no cure

[Lily1986]

I’m pleased to see the post telling everyone about ‘how their endometriosis was cured’ has been taken down.

There is NO CURE! Even if you have all diseased tissue removed you still have the disease. Some are lucky and don’t get a reoccurrence of the diseased tissue but for most the disease comes back despite complete excision.

I’ve got it very severely and have been advised the pain I’m in everyday is for life.

I’ve had multiple operations including two excision and removal of left ovary and both tubes. Some offered some brief relief but within months the diseased had returned, worse each time.

My next surgery will be a bowel resection, high chance of stoma and hysterectomy. However I’ve been warned this will not stop the disease from returning because there is NO CURE! Nor will it make my constant pain and extreme fatigue magically disappear.

Thank you to whoever took the post down!

[Lindle]

What is important is that the lesions are not the disease; they are manifestations of the underlying disease of the immune, endocrine (primarily) but potentially any number of other systems that might be involved in the pathogenesis.

We don’t know what the originating cells are derived from, that become altered into the diseased tissue. Sampson’s theory proposes misplaced refluxed endometrium as one source of peritoneal endo. Misplaced primitive endometrial cells laid down during embryogenesis are proposed for rectovaginal endo. Coelomic metaplasia proposes that normal peritoneal cells become transformed into the diseased tissue and there are other theories besides.

For those who truly have all tissue removed (if there was a way to quantify that which there isn’t) we can’t say that they still have the disease as we can’t know that when we still don’t know where the tissue comes from . If someone has all tissue removed at one point in time as far as any surgeon can achieve and never has any symptoms again and never has any further tissue found during the rest of their life, do they still have endo? We can’t know as currently the disease is defined by presence of diseased tissue. On that basis they could be considered cured.

If the disease were defined by underlying abnormalities of the immune and endocrine systems what would those abnormalities be, how would we quantify them in order to say they still have the disease in the absence of any further lesions?

There is no cure in so far as we don’t have any medicine to give or procedure to offer that will cure the lesions or the underlying disease. But whether or not for any individual the disease can cease to exist at any point in their lifetime is a different issue and one we don’t have an answer to.

[Sparkles2000 in reply to Lindle]

I’m so happy to read this as it all makes sense. Referring to the disease and its causes. I have always wondered if when you are operated on for a c section and then put back together in effect could this allow transmission of the cells on a very molecular level to other areas of the body especially if the cells are from tissues that are inside the uterus during the gestatational period which promotes growth.. just a question from a non medical perspective but rather a is it possible..

[Lindle in reply to Sparkles2000]

I don’t know if there is any correlation between the pregnant mother’s endometrium and endometriosis risk through dispersion to other areas. But it has long since been found that the endometrium of those with endo is already very different from a healthy person’s in ways that resemble endo. So I think the mother would already have to be predisposed to the disease and already have the immune/endocrine alterations etc. It’s an interesting thought.

[Lily1986 in reply to Lindle]

thank you so much for this information, it is extremely interesting and I hope you don’t mind that I’ve screenshotted it to refer back to. ❤️

[Moon_maiden]

Hi

Sorry you’re still going through it. Each op I’ve been told it won’t necessarily help the pain. Thought I’d turned a corner earlier today, felt much easier but alas it’s caught up with me 🙄🤦‍♀️ There are those who are lucky and ops do help, but unless they are at the end of their life can’t say for sure they were cured.

Hope you get some better days.

[Lily1986 in reply to Moon_maiden]

Aw thank you, I’m so sorry you’re still suffering too. I think the right word as another user mentioned is ‘remission’, some are lucky and it goes into remission following surgery and others don’t (typically me 🤣) . Best wishes to you ❤️

[Moon_maiden in reply to Lily1986]

Another word that likens the disease to a type of cancer, I just wish drs would acknowledge how bad it gets.

Hope you have a good weekend 🙂

[Lindle in reply to Lily1986]

It can also spontaneously resolve and/or become inactive. Deep nodular disease will become non progressive usually as it becomes mostly fibrotic tissue with little in the way of endo cells left to progress. That would not be in remission but effectively resolved if we defined endo by lesions. But as we know even inactive fibrosis can still cause pain. There will of course be some who unfortunately seem to have a very aggressive form that seems to just continue no matter what stage it reaches. Whether or not there may be further lesions to develop lurking somewhere we can’t say for any individual or in any general sense. I think the point is that no generalisation can be made as everyone endo is different.

[AllthatGlitters]

Hello i agree, I wish there was a cure but there isn’t, I have both adeno and endo and after 3 surgeries my life has only slightly improved. Hope you are well today x

[Lily1986 in reply to AllthatGlitters]

Aw thank you. I’m so sorry you’ve had very little improvement after 3 surgeries. We try everything don’t we? It’s so disappointing when things don’t help despite our best efforts. ❤️

[AllthatGlitters in reply to Lily1986]

Hello I know you are right we all try our best to do things that hopefully improve our lives. #warriors. X

[ccfd9]

There is no cure , however, it can go into remission. This remission can last for years. Part of the conundrum with endometriosis is that some women have plenty of the disease but no symptoms.

[Lily1986 in reply to ccfd9]

Ah thank you, remission is the correct word. ❤️

[Lindle in reply to ccfd9]

What would you mean by remission? If endo requires tissue to become altered into endo then that potential tissue has to be there somewhere. But we can’t know that everyone still has potential tissue after excision or after any fibrotic endo has become inactive.

[Bleeding-Soul]

and this is why I said no to surgery. My gynaecologist was terrible. He only wanted to operate on my endometrioma but when I told him about the risk of reoccurrence he told me to stop reading things online. I obviously didn’t trust him with my womb and I was discharged and I have had to self manage for 4 years but so far I’m happy with my decision

[Lily1986 in reply to Bleeding-Soul]

Thank you for your reply. This is very interesting as I find myself saying almost daily, “I wish I’d never had that last excision surgery. I wasn’t in daily pain before that surgery.

Then there’s the thought that if the disease is left untreated it could cause more and more damage and don’t know how much worse it could have become.

However, due to it taking 15 years to diagnose it had already done a LOT of damage but I still was able to live a very active life prior to having any surgery.

It has left me terrified of further surgery knowing it could make things even worse (hard to imagine that’s even possible right now). Then there’s the chance it could really help which is so tempting.

Thank you again and best wishes to you ❤️

[Bleeding-Soul in reply to Lily1986]

Hi yes, I don’t regret my decision the literature was clear that endometriomas come back and recurrent surgeries damage ovarian reserve. I haven’t had children and wasn’t taking the risk. Also the gynaecologist seemed money hungry and like I said I wouldn’t trust him. I’m very fortunate that medication has worked so well for me and thank God that my endometrioma also went on its own and my most recent US was normal and as I don’t have periods any more I live a very normal life. The complete opposite to when I was in denial about how bad my periods were and would be in agony and hell essentially. I know not everyone is as fortunate and my advice is do your own research and do what’s best for you

[Greenlady48]

so glad you said that.

Makes me mad when people say they are cured.

Some are lucky and that they never have it regrow

Also all the ‘drs’ that told me that the disease will go after menopause

I almost peed myself

[Lily1986 in reply to Greenlady48]

Thank you. Absolutely, that’s so true, my blood tests say I’m post menopausal for the past 6 months and the pain is worse than it’s ever been.

My specialist also keeps saying the disease will “go quiet” 🤣 haven’t had periods regular for years but the disease keeps growing very severely. Very outdated and untrue facts still being given to patients here in UK.

[Maggieeeeeeeeeeeeee]

there are successful stories of woman who actually were stage 4 and now are Endo free. There are few books about it too …