Pain: Hello, i have had endometriosis for... - Endometriosis UK

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weepal167 profile image
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Hello, i have had endometriosis for 13 yrs... 10 years ago i had a laporoscopy, i thought it had taken it away. But 3 yrs ago it came back with a vengence..ive had 2 rounds of the menopause, and am currently on the mirena coil, this is not helping.. i have been to 2 specialists. Last one today, he is sending me for an mri scan as he cant understand why im in such pain, he thinks there maybe something else, that the endometriosis may be inside my womb also. He is sating i may need hysterectomy.

Is there anything else that can be done before that. Im 38 with no children, (not planning on having any).

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weepal167
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Nic27186 profile image
Nic27186

Hello

Sorry to hear that, I know oh too well what it feels like when it comes back to avengance. Currently what's happening to me right now .

I was told that it will always come back

The only thing they told me that stops it is the pill ( or other contraceptives) or pregnancy which is ironic as we have been trying to get pregnant and nothing!! :(

I have dr's this afternoon as to what our next step is as I'm 30 and want children so bad.

I was on the mini pill and that stoped it totally.

Can you not have another lap to see if that would help ? Xx

weepal167 profile image
weepal167 in reply to Nic27186

Hello,I was always on the pill and it never stopped... while i was on the menopause it stopped it but the moods were unbelievable... 1 month angry,1 month sad, 1 month suicidal... im on the coil which os supposed to stop it...nope...the pain is unbearable... yeah once i get mri, i hopefully will only need lap.

Its the waiting time... for this specialist is 18months... private yea within 6wks... i just cannot afford £1500.

I always always wanted children...but because of this i couldnt get pregnant...im now 38 and have just said im too old(i know im not) but...

I just wish there was a quicker solution...

I hope you get sorted asap...

Nic27186 profile image
Nic27186 in reply to weepal167

Oh wow! Was there nothing they could do to help with wanting to get pregnant? X

weepal167 profile image
weepal167

I wanted this all sorted 1st.. then time past and it never happened... relationship ended... but in a better ine now and again just want this ended.. so dont think about being pregnant now.. im a registered childminder so i have loads of wee kids to look after and love... it helps me alot 😊 xo

Shelly92 profile image
Shelly92

weepal167

YES YES YES

You are the boss of what anyone does to your body .

You are right I hate to say but when endo has been exposed to air and fooled around with a bunch of knives it usually comes back .

Nobody knows if it does this because some was missed at the last surgery

Or however it started in the first place the process repeated itself .

I went thru this many years ago when even less was known .

I was lucky enough to have a dr that had hindsight of and honesty of.

He told me removing all organs will not always get rid of pain .

When I heard that it stopped me in my tracks ,,,

You mean I'm going to go thru mutilation of my female organs and STILL have pain ?

He also said that in removing the endo monster it can't all be seen by a doctors eyes and that chances of missing some are very high .

I'm grateful he was honest with me especially being back then few knew .

He asked me what do I want ?

I told him to do all he could to fix things so I can get pregnant if that is not possible do all you can to keep my organs inside me if possible .

He said

I understand your wishes and will go by them

Not many doctors say that

And by calling me at my home on the phone himself

So you know it was long ago

Even back then I had run into a few doctors with no knowledge or care about the female who sat in front of them

That dr by the way did tell me and my husband that a hysterectomy should be considered

But he knew my desires

A doctor twenty five years later said " you went thru all that and managed to keep all your organs ?"

Yes I did

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