Can Endo grow with having no periods?

Hello Ladies,

I hope to start this question off and get a few answers back.

Basically, i was diagnosed in 2010 through a lap and was then told to stop my periods so it doesnt grow and that is the answer to controlling endo. However, Since then i have done as told and havent had a period since! lovely in some respects and worrying too (i wonder if this will alter my chances of getting pregnant, make them worse the next time i do have one - terrified of having a period in future now)

anyway! im suffering pain day in day out and am told its impossible for the endo to have grown back with having no periods and will not be given another lap to see, am just being shoved off to someone else.

So - the big question i want to know is - is it possible for endo to grow back without periods- just so confused.

Thanks

Danni xx

9 Replies

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  • They do seem dismissive.... I'd ask on this facebook.com/groups/3530871... forum on facebook... there are some really helpful prople on there who seem to know alot about the medical side of things.

    maybe being "shoved off" to someone else is a silver lining... that "someone else" may be better than the person you are currently dealing with *hugs*

  • Hi, I don't have a medical background but my answer to you question is a resounding YES! I had litterally a few periods after my last massive op to clear my pelvis and have frozen pelvis again just 3 years later. I did read a paper a few years ago about endo cells producing their own hormones and growth factors and adding to their own proliferration outside of the normal hormone cycle. As I say I don't have the medical background for this but it seems on a biochemical level there is enough to say it does grow but there maybe more recent reasearch to contridict this.

    My advise is that if your consultant is fobbing you off saying (and I am paraphasing) "I did a great job so it can't possibly be endo that's the problem" go and see the new consultant. I have seen 5 so far. I have been told in the past that they did the op so my pain is not from endo or its not come back that fast but the reality is everyone of us is different and it may well be that yours has come back, or it has created a new problem. Don't let them send you away until you know what's wrong. I find asking "so what do I do now?" or "what's the next step?" Can help to prompt them into giving you a usable answer.

    I hope you get somewhere with them soon.

    xx

  • ooh if you still have a link to that paper I'd be really interested in reading it. I wondered whether endo cells produced their own hormones and whether that had an effect on acne x

  • Hey, sorry it was years ago I had a hard copy I printed off from somewhere and I can't for the life of me remember where lol. I do have a folder of journal articles I have collected over the years I will have a look through them and see if I can't find it in there for you. xx

  • Just had a quick look at The journal of Immunology which I have a suspicion it was from. If you go to there website and search endometriosis there are 55 journal articles that come up I think they are all free to read. The couple I checked where free at least. Happy reading xx

  • hi i was first dignosed in 2009 but was having problem for many years before and did not have any periods due to being on depo injection my consultant said there was still chance i had it and when i went for a laproscopy it proved his suspicions were right i had it on my pelvis and some on my bowel. after few months of the operation i decided to try for a baby was still not having any periods even though i was off depo my doctor said i oviasally was not releasing eggs yet as it can take up to year to get fully out your system well i fell pregnant in october 2009 but sadly lost it on xmas eve. then fell pregnant again in the feb but lost again still with no periods i then got sent back to my consultant who said keep trying im ovisally releasing eggs but not having period which comfused me in march this year i had baby boy my bleeding and pain got really bad so they put me on the marina coil which has stopped my periods but yet again in agonising pain my consultant says in some cases it can still grow without periods im now waiting on a other lapo

  • Yes I have heard it can grow back when periods are absent, and it also true with people who have had hysterectomies.

  • hi! i havent heard of the endo cells growing like that but i too was diagnosed with endo last year through a lap. ive had that one surger done and ive been told by my old dr that did the lap that i would probleyhave a hard time getting pregnant. this is our second month trying and no luck :( and this month i didnt have a period and its not due to pregnancy as all the tests were negative. ive never heard of stopping your period so it wont grow. everyone ive known that has had it in my family theres has all grown back but idk how fast or anything. hopefully with your dr passing u on to someone else then they can find out what is really going on. ive had to switch doctors and the one i have now is great so it may be a good thing they are passing you off to someone else. hope all goes well!!

  • Hi, i know this is an old post. But just wanted to say that i was diagnosed with pcos at 19 because my periods had stopped completely at 18 (they only started at 15) i do not have periods at all (unless on the pill or after flying (weirdly) and i have recently also been diagnosed with endo following a lap. So yes it can grow when periods are absent because i have no period....but i have endo :(

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