Can endo grow back? If so, how quickly?

[southerngal503]

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!

[jengotherbaby]

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.

[Storm8541]

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...

[lilredi]

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.

[achilles2]

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

[kholmes17]

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???

[achilles2]

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.