arrrggghh

[jhellier]

hi ladies, having posted my question yesterday and have come to the realisation that my life will be operations, consultations, and alot of pain. the fact i may never have children or have to have more ops and proceedures to do so, is really , well not easy. i knew endo was bad but i thought after my 1st op and coil over a year ago, that was it, i never realised it could spread and get worse, and the worse thing about it is that no one understand its so aggrivationg. i recently moved and have been in absolute agony, so signed on to the docs today and after explaining i needed to see the doctor asap she said i could not make appt for two days until registrered, i am not in any ain at the moment, however i want a consutation and keyhole asap to see if it has got worse, do you suggest i go to the hospital?what should i do

[Chrissie66]

Hi

I totally understand how you are feeling with all of the uncertainty of endometriosis.

However, if you are not in any pain at the moment, or at least if you can manage the pain...the thing is, endometriosis doesn't kill us. It puts us through hell, but it doesn't kill us. Additionally, every time you have any extra surgery, the situation is made ten times worse; although a surgeon may be able to clear up what's there, as you have found out yourself, it will come back. And sometimes very, very quickly, and worse than it was before because every surgery leaves scar tissue, and the more scar tissue you have, the worse the endo will be.

Unless you are actively trying to have children at the moment or are in constant, agonising pain, it is highly unlikely that any surgeon worth his or her salt will want to go in there just to see what's going on.

I know in this day and age, when everybody expects answers to everything immediately, that this is a hard thing to appreciate. But endo is what it is. There are no quick fixes to it.

Again, as I said, I know it's frustrating, but going to the hospital won't help. You're going to have to wait it out, unless of course things take a dramatic turn for the worse in the meantime. Use the time instead to think about and write down all of the questions you want to ask about the endo and how it will affect you in future so that when you eventually get your consultation you'll be in a stronger position.

Good luck, and hang in there x

[jhellier in reply to Chrissie66]

hi chrissie and thanks so much, i know i said im not in any pain but thats just today i have been in absolute agony constantly for the last 3 weeks, today im not sure what has happened which is why im feeling healthy enough to go out and try and do something about it. pain killers did not touch it, i used hot water bottles to the point where ive burnt myself just so i can ease the pain even slightly.i know that not having pain will not last long. and it is considerably worse sonce i last had it checked. i cannot handle it anymore.im at a point where i want all my lady bits taken away, but as i understand it, you still get symtoms and pain even then. there is no winning with this, its a curse.it is only the last few days that i have come to understand it, i was slightly naive before thinking that i will be better and actually have a life. i dont see any way how i can be better, have an op or not, im stuck with it and i will always be in agony. how can we accept that. i know its life but come on!

[Chrissie66]

I know It's miserable. And I totally understand why you're at the end of your tether. I burst into tears in my GP's surgery last week because I'd just had enough.

What have you been taking for the pain? Because even if you can't get to see a consultant yet, your GP (when you're eventually registered) should be able to give you something strong enough to at least take the edge off it until you see a consultant.

C x

[jhellier in reply to Chrissie66]

well they gave me tramadol but it makes me violently sick! i will be asking for something different as im terrified to take it.its so hard, do you feel like your going through it alone, am i blowing it all out of proportion or am i right to feel this way? you have been such a great help, its refreshing being able to talk to someone that understads.x

[Chrissie66]

You're not blowing it out of proportion at all. And I'm sorry if I sounded harsh in my original reply. I just see so many ladies demanding op after op, and none of them seem to realise that they can be doing themselves more harm than good. I think the problem is that people are so used to getting instant answers in this day and age, but the sad fact is that not only is there not a cure for endo yet, but also the disease has a mind of its own, and it will do whatever it bloody well wants to and there's not an awful lot that anybody can do about it.

However, that doesn't mean that we should put up and shut up. There are loads of different painkillers out there that they can try you on, and it probably will be trial and error until they find one that suits you. I take Tramadol on a daily basis, and pethidine around period and ovulation times.

How is your partner with all of this? x

[jhellier in reply to Chrissie66]

well, my ex husband wasnt supportive at all he wanted me to put up and shut up and a gyno once said to have a child now or struggle in the future and hysterectomy was an option, she was clearly giving me misinformation but at the time i took it as word and he was prepared to seee me go through a hysto and menopause because he wasnt ready, suffice to say he is my ex! my new partner, well not new but none the less is very supportive of everything, as the pain over the last few weeks has been more intese thn ever before, doing the research and talking to other women i have told him and he is super supportive and i think he feels helpless as its one thing he cant protect me from, he's a knight in shining armour.i feel so bad that he has to go through this now, i knew i had it years ago, but finally got diagnosed oct 2010, had op then coil jan 11.i hadnt learnt a hell of a lot about it didnt realise it was this bad, so im in shock i think.i so hope it doesnt hurt my chances of becoming a mum in the future. we are not ready for kids, im 27 it is young i know, i did want loads of children but as were not ready and wont be having them for a long time im afraid that ill be in my 30's finally ready but the endo has gotten worse and the age fsctor makes it more difficult, obviously i should think if today and not tomorrow and take each day as it comes. im also finding it hard to take it easy, i have goals and in my familly we were taught failure is not an option and to let agony get in the way is defeat, sounds harsh but i beat myself up because i feel like im weak and giving in. Sorry about the essay and life story, its so nice to have support from someone who also suffers.i cant thank you enough. You did sound harsh but i know exactly where you were coming from and you have helped me so much today.x

[Chrissie66 in reply to jhellier]

I'm glad you've got a supportive partner now. You story sounds so much like mine. I was diagnosed when I was 26 and told that I should get pregnant immediately because if I didn't, I never would. I was absolutely devastated because all I had ever wanted was to be a mum, but like you, we were just not ready for it right then. My husband at the time said "Well, think of all of the expensive holidays we'll be able to go on!" and I just wanted to hit him. And when over the next few years we didn't get pregnant, he assumed it must be my fault and didn't bother going for any tests himself.

Imagine my surprise therefore when that marriage ended, and I moved in with my current husband, and found myself pregnant within a month....

I had stage 4 (really bad!) endo, and it shouldn't have been possible. In a horrible twist of fate, I had another problem, completely unrelated to the endo, that caused recurrent miscarriage and we never did have a baby, but between 1997 and 2008, even with an ovary removed in 2002, I fell pregnant 18 times....

Have you ever seen the book Endometriosis For Dummies? Look for it on Amazon. As well as being an absolutely brilliant book about all things endo, there's a section in there especially for family and friends that explains really clearly what you're going through, and how it really is not just bad period pains. Even after all these years when I've had so many surgeries and hormone treatments and God knows what else so I know the disease pretty much inside out and backwards, I still go to that book from time to time. It's like having a constant friend there the whole time, I really do recommend it x

[jhellier]

oh my gosh we are alike! did you ever manage to have a baby? Im so sorry for all the difficulties that you have had. men are idiots arent they , so selfish but we get a knight along the way! They certainly are a rare breed! i will be buying that book most definatly. How are you finding it now and how has your husband taken it all?it must have been hard on him also?

x