Why was it that 5yrs ago I was aloud surgury for my endo, now it has come bk exactly the same n theve giv me the coil ?

[Stephanie1987]

extremly upset as im suffering more now with this dam thing than i was with the endo part of me thinks it was to save abit of money !!!!!!!!!!!

[Hidden]

I think your right about the cost side of surgery.

I haven't had a laparoscopy in 10 years. And despite being taken to hospital in an ambulance as an emergency in February. The pain was

extreme and I spent three nights in hospital,but I still wasn't offered a laparoscopy!

I have had Endo for 20+ years. I had an MRI scan in December and it showed ovaries stuck to uterus, and the right one is attached to my bowel. I have a leaking chocolate cyst, Endo in my POD, diffuse adenomyosis and a fibroid.,. But still they want me to try all other treatment before they even discuss surgery.

It's very frustrating. I've completed my family and have no use for my uterus anymore. I'm in daily pain, extreme fatigue and bowel problems. But they still won't give me a hysterectomy and excision surgery!

I'm just not sure what we can do!

Barbara x

[Impatient]

It is a bit of both. If you had had the coil in after the previous surgery you my not have had the re-spread of endo that is cusing your pains this time round. Stopping your periods after an endo surgery is the best way we have to reduce the risk of new endo spreading.

The are different theories about how endo spreads but one sure way is in backflow bleeding along the fallopian tubes - of your period blood mixed with endo cells. If should fall out the vagin as a period - but can escape in the wrong direction wreaking havoc by heading along your tubes instead.

The Mirena once it is working stops this way of spreading endo.

Luckily having mirena does not prevent you having surgery on existing old endo.

So if when the mirena gets to work you are still having lots of pains despite not having periods and period pains, then surgery to investigate is an option.

It may not be endo - it could simply be scar tissue called adhesions growing from the old surgical wounds where the endo was previously removed.

But it could also be more recent spread of endo.

Either way - Mirena will help in your long term battle with endo and you really should give it your best shot to get to work. 4-6 months to stop your periods, and when that happens - it saves you a fortune in tampons/towels, time, painkillers, and all th other expenses of having periods ruling a quarter at least of every year.

How long has it been in for so far? It took me 5months for my mirena to stop my periods and transformed my life. I wouldn't be without it now. It has been amazing but it does take settingling in time and if you can stick with it the rewards can be well worth the wait.

[Hidden]

Hello impatient,

Wouldn't it be more effective to have the Endo excised and then the mirena put in?

The mirena has no effect on Endo that is already there, so get that cut out and have the mirena put in to stop periods (after it settles in) and prevent more Endo developing ?

I really don't understand why we aren't offered more surgical intervention especially excision surgery.

Barbara

[Clem01]

Excision surgery is only done by certain gynae endo specialist & not everyone can get referred I use to see one when I went private now I'm doing NHS I cnt as he is in England & I live in wales. It's a joke!! So the last two times I've had it lazered again. Excision did last longer I had 5 years pain free. I think they should do it more. Xx

[bingobongo]

I personally think that the Mirena coil actually causes blood stagnation- in other words prevents the flow of blood.

I think that it is far more cost effective recommend a mirena coil and the hormones with it scare me! I agree with the comments to have the endo excised.Good luck with some speedy action.

[stevieflp]

Hi - I have just taken part in an article for a magazine on Total Peritoneal Excision surgery which I underwent for advanced endo over 3 years ago and have to-date remained free of any endo pain since. The surgeon will be discussing the procedure and I have given my side as patient/outcome.

I have tried to use the opportunity to stress that the problem re endo from a patient’s perspective is that it does feel like a minefield out there of mis-information and consultants with differing degrees of skill and knowledge with an array of treatments being suggested with no consistent approach (ranging from medical treatments (drugs which are only suppressive and for temporary use) to varying degrees of surgery.

I said for many ladies, it is an average of 8 years of GP visits to finally be referred to a consultant for endo to be investigated, after everything else under the sun has been checked out and time wasted (endo is often mistaken for urology infection/IBS to just painful period/low pain threshold/needy patient). Even referral to a consultant is often just the beginning of a long and sometimes traumatic process as GPs tend to refer ladies to whoever has the title 'Gynae' at the local hospital. They all have such a wide range of specialism (fertility /oncology/ obstetrics/ hysterectomies etc) and some really are 'general' with a broad spectrum of knowledge but not necessarily specialising in endo/endo surgery.

I said to the journalist that anything that can highlight the problems with current general endo treatment and that there is in fact a really good surgical procedure that has been available for about 12 years I believe. It is a shame that more surgeons out there have not taken up Total Peritonel Excision surgery and it is not available as a matter of course on the NHS. Many surgeons do excision surgery, which is really good, but that is generally removing patches of seen endo and not the same operation at all. Any endo left behind can go on to cause further problems over time. We need more surgeons to make it more widely available/standard treatment for ladies wishing to go down the surgical route. Obviously there is no guarantee with any surgery but surely the NHS could save a fortune on drugs that are only suppressant/temporary/ and do not address the actual endo, save numerous repeat operations and save ladies an awful lot of trauma, disruption and heartache in some cases and enable them to more quickly get on with their lives.

Only a few lines of what I said will make it into the article but I thought it was a good opportunity of getting on my soap box.

[Hidden in reply to stevieflp]

Hi Stevieflp - well done for speaking up about excision surgery. Can you let us all know when the article becomes available if possible - I'd be very interested to read it.

I have a few questions relating to the Total Peritoneal Excision surgery (as I am seriously considering having it, maybe after giving IVF a try although probably should do it before IVF but time is not on my side)... The questions are..

Are there any long term impacts of removing the peritoneal lining? Is it safe to remove it completely, does it control fluids in the abdomen or does that take care of itself, I presume so

Does this surgery stop ovarian 'non functional' ovarian cysts from occurring, for example chocolate, or multi-sepated cysts?

I'm just a little concerned about those few things - which is most likely stupid of me, considering the havoc endo is already playing in my life.

Many thanks.. and it's great to hear someone who is free of pain.

[Brownlow in reply to stevieflp]

Hi Stevieflp,

Thanks for speaking up. Hopefully your views will make it into the article. I'd also like to know the publication.

My questions about TPE are the same as Yellowrose's. My understanding is that the lining heals itself and effectively regenerates. Not sure if this is correct.

Re cysts on ovaries, my understanding is that these can be excised but cysts could reform and would not necessarily be endometriomas. Again, not sure if this is correct.

It would be so helpful to learn a bit more about this as I am also considering this surgery.