How to explain endo

Hi

I had a hysterectomy in October last year where they found fibroids endo and adeno. I am struggling to explain it all even to family members. Everyone just thought that having a hysterectomy would solve all my problems. Although a lot of my symptoms have gone I am sure I am starting to get pains again and constantly feel tired and drained. I am pretty sure that my gyno didn't get rid of the endo as he is defo not an endo specialist. How do you explain all of this, I have tried but its hard when I don't fully understand it myself!

13 Replies

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  • Hello .... first of all ..I HEAR you :( i too have fibroids and 'bulky uterus' which is adeno...and i have have 'chocolate' cysts so yep i have the the lot as well....

    In relation to your family whom do you mean mum dad etc or husband kids etc ?

    And you are probably feeling pain again ....

  • Hi lass1970

    Well I suppose my family and friends really. Its really hard to explain it all when I don't understand it myself! I have read loads on the internet. I guess it makes it harder when my gyne said (in font of hubbie) that the only cure for endo is a hysterectomy! So now he thinks that I am cured. I sometimes feel that my pain is all in my head. Its not like I have a lot of pain like some ladies. I know my immune system is low because of it, I have forgotten what its like to feel normal. Thanks for your reply.

  • Hi,

    Maybe you can refer them to this link on the endometriosis UK site... which explains it in very few words...

    endometriosis-uk.org/inform...

  • Hey,

    I don't know if the following will help, but I keep it flagged on my email and show to people who don't understand. I'm rubbish at e plaining things, but found this video helpful as not too graphic but shows enough. Doesn't neccessarily e plain how severe things can be, but helps people understand a bit more about what's going on.

    vimeo.com/m/20910143

    I also liken my endo to weeds! People respond better to something they can relate too. I say my op was like gynae using weed killer, but some weeds are tough and will continue to grow. The weed killer only hits the surface and doesn't always get to the roots and weeds are clever and will grow away from where the weed killer is or grow back harder to resist the weed killer - adhesions!

    I don't know. I've found it tough too. I don't think people will really ever truley understand.

    I also found a really helpful page, i think via endo resolved or endo org which is about how others cope with your news.

    I was shocked at what I read and made me see in a different light about the people who I thought were being useless and not caring were the ones not coping. I'm a nurse and tell people this daily, it's obvious to an extent, but when you are in the situation yourself, drowing in pain nothing is obvious. I will try and find the link now and re-post.

    Hope this helps xxx

  • Hi Lillil.

    Just wanted to say that is a great video. Like you say it doesn't go to deep into things and how severe endo can get, but still covers the basics.

    I also like your analogy of the weeds! That is fab!

  • :) it's nice to help someone back when so many people have helped me.

    Even my boyfriend who had looked into it all in detail found it helpful as he is more of a visual person.

    I just give people my phone whilst its playing and busy myself in another room so it's not too intense.

    Some people are still funny to me about it, but I've come to realise that periods are their own taboo subject and it's not personal to me.

    It will always be a struggle, but good to have tools at the ready! am dreading going back to work, I'm a surgical nurse so everyone will be able to analyse my op to a molecular level! They just won't get what it feels like!

    Not sure how I will deal with that, but we will see!

    Good luckxxx

  • That makes sense. Yeh as soon as the word period is mentioned esp with men there are always uncomfortable looks, or excuses made!

    Good luck with your return to work. I am sure you will be fine. At least they will be able to understand the process you have been through, so that is a step nearer. I hope you get eased back in gently...but knowing work places this hardly ever happens.

    I hope your recovery from the op has been going well.

    xxx

  • Lillil - that was a great video! I think all doctors should recommend this video to women who've been diagnosed with Endo or who are having difficulties in that area. I suffered for so long with my periods and knew the pain was other than normal period cramps. My 20s came and went and now I'm in my late 30s with extensive endo and no children. Had I seen this video or had information at my fingertips in my early 20s, i would have had children in my 20s most definitely. A great video, thank you.

  • Have a look at the blog I have just posted to see if any of it helps. I'm sorry I have no knowledge of adeno or hysterectomy xxx

  • I had somebody tell me it was just bad period pains not long ago, she is very close to me and I was furious! I proceeded to ask if monthly internal bleeding sounds better to her as that's basically what it is.....she then said "oh is that what happens?" *facepalm*

    Ignorance and judgement seem to be something I come up against a lot. If anyone asks me what endo is I usually say this ...

    "It's when the cells that create period blood are found in the body cavity instead of inside the womb where they should be. Then every month they bleed but the blood has nowhere to go so makes scar tissue inside me.....internal bleeding is not fun! And no endo is not just bad period pain!" Shocking people tends to work lol. I like the weed comparison though, gonna use that now lol

    xxxxx

  • I've got an image of someone spraying my insides with weed killer now! Haha!

  • Thanks ladies its most helpful will start looking through the links. Lol sid_ me too xx

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