Where do I go from here?: Hi All, Just... - Endometriosis UK

Endometriosis UK

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Where do I go from here?

xKatie86x profile image
3 Replies

Hi All,

Just joined here today as I was pleased to read posts from other people going through the same thing as me (not pleased for the pain etc but pleased I could talk to people who actually can relate to how I'm feeling.)

Just to give a brief overview:

I noticed a few changes with my body over a couple of years and a mixture of pain and having no joy in conceiving baby number 2 after 12 months resulted in me taking a trip to my GP.

To cut a long story short all of my symptoms pointed to endometriosis and had a laparoscopy done exactly one week ago.

The laparoscopy showed no visible endo but they couldn't have a proper look because my organs are so stuck together and they didn't want to risk doing anything there and then. They do still believe it is endo that has stuck everything together though or there is a slim chance it could be scar tissue from my c-section almost 5 years ago.

One ovary is stuck to my abdominal wall and the other has embedded itself deep under my bowel so I was told. Also the dye test showed that both fallopian tubes are closed.

I was told all of this having just come round from anaestethic and to be honest its all a bit of a blur and I was told I need to come back in three months to discuss further as I will need another operation to try to separate my organs.

However, now a week has passed and I have so many questions that I want to ask and three months just seems like a lifetime. I'm so anxious :(

Just wanted to talk with people who have been in similar positions to this really.

I'm only 27 and can't stomach the thought that this is it - no more children, constant pain and having no control over my emotions whatsoever.

I know im blessed to have the one child and believe me I know that but I guess we all have our own life plans and I have always known I wanted two. I'm trying to keep positive as they haven't told me this is the case but being human I seem to only be able to think about worst case scenario.

Sorry for such a long first post guys! Like I say this is all new to me and I have no clue about any of it and just wanted to hear from others who have had similar experiences to try and alleviate some of this anxiety (plus I feel better for taking some frustration out on my keyboard lol)

All comments appreciated - even those telling me to stop going on :$ lol

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xKatie86x
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wp22 profile image
wp22

I sympathise and understand what you are going through. It sounds as though you got your endo when they done the c-section although doctors would never agree on this one Incase of liability claims etc. we would all be there with one thing or another through their negligence. I too want one more baby and have endo. I have had 4ops and feel a bit better but pains are gradually getting worse as every month goes by and know it's still there on my bladder (stage3-4), doc told me stage 2-3 but I think it is worse than that. I am fed up of useless operations and I count myself one of the lucky ones having excision (3 ops) But this only takes patches of it away leaving small bits behind. Pretty pointless doing ops in my eyes unless you are going to do a 'proper' job. Sorry to hear you want just one more baby and can't because this stupid disease is stopping you. There's nothing worse for a woman than to stop her doing what should come naturally. Heartbreaking. But you are not alone, there is simply millions of us walking around out there made infertile by this crap and it repulses me every single day to know that the so called medical professions care less about this disease than any other and we have to endure it. It ruins lives, when will they listen. X

Impatient profile image
Impatient

You will have surgery to cut back all the adhesions - that will help symptoms- and there may not be endo there at all - adhesions can do a great deal of harm (even though they are meant to be a cushion of protection.

Nor if all hope lost regarding a pregnancy. The uterus is still in good order- the ovaries are still working - you just need assistance getting the egg passed the blockage. And you are still young enough for IVF.

So save save save all you can spare from now on. It might not be now or in 5 years time even - but Assisted reproduction is there as a back op possible solution.

xKatie86x profile image
xKatie86x

Thanks for your response both. It really does help to be able to speak to people who are going through similar things. My discharge notes do say there are severe adhesions on my uterus and until last week I'd never even heard the term adhesions before so I asked the doctor what adhesions are and the answer I got was "they are just adhesions." But like I say this is all new to me so I have no idea what that means. They did say my womb looks normal which is positive. I just don't know what to expect from here and from browsing the forum it looks like the majority don't know what to expect either. As conceiving isn't an option right now would it be worth seeing my GP and maybe going on the pill to try to help in the meantime? The pain in my left ovary is just getting worse and I appear to have PMT constantly and it's becoming unbearable and the thought of waiting another 3 months for help seems impossible right now

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