hi girls not long discovered I'm always g... - Endometriosis UK

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hi girls not long discovered I'm always going to be like this even after menopause because of the damage endo has done I'm 48 xx

loobyloo69 profile image
7 Replies

Hi girls it's been a long time since I was on here as I've not been good at all. Even though I know I should have been because I badly need your support. I've just resently discovered that I'm always going to be like this even after menopause because of the damage endo has done. Was actually looking forward to the menopause thinking Yes I'll get my life back. But No nothing is going to change.

I was diagnosed when I was 23/24 I'm now 48.

It has cost me not to have a " normal " life.

Not able to have babies.

Not able to do normal everyday things.

Not able to work from I was about rufly 26.

In pain constantly.

On " good " days it's like normal period pain.

On " bad " days I can't get out of bed as the pain is to severe and have to crawl to the toilet.

I can't make any plans to do anything as I don't know how I'm going to be the next day.

I could be good one day and bad the next or 1 2 3 days in a row.

Every symptom you can get for endo I have it.

That's me taking all my medication all it does it take the edge off it. Nothing takes it away.

Any way hope yous are all having a good day. Love Linda 😘 X

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7 Replies

Oh god I'm so sorry to hear that!! I don't think people realise the extent of how bad this condition is 😔 I hope it does get better somehow!! Good luck for the future xx

loobyloo69 profile image
loobyloo69

Thankyou Christina no most people don't actually know the extent of what it can cause. Some folk think awe a wee period pain aye right wish it was lol. Let them try and live with constant pain that can be so severe you can't even walk with it never mind doing anything. Plus all the other symptoms you get with endo because I get them all 😂

Hope your having a good day love Linda 😘

Starry profile image
Starry

So sorry to hear this. I'm 42 X

Have you been seen by a Endo BSGE specialist centre and been referred pain management clinic to get better help with pain relief?

Is it adhesions from past excision surgery that is causing your pain ?

loobyloo69 profile image
loobyloo69 in reply toStarry

Hi Starry there are no specialist centre anywhere near me plus endo gyno there's nothing more they can do for me. Yes to Pain management was back seeing them again about a month ago sat and listened to him he said about a pain management program I said yes that would be good. Was on talking about seeing a physiotherapist again said yes to him about that as well. He then went onto say about about learning to sit walk etc because the way I was doing those was to protect myself against the pain I said yes that's right. He said they again they would learn me how to do it so I was able to start doing everyday things again. I said yes again that would be fantastic. He just kept going on about my back. Was going on and on nothing about my belly or any of that. He then held me leaflets about pain management programs etc then dismissed me.

By then I was absolutely ragging thinking it was another waste of time coming there he was actually not helping me with the endo at all. So I said to him excuse me you are wanting me to these things how am I supposed to actually get out my bed and crawl down the stairs to go to and do these things. He never said a word just sat there with his head down. By then I was nearly crying with dispare I actually started shouting at him asking him what was going to help me get out of bed when I was in agony ( which happens at least 3 times a week ). Told him I wet the bed when like this because I didn't know I needed the toilet be cause the pain was so bad. I actually apologised to him for shouting at him he said it was ok. There was nothing he could do about my stomach. I lifted the paperwork said another waste of time and said to him I really thought you could help me and walked out crying.

Sorry for the big speel

So I won't be going back there ha

Yes it's scar tissue and nerve damage from surgeries and it's to dangerous to do any more surgery because it will cause more damage. So now I'm always going to be like this

Hope your having a good day love Linda 😘

Pesik profile image
Pesik

Hi Linda, I'm 45, I have no babies, I'm infertil because of the endo on my ovaries, got my left ovary removed 6 years ago, now my doctor is telling me to do hysterectomy and right ovary removal due to multiple cysts again, I feel your frustration, I'm trying holistic approach, not sure if it will help. Have you tried endo diet? I feel your pain!

loobyloo69 profile image
loobyloo69

Hi Pesik I'm so sorry about your endo journey * big hugs * hopefully it will help you. My gyno advised against having a hysterectomy as it wouldn't do any good that I'd be going through all that for nothing because it wouldn't help me any.

I really hope the holistic helps you a few years ago I was taught reiki and passed my first one. It helped for a couple of hours after the girls did it on me. But I had to stop going because I was no well all the time ☹️ No I haven't tried the endo diet because there are a lot of things I can't eat.

Hope your having a good day love Linda 😘

Starry profile image
Starry

Well I hope they do put you on the pain program to maybe try acupressure or tens or physio and the like. So sorry you are in such a bad way. X

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