Head is spinning.. Just been diagnosed after 6 years of pain..

[GeorgieMarie92]

Hiya..

Iv just had surgery today and been diagnosed with endo .. I'm terrified as I'm only 21 and don't really know my choices apart from a gyno told me one of my options was early menopause..!! Iv suffered with this pain for about 6 years and even before I went into surgery my surgeon told me he didn't want to do this operation as he 'knows I won't find anything' he wanted to put me on more pills and send me home! It's like half 2 in the morning and I really can't sleep my head is spinning... Will I be on life times meds?? Iv got so many questions and just want to ask someone who knows...

Also does anyone else feel like a burden on their partner? Like every month they have to deal with looking after you and like they deserve better than this?? See what I mean head spinning!!

Thank you for reading.. Sorry if I have gone on and on a bit ...

[squidgy]

Hi. No need apologise, we all totally understand on here and everyone needs to offload or we would go crazy!

I bet u were tempted to day to your surgeon after the op "told you so!" after his blatant "there is no point we wont find anything!". That is really bad of him and def not reassuring before you are going under general anasthetic! I hope your recovery from the lap is speedy.

Re options. Yes one option is to go on hormone treatments such as Zoladex, Prostrap which put your body into a pseudeo menopause. This option is totally up to you. The Gyno I saw didn't want to put me on it as I was young (27 then now 30) and hadn't had children yet. They may suggest the mirena coil, but again some drs dont think it is the right thing for a woman who has not had children. They may suggest taking the contraceptive pill continuously to minimise periods. Pain releif is another option such a mefenamc acid.

Unfortunately it will be a lifetime of trying to find out what works best for you so that you can lead as near to normal life as possible.

Re feeling like a burden on your partner. Hell yes! I do and I am always apologising to my husband for being teary, not much fun company, not being able to go out much, feeling ill and in pain etc. That he deserves better than this, I don't know how he puts up with it etc! He says there is nothing to put up with, that he loves me and he just gets frustrated that he cannot do anything to make it go away and hates seeing me like this. I reassure him that him just being there, being understanding, giving me supporting cuddles and wiping away my tears is more than he can ever know. But It doesn't mean I stop worrying that I am a burden. We talk openly and honestly and he is getting very good at reading my "I'm fine" replies when really I am not and I am trying to put on a brave face.

I hope this helps a bit. Sorry I have rambled on a bit. Do you know when you got your post op meeting when you will find out more and be able to ask questions? I hope you do soon.

Wishing you a speedy recovery from the op and pain free days x

[Chrissie66]

Hi Georgie, and I am sorry you are all spinny

I know it doesn't seem like it at the moment, but the diagnosis is actually a good thing. Now that they know for sure what they are dealing with, they can put you on the right path to feeling better. What they do is different for everybody depending on how your endometriosis behaves, and it might take a bit of trial and error before they get it 'right', but you're on the right track now.

To answer a couple of your questions - endometriosis isn't one of those conditions where daily meds are always necessary or helpful, and there aren't meds specifically for endo. They could use the pill to control the hormone side of things which might also sort the pain out. Or they could start experimenting with pain relief until they find one that works for you. Then there is the injection that puts you into the temporary menopause - not nearly as scary as it sounds; it essentially just shuts your ovaries down for a few months which gives the endo a chance to calm down and gives you a break from the pain. As soon as you stop having the injections your body 'comes back to life'. That particular treatment isn't a walk in the park, but I reckon probably 95% of the ladies on here, myself included, have had it. Many of us swear by it, some of us don't get on with it, but it's a standard treatment for endometriosis.

And believe it or not, sometimes the best option for endometriosis is not to do anything at all. There's no cure for it, but it's not life threatening and leaving it alone is fine. In fact, as long as it's not an acute problem like an ovarian cyst that's on the point of bursting, or you're not trying for a baby which means that you need your pelvis to be as clear as possible, it's best to stay right away from surgery. Surgery creates scar tissue, and endometriosis LOVES scar tissue. Don't feed the endometriosis with scar tissue!

There's a brilliant book, Endometriosis for Dummies, which explains everything you need to know about endo in really easy to understand terms. I was diagnosed 21 years ago now when there were only two books on endo, and we had to order one of those into the bookshop! but now there is almost too much info. I've found the Dummies book to be the best one I've ever read, and even now I still dip in to it from time to time. Mostly on the days when I think I'm going mad...

There's also a section in there especially for partners. It seems to me that on the whole, endo men are very, very special people. I had endo when I met my husband, so he knew what he was getting into, and all these years later he is more of an expert than me! He knows the look on my face that means I need a hot water bottle, or a bath run, or a back rub, or just to be left the hell alone. I take him along to all of my gynae appointments because his biggest thing was the feeling of helplessness, of not knowing what he could do to help me, and this way he gets to ask questions himself.

I was terrified when I was diagnosed. I had no idea what it all meant or how my life would pan out. But 21 years later I'm still here - more closely acquainted with my reproductive system than I had perhaps envisaged! - but knowledge is power. It doesn't have to ruin or rule your life. You just have to change things around a bit

Good luck, and have a look for that book on Amazon (and all other good book suppliers!) And if there's anything else worrying you, just give us a shout

Lots of love

C x