I guess this is the question on everyone’s lips?
Had it all removed a month ago, now straight on the pill for 3 months back to back.. then I’ll havd my first period for 9 months after 6 months of zolodex previously
My worry is that first period will it grow back from one period.....
I've not even been told what my treatment options are and that thought is on my mind. What if it just comes back? I don't want multiple surgeries and I don't want to take synthetic hormones.
I've been trying to understand why I have endometriosis in the first place and it all seems to come down to a hormone imbalance. I'm just trying to understand how my hormones got so out of whack in the first place and research how to balance my hormones naturally. I accept I may need surgery to remove the damage but I don't want to just stay doing the same things that caused it only for it to grow back. There's a lot of info about diet, lifestyle changes and other ways of balancing hormones.
Have you had a look at any of this kind of stuff? It looks like a lot of work but I'm optimistic about it.
That’s why I’m on the pill to stop my periods it’s what the endometriosis nurse recommends and one I can be on for months at a time. So far no horrible side effects with this pill!!
I’m
Currently doing a gluten free / healthy diet with no red meat. I really believe you are what you eat and I’ve noticed a huge difference with my energy levels and mood from switching diets
There isn't at the moment any evidence or sufficient research to show why or how it comes back. There are theories as to why we get it; hormone imbalance, if family has it we're more likely to have it, some just have it like a random mutation, the current theory is it's like a retrograde (reverse) period; so rather than the uterus lining shedding downwards, some of it at some point went backwards into the fallopian tubes and back into the abdomen through the gap between the start of the tube and the ovary. These few lining cells then attached in the abdomen and so do the same as the uterine lining during the same cycles.
The rate it comes back is different for different women and the rate can also change after surgery or homone treatment; some women have reported it to slow down others it has grown back quicker. This is complicated by the fact that different amounts of endo cause different levels of symptoms and pain in each women; some may have a little endo and lots of symptoms and some lots of endo with little symptoms (I was the latter).
Hormones vs surgery; hormones will never shrink endo, it will however stop it growing, kind of like hibernation, so that only the times when you're off it does it grow, but then there's no knowing by how much...it's the same as coming off hormones and your body taking time to restart cycles with egg production; that can take time or start right away....This time can either be while you decide what you want to do next, it can be how you manage your symptoms for the foreseeable future, it can simply be that you don't want to worry about it all yet.
Surgery really depends on different types but essentially it removes the endo therefore slowing down regrowth. Scraping or sanding will remove just the top layer leaving a lot of endo but for some women that is all they need. Laser or heat will burn the top layers of cells off, so some endo will remain underneath, this is the most common under the NHS as it is the least invasive and faster recovery times, then the remaining endo can be managed with hormones. Excising or removing endo with surrounding tissue is the most effective and most invasive but it leaves no visible endo behind thus allowing the woman to have a relatively normal symptom free or reduced symptoms for 6 months to two years (I had this done).
I had a very long chat with my private consultant, whom was very thorough explaining everything
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There is some evidence but mainly from women themselves not in scientific studies or research papers for women finding relief by having a certain diet that can reduce symptoms of endo, this works differently for different women - I changed my diet two years ago and haven't seen much improvement - I did it to be healthier generally though so my aim wasn't specifically for endo symptoms but the changes are almost identical - I eat almost no red meat, almost no dairy, more protein (mainly chicken and fish). I've started to exercise more which means I need more protein - and it has helped my symptoms - I do pole fitness which is great, not what you think, definitely fun, and no one cares what you look like! There are other alternative therapies that women have found relieve symptoms - certain exercises, getting to know your cycles, alternative pain relief, natural balancing of hormones - bear in mind it all effects each women differently - I am still researching the alternative pain relief and dietary changes to reduce my reaction to pain as I don't like taking painkillers. I think all the alternatives can take from 6 to 12 weeks to have an effect which sounds like ages but that's three cycles so it's really not long in those terms.
As it stands it have no disease as it was all removed then they put me straight on the pil..
I mean can it only technically start growing back when my period returns?
They can only remove what they can visibly see so some will always remain, so it can grow back at any point as we're always producing hormones (we're mammals, even men produce some levels of female hormones as we do produce some levels of male hormones). the pill can reduce the amount of regrowth and even in some cases pause it for a bit. So yes it can grow back when you have your breakthrough bleeds - not technically periods as there was no ovulation. But that's only for 5 to 7 days every 3 months right? and you're keeping your hormones stable during the rest of the time by being on the pill so it'll be better than not being on it.
However the amounts of regrowth from person to person vary; so the pill may help or it may not, you can't really tell until quite a while later.
My surgeon explained it to me by comparing the endo to weeds, the excision surgeries are when he is weeding and the hormone treatment is a temporary weedkiller that only gets some of the weeds. I am sure by going on the right diet/natural remedies/exercising and lifestyle this can reduce the fuel given to the weeds to grow.I also have tried a gluten-free, healthy diet and that does help. Exposure to oestrogen is a bit like fertiliser to endo so if you can reduce this in your environment and diet it will mean less endo will grow. This is a simple description for a complicated subject but it helps me to understand why I have had four laps (excising at a bsge centre of excellence for endo) and numerous hormone treatments and yet it keeps coming back. I was told by my surgeon in the past, it is likely that I will need an op every two years, now I am waiting for a hysterectomy. Despite this, I keep positive and learnt ways of still enjoying my life. I won't let it get me down. Hope it works out for youx
I had a lap Monday and this is what I want to know too. Mine managed to grow despite being on the pill. Thinking back, my first period at age 13 I was doubled over in pain crying with horrendous bloating and heavy bleeding but thought it was normal after watching my Mum suffer for years. I do feel anxious about it growing back as recovery isn’t easy. They found mine in my rectum, pouch of Douglas, above my cervix and behind my ovaries. I hope this isn’t the start of multiple surgeries.
Have you found any improvements from your removal yet or is it still too early to tell? X
Hey just going to reply with my personal experience I too have almost the same history as you and had my first lap to remove as much endo as possible from around my uterus and bladder, they unstuck them all from each other but couldn't remove the endo on my bowel (bowel surgeon needed; they did a diagnostic and a full lap in one go so weren't sure how much there would be). That was November 2017 and I've had about 50% improvement on symptoms with it, I've booked in for a second lap to remove the bit on my bowel in July 2017 just to put my mind at rest that the rest has been removed and I can focus on what my symptoms are with the small endo when it comes back.
My consultant says that the women he treats with excision of endo (he doesn't do laser or ablation) he hears from in about two years (hormones or not) with enough recurrent symptoms to be worth mentioning and needing another surgery (the woman's preferred treatment to reduce symptoms) about a year later. Obviously this is his average, so some are less and some are more and that's only in those he sees.
From my research the only real scientifically recorded and documented way to help women with endo is excision; hormones should be used to manage symptoms in-between, these can sometimes mean that a woman doesn't feel the need for surgery or can delay it.
I spoke to my consultant about this in my follow up and he said it’s not a fast thing, it doesn’t suddenly accelerate or multiply. Having said that I guess there is no quota for what causes pain - I still have a large section on my bladder which causes no pain, whereas the small patches removed elsewhere are now more or less pain free!
Definitely won’t be developing if you’re not having periods though
Mine was back within 3months of surgery with a vengeance. Was on pill for first month or two but stopped as it aggrevated my IBS too much. Noticed the lump in my stomach almost right away. Depends if surgeon managed to removed every last bit of it. Combined pill should keep it in check to some degree.
I’m on the pill 3 months back to back she suggested that as less periods and therefore less blood lol
I still have the same pain pre op but the endo nurse said unfortunately even tho the endo is Removed many still feel pain
I was told that if i had it all removed the time scale would be approx 5 years on average. However from an individual basis the consultant said it was probably more like 2 for me.
I gues it is dependant on the individual and how muh hormone they produce and how thick the endo was before...when they started their periods and at what age what stage the disease was at.
Best bet is to ask the surgeon or consultant who done the proceedure if you are concerned.
New research states Endo is not a reverse period. It is genetic. It is a cell mutation. And it is fed by estrogen.
There are various theories and articles about all research into what causes endo but obviously it cannot be scientifically tested (we cannot give people endo) and there's no definite link that says if this is the situation then all those people will have endo hence why there's a few theories. Each can be discounted and credited by different ideas that's why it's currently very difficult to find a cure.
The theories are outline by the site supporting this one: endometriosis-uk.org/causes...
I'm not saying what you have found is incorrect, but it should be thought of as a different theory rather than it discrediting the other theories; all are plausible.
Thats fine. Im just stating what has been told to me by an endo specialist, who has access to the atest research. It took me years to find one that could answer all my questions and treat me.
Im not stating that the other theories are incorrect. I am not a researcher or a medical health expert and am definately not an endo specialist.
I had sugery 2013 for 2years i was great then slowly symptoms started to appear again. I was given the coil to stop it. Ive not had periods at all. The past 2years has been horrendous im now on anti sickness tablets, codeine n diarrhoea pills and hormone pills. Ive finally convinced dr to refer me back to gynae so i go in 3weeks ive got feeling theyll open me up again n hoping they will cos i dont want to feel like this any longer.
I wondered if the coil was to stop it how does it come back worse??im confused aswell lol x
It can vary from person to person. Also on type of endo. Theres 3 types of endo, superficial, endometrioma and deep infiltrating. It is then staged 1-4. 1 being mild, 4 being the worst. Then theres also varying levels of aggressiveness. Some endo can be savagely aggressive, some slow griwing.
I had/have stage 4, deep infiltrating, widespread, with endometriomas which is aggressive. It took weeks after excision surgery to return. It doesnt respond much to any hormonal treatment. But thats me. Some people can have lazer and not have any more trouble. Some people have excision and it never comes back. Some it comes back years later. Some months! And some like me are lucky to get weeks endo free! So the question really is, how long is a piece of string!
Endometriosis is an on going issue that stays with women until they hit menopause and even then some women still experience it after that.
Unfortunately, once you've had one surgery, you're more likely to have more in the future (that's what my consultant told me). I've already had two so far for my endometriosis.
My consultant and I discussed trying to avoid surgeries at my age so he has referred me to the local pain team to see how we can manage the pain that comes with the condition. I'm on pain killers ATM. And I'm also waiting to be seen by my local dietician to see if a diet will help manage the pain as well.
It's all about management really. But I can't tell you that it won't grow back. Unfortunately that's what comes with the condition..that its ongoing.
I was told that even if I have it removed I still might have symptoms
I was on Zolodex after having very large chocolate cysts removed and endometriosis that was so bad it had connected my ovaries to my bladder amongst other things.
I then took 3 months of pills back to back and this continued until I started spotting.
Then I just took the pill as normal apart from only having 5 day break not 7.
After being on the pill for 7 years I made the decision to come off it as I didn't want to be on it in the first place.
I have had check up scans over the years since but endometriosis has never come back!!
Touchwood 
Can ovarian cyst grow back after a lap?
How soon can I drive?
How soon has others endo returned? 
Anyone had endo grow back after having it removed? 
Can Endo grow with having no periods?
