does endo spread or move or whatever you want to call it

[kayjayne]

Hi

Doctor is trying to tell me that my pains could me my endo that has spread or moved into a different position is this right?

No arguments on here please I just want to know if my doctor is right or not

[lausa]

I've seen people say on here that it doesn't, yet endometriosis UK says it does? I'm confused too!

[Hidden]

Hi Kayjayne

Yes I've read that it can move or spread. I had it in my Ovary and now it has completely gone, but I have now been diagnosed with Adenomyosis and not sure if the pain in my back, bladder and rectum is this, or the Endo has moved. I also get nosebleeds and earache a few days before my period when not taking a contraceptive and I have heard it can move to the lungs and brain. I wonder sometimes, but best to keep the wild imagination for more creative constructive things I think. ;0)

Keep positive and everyone's experience is their own so don't stop believing in yourself, you're the only one that can live your life. Big hugs jen

[Timothy31]

Endometriosis does spread and can appear in places it hasn't done before. All of my doctors, nurses and gp's say the same thing. It's on of the reasons doctors want to treat it with contraception and surgery to stop it from spreading and continuing to grow and cause pain as well as infertility.

[Petunias in reply to Timothy31]

Hiya. Your right that many doctors and nurses contnue to say it spreads but the up to date reseach actually prooves otherwise. If al of it is effectively removed by an excision surgeon it doesnt regrow.

[Timothy31 in reply to Petunias]

Well it obviously spreads.. you're not born with endo everywhere and this is also how people can go from stage 1/2 to stage 4 very quickly.

Let's be honest there's all sorts of research being done that doesn't make the same conclusion as the others. One day we'll know for 100% but for now the professionals are saying it does spread.

[Petunias in reply to Timothy31]

Actually they have found endo in foetuses - so youve actually summed up part of the current thinking that it is laid down in gestation and it maures up to about the age of 25. So.... if we get an endo specialist surgeon who is able to identify all areas and then efficiently excise them - it is unlikely to cause further problems - great news as it means that in the right hands ladies do not need to undergo numerous surgeries or remain on hormone treatment for fear that it will return.

[Petunias in reply to Timothy31]

Some great conversation threads on EndoMetropolis tonight addressing this misbelief. If you're interested the questions to follow are'If all endometriosis has been excised at the time of hysterectomy, what are the chances of endo returning?' & also ' Does everyones endo advance stages if left untreated?' You may ( or may not) find them intetesting and useful.

[mrschuckles in reply to Timothy31]

Timothy the reason your doctors want to 'stop the spread' of endo, with contraceptives is to turn off eostrogen. The mis belief is that this will stop irritating the endometrial cell and therefore stop the pain. Again, because your GP and docs are not experts they fail to understand that the endometrial cell can actually produce it's own eostrogen and will not 'die'. Although pain can reduce because eostrogen is greatly reduced, it will not kill the cell. This is why removal of ovaries to 'cure endo' is wrong I am proof of that x

[Zoereilly]

Totally agree with Timothy31. Yes it can move/go additional areas. I have this now, pain in back area on one side. Op next Monday. Fingers crossed!

[mrschuckles in reply to Zoereilly]

You pain in the back area Zoe probably means you have rectovaginal endo, probably in the 'pouch of Douglas' an area between your vagina and rectum. If you have problems with bowel movements (feeling like you haven't finished) and painful intercourse, these are classic symptoms. Cutting out the endo from this area will stop recurrence. Good luck x

[Petunias]

If you have the endo cut out rather than just the surface burnt away there is a very low chance of reoccurrence. However not all surgeons are adequately skilled to identify endo an then to effectively excise it.

[MrsSpadey]

Im going for a laparoscopy for same reason as my pains moved up my left side now onto my bowel xx

[Petunias in reply to MrsSpadey]

Hi Mrs Spady are you with a specialist? Good luck with your lap x

[Gemx85x]

Endo can spread as some of it can be loose and attach its self anywhere cyst cause loose fuild which can move round.

[Petunias in reply to Gemx85x]

Hiya i have heard of 'free fluid' when a cyst bursts but my understanding is that it is extremely painful at the time but the fluid itself is not endo and so does not cause new endo to grow once the fluid leaks into the pelvic cavity.

[Sunflower846]

There's no proof that Endo spreads. I've spoken to woman who have had proper surgery from good surgeons and had no issues after. I've had 2 surgeries which have both been incomplete which is the reason I have continued problems. Cells can leak out chemicals causing inflammation but nodules of Endo is where it is and it can really spread. If those nodules are cut out to the root then there's no reason u should have continued problems. It's a known fact that consultants are not skilled enough to remove Endo properly saying to the patients Endo grows because no way would consultants admit to not doing ur operation properly. Petunias is correct and has given good links to read up on. continued problems are because operations aren't being done properly. I Have stage 4 and its believed I've always had stage 4, it's adhesions that continue to get worse over time.

[Mistiek]

Ok... I'm confused now! I had endo removed last year in my left ovary... no nosing or symptoms since then until Feb this year. Pains were totally different. In sept in had another lap and endo removed from my uterosacral ligaments. Which was not there last year! So it has to spread... or get there somehow... I ha e a very good surgeon so trust him a lot. He has had good reviews and he was the one who diagnosed me when doctors fobbed me off...

I now have adenomyosis too so will be having a hysterectomy early Jan.

[Petunias in reply to Mistiek]

Hi Mistiek endo can be difficult to identify - it can present in different colours and sometimes even good surgeons miss it - but specialists who are more aware of the different varieties of presentation will identify areas of endo that other surgeons miss. Thats why there is a push to get endo specialist centres in the uk however even then it is not guaranteed that the surgeon will be expwrt enough to identify all of it. Was is known now though is that if the endo is removed effectively that it will not regrow so hopefully now that the endo has been identified and removed from your uterosacral ligaments that youll not have any further problems - as long it was completely removed and there hasnt been any areas missed. X

[Mistiek]

So is the new research now suggesting that the endo is not cells spread from the womb? Because that's where I thought it came from?

I have only ever had stage one... its a bit worrying that last year there was nothing on my uterosacral ligaments and this year there was...

Because I have to have a hysterectomy for the adeno... I was hoping this would prevent further spreading of womb cells... now with what everyone is saying this is not the case... ?!?!?

[Petunias in reply to Mistiek]

Hiya. It’s all good news because your endo has been removed and as long as the surgeon has been able to see all the endo and has properly cut it out it’s reassuring to know that it won’t simply ‘regrow’ back or ‘spread’ or ‘move’ to a different location so that’s good…... It's not new research it's been known about since the 80's but for some reason doctors are still happy to push old thinking. I'll try to explain it as much as I understand it. Basically the idea that it spreads / regrows and originates from the womb was only ever a theory from the 1920’s! (As Mrs Chuckles rightly says above it is known as retrograde theory or Sampson's theory) It has never ever been proven. Whereas since the 1920’s things have moved on a great deal!! The more time goes on the more the experts are learning what endo is and how it behaves so they have known for about 20 odd years that the endo cells are very very similar to those from inside the womb but not 100% exactly the same. They also know that the endo doesn’t spread by backflow from your period because they have found endo cells in men – rare but even the existence means that it is not exclusively something that happens to menstruating women. It has been found in foetuses too, which again throws doubt on the whole theory that it is caused by cells from the womb backflowing but helps them understand more so the current thinking is that it is to do right back at gestation. The link that Mrs Chuckles posted earlier is a very good link to the Centre Endometriosis Care – one of the leading endo centres in the world. The truth is they don’t 100% know what causes endo for sure but the experts (not NHS doctors – I mean world leading experts on endo) agree that there is no evidence whatsoever of backflow and are very dismissive of it as a theory. It is considered out dated by the experts. If endo did spread and regrow then there would be no hope & that’s not a good place to be – whereas knowing that it doesn’t spread and that with good surgery by a good surgeon it can be removed completely then that means there’s hope for everyone.

[Hidden]

Summary of what was said by Libby Hopton is that the majority of women with endo have superficial endo, stage 1 or 2. Superficial endo appears on the peritoneal lining and rarely escalates to stage 4.

Stage 4 of the disease is where endo has infiltrated the ovaries, and this is an indicator in itself of severe and invasive disease - and they now believe this type of endo may actually be different to the superficial disease.

However, scar tissue and fibrosis can spread, particularly with surgery so this change areas of pain.

I have seen this myself in my own life. I have stage 4, and have been very poorly for years with it. But I have a sister who has no ovarian involvement, and she has peritoneal superficial endo - she was diagnosed about 10 years ago and had a scan recently - still no ovarian involvement and no progression of the disease from it's original state. I have a friend with the exact same thing, a small patch of endo diagnosed years ago with some pain, but not severe, and hers is still the same state (she has 2 uterus, cervix etc so she is scanned regularly and her disease has also not progressed.

Yes, this is only an example of 3 people. Me at stage 4, ongoing pain and problems, and 2 other ladies with stage 1 or 2, and over a period of 10 years neither have had escalation to stage 4.

Libby Hopton is researching this disease full time now, and David Redwine is a retired surgeon who has operated all his career on endo patients - and it's a theory they both believe. They rarely see stage 1 or 2 go to a stage 4. I find that utterly fascinating.