Endometriosis UK
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Hi all,

I really enjoy reading blogs and questions and am really writings because I just need some support and advice.

Diagnosed about a year ago with endo and been given painkillers/anti inflammatory and stuff to reduce father flow. This was my choice as didnt want to have operation and also not at all keen on hormonal treatments due to previous experiences. Always had fatigue but last month has been horrendous (bit dramatic- sorry!), and pain is not really being managed by current painkillers.

Is the surgery worth it? How much hassle is it e.g. How much time off work did people need and does it make a difference? And what if they don't find anything?


2 Replies

YEs the surgery is worth it, because it is the only way to be diagnosed,

you cannot be diagnosed with endo without having surgery, so at present you have suspected endo, and you really should find out if what you are suffering from is endo or something else and know what you are dealing with.

If you had a suspected broken leg, would you refuse an x-ray to check the damage?

or just keep walking on it by taking pain killers.

If they find endo they can tackle endo lesions and remove some of them for good, they can cut back all the adhesions that will have grown and stuck your organs together which can make going to the loo a lot easier if you have had increasing difficulty before.

It doesn't always make the what ever you have less painful, but that's a risk we all take, and sometimes it certainly does ease a lot of the pains.

Recovery depends on what you needed to have done, and what could be done inside.

A basic lap op recovery is 2 weeks at superhuman recovery best up to 2 months or so.

A laparotomy (big hole) is really minimum 10 weeks possibly longer.

Unfortunately surgery doesn't give much of any improvement in fatique in my experience. I'm still as shattered now after the smallest activities as I was before surgery.

And if I get sick with anything else, like I've just had a week in bed with flu, I am zonked out for much longer than normal people who had the same bug. It isn't always something you can blme on medication. chronic fatigue is a bit of a mystery but very real.

Is most of you pain when you are 'on' your period or ovulating or is it now at the everyday stage? If you can get a proper diagnosis, it should make it a lot easier to get stronger pain relief from your GP.

You might also want to consider having a go at the Mirena Coil which can be installed during the lap op too (that is the best way to have it put in) and if you can put up with a few more painful periods till it kicks in in 4-6 months time it could be just the ticket for stopping the pains and getting you off having to take strong painkillers and drugs to stop bleeds.

It doesn't suit everyone, but there are more happy Mirena Coil users than unhappy ones, and if it doesn't suit you it can always be removed with a lot less hassle than it went in.

If during surgery they don't find endo, it doesn't mean there isn't endo, just that they didn't spot it, but they can still clean you up inside, make sure the adhesions are cut back and the ovaries are clear and your fallopian tubes are clear incase you want to try having a baby in the next few years.

There is a lot of reassuring can come out of having surgery and actually knowing what there is happening down there, so I would advise to have it.

I knew i had problems down below, but I had absolutely no idea I actually had stage 4 endo till I woke up and was told.



I know what you mean about not wanting surgery, it is a really scary decision to make. But I have had 2 surgeries now and I think they both have been completely worth going through. When discussing whether or not to have my 2nd surgery with my doctor, she told me the only question is when to have it, not if to have it.

My last op was key hole surgery, I was in overnight, but sometime people can go home the same day. I had a week off work and then my first week back I was just slow moving and a bit tired. Everyone knew I had had surgery so were extremely helpful and offered to do things for me to make my life easier.

My first surgery was a laparotomy, to remove a large cyst. My recovery time was about 4 weeks, till I was bored out of my mind and decided to go back to work then probably another 6 weeks till I was back to feeling like myself.

Surgery gave me answers to a lot of my questions, but as always has caused me to ask a lot more now too. I was extremely scared that they would not find anything then people (family and my partner) would wonder what I have been complaining about. If they don’t find anything, ask for another doctor to figure out what is causing your pain.

I have found the hardest thing about having Endo is not knowing how bad it is until after the surgery, which in a weird way is quite reassuring in itself.

I wish you nothing but the best of luck for this difficult decision. If you need anyone to talk to about this, please feel free to message me.



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