thank God it was normal! Now he tells me it's ENDO that has come back! The thing is that the pain since Jan 11 has progressively gotten worst to the point that since May 11, I can not function, I can not drive, I can not have ANY sex since April 11, I can not do anything, sometimes I can't walk. I have gotten to the point where I've needed a wheelchair because my pain is so severe. Several times my hubby has taken me to the ER just for IV meds, because ALL the narcotics i have at home do not help me. I am back on Lupron for past 3 months & up to now the 24/7 constant level 5-6 pain has NOT GONE AWAY. At times when is really bad is an 8-9 (bed ridden) the pain just never goes away! I was told that if the Lupron does not work I need a FULL (Total) Hysterectomy. I went to see a 2nd opinion who is against a Total hysterectomy & suggested if Lupron does not work this time around then to have a Partial just leaving my Ovaries for hormonal reasons. They also told me that the pain may be a result of the lesions (scar tissue) that has developed due to past surgeries & the Lupron does not help this only surgery! I am devastated. I haven't been with my husband since April, I haven't been able to care for my 2 yr old as I should as well as my 8 yr old & I am my father's care giver who is chronically ill. This disease is terrible!! Has anyone experience constant pain like mine that doesn't go away?
I had endo since I was 16. I am now 32. I have had 9 surgeries and am still have pain. I did a lot of research and endo is caused by higher levels of estrogen in a womens body. A simple blood test will confirm this. Once it is confimed ,d it WILL be, you need to go to a health food store and by estrogen suppression cream!!! I swaer it works!!!! Only be taking it for a month( put cream on inside of arm) and endo is improving. After I take the cream for 6 months going to get another blood test to confirm hormon levels!!! Ladies in all honesty you need to read the book written by Kevin Trudeau " things they don't want you to know about" changed my life. Email me for more info. Ladies take control of your health, some times we have to heal our selfs!! ***@**** or find me on facebook.
I had lap done I was trying to get pregnant for four years no luck I went to so many doctor saying I was fine finally found one that found it along with cysts on my overease and vericos veins. In my pelvis area now I am back to lay around in pain n tired all the time do u think its back? Will I ever get pregnant?
I am glad that the cream works for you. But I will not work for everyone. Endo is too complicated as for some us there is also an autoimmune component. High levels will feed the endo but it is NOT the sole cause.
In one of the other post another person shared an abstract of a scholarly article where an endometrioma was found in a 18 MONTH old in Hong Kong. Her hormone levels were normal for a child her age.
So there has to be another component. I for one have known too many women (including myself) who could not explain away endo with just high estrogen levels.
i had surgery 5 days ago and my dr said he got all he could see of the endo. but i just started having real bad back pain and staying real tired again and i have started cramping real bad again what can i ask my dr to do and is this my endo be coming back again???
First is your doctor an endo specialist. If not I would recommend that you find one. You can do this by contacting the endo assoc to find one in your area:
Also has anyone ever looked into pelvic dysfunction disorder. Especially w/five surgeries. It is very likely that you have this. You need to find a pelvic pain specialist that person could lead to the help that you need.
I have felt so dismayed and enraged by what I have just read.
So much suffering and, unless you have experienced this horrible disease, no one, no doctor, nurse, friend, partner, can begin to empathise.
I had endometriosis since a teenager (not diagnosed but symptoms existed from the onset of puberty). Eventually, at the age of 40, I paid privately to have my symptoms investigated, and found that I had the most severe level of endometriosis. I had a full hysterectomy and took HRT (lowest possible dose I could find) for about ten years. Eventually I came off it after a breast scare.
I ended up divorced (no sex marriage didn't last). At 54 I found a man I wanted to be with who was kind and understanding about the lack of intercourse. Having decided that I had been cheated out of this part of life for a long time, I consulted with my female GP who prescribed vaginal hormone (oestrogen) cream to help with the inability to have sex. After taking that for two years, the endometriosis returned, specifically around internal scar tissue left by the hysterctomy and further and to my great dismay, around the episiotomy scar after child birth. The result is that sex is now too painful to even contemplate.
My advice to those who have severe form of this disease, is have the womb and ovaries removed and do not take HRT in any form.
I am from a medical background and should have known the oestrogen cream would have had an effect but I just jumped at the chance to have a normal sex life. You have to weigh it up and decide for yourself. There is no miracle cure, nothing you buy from a health store, internet, etc, is going to get rid of it.
My daughter of 28 is now showing signs and it almost devastates me to think of what lies ahead. We must make this disease more focal and fight to find the cause and once the cause(s) is established then hopefully a cure will be found.
Having said all of the above, apart from the pain around the scarring, my life has been so much better. I had to change from being a professional to having a less stressful job and the pain has gone. It took a while but I am glad I had the operation and found my life much more bearable and pain free in general. My confidence returned after a while and I can live a normal life or more normal than I could have expected.
Hi Sandy. I was diagnosed in 09 and have had pain from endo since I was 16 as well....I see a male OBGYN and he is awesome! I am having another surgery tomorrow to remove endo again and possibly my left ovary since my left side is the only side I have issues with. There is no cure for endo and no one can really say when or if it will grow back -- even with a hysterectomy you can still have endo. There is always a chance it can grow back or in other places. I also see a pain managment Dr. who helps me manage my pain. I have many other medical issues but please no one ever give up. Always have hope. There is a Dr. out there that will help and no one should ever live in pain. hugs to you all...
i have endo, i had the laproscopy done about 5 years ago, after the surgery the doctor put me on shots, luporon, it put my body into menopause for 6 months. the first round didnt work i was still getting my period. so we waited another six months and then tried it again for six months. not only have i had no pain, but i was also able to get pregnant, and i had a bad case of it. i would recommend lupron to anyone. you have to deal with a shot once a month, and hot flashes, and some mood swings, but it sure beats the hell out of having constant pain, and being hunched over all the time. oh and no pain during sex anymore either.
as far as a cause, i was told and read up on it, it happens when you are a fetus, your inside of your uterus doesnt develop the right way, it develops on other parts of your insides. i have it on my ovaries, large intestine and uterus. theres no way to tell if you have it untill you usually hit your child baring years. and i was told its not always passed down to our children, im the first one in the family to have it. i hope your daughter is ok.
Hi to all
I have had a laparascopy due to ovarian endometriosis around August 2010,then i went under hormonthrapy (Danazol) treatment for 4 months ,,,later on for a year i was feeling fine with no painful mensturation no more crumps neither low back pain but I was told it may reoccure back,,,,and now im again suspected for another ovarian endometriosis and multiple cysts unluckily as well!!! :/ seems it came back worsening with severe pain and low back pain hich is standable any more ...thoes bad symptoms just started few months ago.....I went to 3 Gyne for consulation and they all suggested (pushed )me to do laparascopy a.s.a.p and they did not prescrib me any med i.e. hormon thrapy to reduce pain for a few months then i go back home by my family and do what is good for me ....
im so afraid and wondering if they would remove out my ovaryy during surgery or not...even if i do not get them permission for that ,,,i would talk to my surgeon the day after tomorrow which in he would record another ultrasound examination for the last steps before LAP ....
I had a hysterectomy in May of 2010.. I am 24 years old now.. Had the surgery just after I turned 22.. I was on hormone replacement for about 6 months until they had to keep raising it because I was always having hot flashes etc.. Now after 2 of no estrogen I start taking estrogen again and 3 weeks later Im having really bad problems.. I started to spot.. Which scared me.. I have really bad pain and I called my Ob/gyn that did the surgery. They told me the bleeding isn't normal at all. SO they are trying everything they can to get me in.. I curious since I started the estrogen if they endo came back. I was diagnosed Nov of 2009 with stage 2 endo and earlier that year with low grade lesions. Im having pain that I had before but worse... My primary is writing a script for me for pain until i can see my ob/gyn..
I saw your post while searching for recovery after laproscopy. Did u recover from being achey (achy) and tired. Its been 6 weeks since my op and I feel worse every week. The gp thinks I am heading towards chronic fatigue/fibromyalgia.
I have a question, my doc told me that I had no endo after my last laproscopy. I was on Lupron a year before but was still having the same symptoms I had before. So is it possible that endo can go away for good or just temporarily? Because my doc said that I need to "get pregnant quickly". Also, I read that it can be dormant, so does that mean that my doc possibly just didn't see it this time?
I'm a 33 year old husband, my wife had her first battle with endometriosis about 6 months ago. We are trying to have kids so she couldn't take lupron or birth control pills to control the endometriosis. I think it has returned because she is starting to have pains again. It is hard for me to understand how she feels because I don't know the feeling. I used to get upset with her when she takes pain killers because of the effects in the long run. But I got over it because it eases me to see her free of pain. I sometimes would pressure her to go and see a doctor to see if the endometriosis has come back, I feel it's better to catch it before it turns into anything serious...she does not want to go to the doctor because she does not want surgery again. I feel bad because I don't want her to feel like i'm being insensitive when I try to help or give my opinion. I try to understand how she feels by going online and researching. My question to you all is how can I as a husband support my wife in her battles with endometriosis. I have a feeling she will be dealing with this for a long time since we are still planning on having kids, so the least I can do is be calm, be understanding and learn more about endometriosis and what I can do to be there and support my wife. Any advice........
Okay, I keep reading that all you need to do is have a hysterectomy and it will go away. Unfortunately that is not the case. Everyone knows that their ovaries are the cause of most of the estrogen in their body, but few, if any doctors will tell you that there is a part of your brain, the hypothalamus in the brain releases is too. I have been a sufferer of endo for going on 14 years though I wasn't diagnosed until I was 22. I have had 2 laps and 12 months total of lupron. Neither of them worked. I later found out that both laps were done in what I call the easy way out, they shaved down the endo and apparently didnt remove it fully. I never had any relief. I begged my doctor to give me a hysterectomy and she was going to until my insurance denied it because I was too young. I am now 26 and am still living with the pain. I am about to loose a job from it because I cant stand long enough to work much less keep from crying the whole time.
I guess what I wanted to say here is that yes your likelihood of never having endo problems again is higher, a hysterectomy isn't a cure all. There is still a chance that you could suffer even after that and also into your postmenopausal days.
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