Endometriosis : Hello there I’ve suffered... - Endometriosis UK

Endometriosis UK

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Endometriosis

Gorilla39 profile image
16 Replies

Hello there I’ve suffered with endometriosis since 2010 after so much in and out off hospital and gyne doctors making me feel I was making it up in my head I actually went under surgery to be told I was severe endometriosis and had effected me that I can’t have children 😢 from this day I’m in so much pain that it effects my work/ activities and so much more it’s just nice to see that I’m not alone in this and to see that others in same pain as me and to get support

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Gorilla39 profile image
Gorilla39
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16 Replies
Jsrzb profile image
Jsrzb

That’s awful!! I hope your okay, it’s so bad how they treat you and make you feel like your going mad 😞 I’ve only joined a day ago and I’m so glad I did because I always felt alone with this it’s lovely having a support group

Gorilla39 profile image
Gorilla39 in reply toJsrzb

Yes it’s nice to see other women that are going through the same as me and I know it’s nice to able to talk abt it to others that know wot I’m going through x

Jsrzb profile image
Jsrzb in reply toGorilla39

Does anyone ever feel like there family don’t even understand it my mum n dad say there fed up of me saying I’m always in pain 😩 even my friends don’t understand it x

Pretty_roses profile image
Pretty_roses in reply toJsrzb

Hi Zendox

I feel the same. So I have stopped saying anything. So it does make you feel very lonely as no one understands. Xx

Jsrzb profile image
Jsrzb in reply toPretty_roses

Yeah same it’s so frustrating, sometimes you want to just give them 5 mins of pain to let them know what it’s like 😂xx

Pretty_roses profile image
Pretty_roses in reply toJsrzb

Hahah it really is haha I know exactly where your coming from 🤣 this group is really supportive. 😃 xxx

keepfaith1982 profile image
keepfaith1982 in reply toJsrzb

I feel the same my husband is the only one I can talk too my I expected my sibling to be more supportive but has no interest so i dont bother anymore being on here really helps i dont feel so alone x

Jsrzb profile image
Jsrzb in reply tokeepfaith1982

Yeah I’m the exact same being on here has really helped me I think x

AllthatGlitters profile image
AllthatGlitters

Hi and welcome here 💗no it’s not all in your head, we suffer so much pain and other symptoms too. It effects every part of our lives. Are you on any medication? X

Gorilla39 profile image
Gorilla39 in reply toAllthatGlitters

I’m on morphine as it takes edge off I’ve had so many different medication that I am so immune to it all nothing helps I’m in a lot off pain today and I’ve taken so oropmh but not really touching the sides I don’t know wot to do ? X

AllthatGlitters profile image
AllthatGlitters in reply toGorilla39

So sorry you are going through this. I take tramadol now. It kicks in after an hour. Makes me feel sick and like I am going to vomit. You are on pretty strong stuff as it is. I don’t know what to suggest apart from a TENS machine to help a little and has your GP going to help you further with medication? Xx

Gorilla39 profile image
Gorilla39 in reply toAllthatGlitters

I’ve done with tens machine etc it helps for a bit then nothing just so much going on it’s like the body is to use to it all after so many years ongoing xx

AllthatGlitters profile image
AllthatGlitters in reply toGorilla39

I know what you mean as I now have mine up quite high x

bmarley profile image
bmarley

I know exactly how you feel. It took my doctors 3 years to diagnose me after constant hospital appointments and being told "its only a ovarian cyst it shouldn't be causing pain" When I eventually had my laparoscopy in 2017 (age 26) I was told my endometriosis was also severe and that the possibility of having children would be minimal which of course no woman wants to hear this.

However, I found comfort in a 40 year old woman I worked with who told me she when she was younger she was diagnosed with endometriosis so severe it spread throughout many of her organs. She too was told she would never be able to have children. She fell pregnant not long after her diagnosis and then not long after her telling me her story, she fell pregnant with her second child at age 40!

Don't give up hope! Just because were told these things doesn't mean its going to happen. Keep going and like you said, you are not alone!

😊

Luisajane profile image
Luisajane

I’m so sorry your going through this. I’be been waiting 14 months for a lap. Ended up in hospital yesterday as I couldn’t cope with the pain. They just sent me home with a prescription of Oral morphine. Had to take 20 mls just to cope with pain. Feeling extremely tearful today and worrying what’s wrong with me. This pain has knocked me for six and struggling to even get up today. I’m so scared the pain is going to come back.

Gorilla39 profile image
Gorilla39 in reply toLuisajane

It’s horrid that ur going through this 😢 I’m having a awful time I had surgery two years ago with endometriosis and the surgeon Burnt my uthera where now I have to Catherise for the rest off my life and not got any sensation to when I need to go for a wee to now my left kidney is over working that things are getting worse and we’re just leaving things so late with treatment etc and the months off getting no way and I’m literally giving up to now I’m bleeding again and things flaring up after having internal two weeks ago that I got to go for a MRI. The gyne team have said it could be another surgery to remove the endometriosis but I’m at high risk with wot is ongoing now it’s literally non stop and I’m in so much pain x

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