Aa
Aa
A
A
A
Close
Avatar universal

Can endo grow back? If so, how quickly?

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!
56 Responses
Sort by: Helpful Oldest Newest
Avatar universal
izb
I started my period when I was 11 and have had symptoms of endo pretty much since then. It took me countless doctors and 2 visits to the gyno to be taken seriously and it wasn't until November 2013 that i had a lab and was diagnosed with mild endo. I am now 19. Although mild I was in debilitating pain throughout all my time at school and college and throwing up constantly and whilst the pain did subside considerably since the lab I seem to be showing symptoms again. However, these symptoms seem to be different - the pain isn't as bad as it used to be but is there and affects my day to day life in a similar place to where it was last time, I am also constantly tired and my hormones seem really off balance - hardly a day goes past without me crying. I am tri-cycling mycrogynon 30 and my symptoms seem worst when my period would normally be but for the pill. I don't know if I am just making a fuss about nothing and I don't want to give the drs and my gyno a reason to doubt me again, especially as I have moved away from home for uni so they are not drs I have spoken to before. Has anyone gone through anything similar or have any idea what I can do?
Helpful - 0
1 Comments
Hello izb,
I'm truly sorry to hear about all the pain that you are going through! I empathize with you because I'm going through a similar situation. I'm 15 and I have really bad endo symptoms. However, my parents and the multiple OBGYNs that I have talked to keep saying that it's not likely that I have endo just because it's "rare" (even though it's not rare). However, my OBGYN says that I'm too young to have a laparoscopy.

Will you please provide more details about the labs you had done to diagnose endometriosis? If there is a simple lab that can be done to diagnose it, it would truly make a difference because then I could get treatment (other than countless pills of Advil).

Kind regards,
Kathy
Avatar universal
Completely confused!  I was diagnosed with endometriosis a few months ago when I had surgery to remove a bowel obstruction in my small intestine.  Looking back I can see I had all the classic symptoms starting around the age of 16. I was fortunate enough to have two children.  I am on my 3rd medication to put me in a menopause state but the side affects are terrible. I took megestrol acetate for 2 months till I began having heart palpitations.  While on the medicine I felt "human like".  I felt energized and alive.  I wish I could have continued the medication longer. I would give anything to get rid of the fatigue and the pain.  Since discontinuing that medication, I have been put on two others which did little to control the pain and caused major bloating and weight gain.  I'm now considering a full or partial hysterectomy.  I am 37 and terrified of going through permanent menopause. If I do nothing I fear I would end up with a colostomy bag.  I am told that I fall in the 1% category of women who develop tumors in the small intestine. I currently see an oncology gynecologist.  He came highly recommended but I find it very hard to talk with him.  I feel so rushed and brushed off when I question him.  So my questions are...How quickly do the tumors grow back, should I fear menopause as much as I do, will I ever get rid of the fatigue.  Do I do the surgery????  Has anyone had more energy after a full hysterectomy or are the side affects of menopause similar???
Helpful - 0
Avatar universal
Hello, I am a 22 year old female. The endo pain started when I was around 15. Finally saw a specialist when I was around 16 and for put on the pill. When we found out that the pill was no longer working we tried an IUD for a few months, which was an awful idea, extremely painful. Then I got put on the patch(amazing) In February 2010 I had my first Endo surgery and I have had to  have one every year to follow. It is always the same thing it is great for about 8-10mths then all of a sudden BAM! ache in my stomach, painful periods, intercourse, you name it. My last surgery in 2013 was at a specialist about an hour from my town and he tried a different technique where he cut it out instead of burning it out. The only weird thing was when he went in there was less endo but so much scar tissue and adhesion and everything was just stuck together. Has anyone had this problem? Now 9mths later and the pain is back again. I am worried that more surgeries= more scar tissue. But leaving the scar tissue in will create a problem to. Any advise would be greatly appreciated. Thanks!
Helpful - 0
1 Comments
Hello! I had a Laparotomy about 4 months ago (stage 4) all over pelvic organs & abdominal organs. My surgery took over 5 hours! Well he put in an IUD & I saw you said it was a bad idea for yourself & I was just wondering why? Within the past week I've been in tears, staying in bed, taking up to 7 Vicodin a day!!! & THAT IS NOT OKAY WITH ME. Clearly something is wrong & I have this terrible feeling it has all grown back. I've done the Lupron Depot for a straight year, most ever pill & now the IUD. I'm starting to have concerns, if you don't mind letting me know what you didn't like about it, I would be very grateful!
Avatar universal
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.
Helpful - 0
1 Comments
I have been dealing with endometriosis for the past 15 years (I'm 30 now) and I've had 11 surgeries in the last 10 years. Everyone tells me to get everything taken out by my endometriosis goes as far down as my rectum and has wrapped around my appendix causing me to have it removed. Have you found any treatments that help? I have done everything from holistic approach, acupuncture, prolo therapy to supplements, pain meds and surgery. No doctor will see me long after I have the surgery to remove the endometriosis because I have the pain come back without 3 months of surgery  :(
Avatar universal
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........
Helpful - 0
Avatar universal
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?

Any advice?
Helpful - 0
Avatar universal
hi

I saw your post while searching for recovery after laproscopy. Did u recover from being achey 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.

Any advice will be helpful. Thanks
Helpful - 0
Avatar universal
Unfortunately i've been dealing withvit since i was 14 but i wasnt diagnosed till i was 19 and it ccomes back i've had two surgery's and it had wrapped itself around my bowel...
Helpful - 0
Avatar universal
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..

Is this possible.. Can this come back again..
Helpful - 0
Avatar universal
* which is not standable anymore
Helpful - 0
Avatar universal
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 ....

pray for me ,,,,,,please !!! :-s
thanks all
Helpful - 0
3124507 tn?1343358561
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.
Helpful - 0
3124507 tn?1343358561
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.
Helpful - 0
Avatar universal
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...
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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:
http://www.endometriosisassn.org/

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 hope this helps,
achilles2
Helpful - 0
Avatar universal
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???
Helpful - 0
Avatar universal
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.
http://endo-update.blogspot.com/2011/12/endometriosis-in-18-month-old-infant.html

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.
Helpful - 0
Avatar universal
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?
Helpful - 0
Avatar universal
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.
Helpful - 0
1809377 tn?1316520328
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?
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
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...
Helpful - 0
Have an Answer?

You are reading content posted in the Endometriosis Community

Top Women's Health Answerers
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
Normal vaginal discharge varies in color, smell, texture and amount.
Bumps in the genital area might be STDs, but are usually not serious.
Chlamydia, an STI, often has no symptoms, but must be treated.
From skin changes to weight loss to unusual bleeding, here are 15 cancer warning signs that women tend to ignore.