Pre diagnosis I had friends doubt me, saying how I couldn’t be in that much pain how I was lying about not been able to have sex and there must be issues in my relationship.
Fast forward 6 months I was diagnosed with stage 4 endometriosis and adomyosis. I previously was diagnosed with a chronic bladder infection but my friend also said I was making that up.. even though I saw a specialist down Harley street for it.
So basically I have 3 things going on in my pelvis to make it feel on fire. I’m in some kind of pain everyday.
The friend who doubted me and who most likely was slightly toxic for me and my mental health has now gone quiet that now everything has come to the surface and I haven’t had a sorry but I doubt I’ll get one anyway.
Noticed friends who spoke to me a lot you become out of sight out of mind when it comes to an operation recovery and I think people get sick of you being unwell. It makes my mental health pretty terrible and I feel in a dark place a lot of the time. I honestly think I’ve made better friends on here and on the internet when it comes to understanding of all of this.....
It’s funny how they are all there when you are up for doing things...
I really need to meet up with fellow endometriosis suffers and chronic girls soon before my head explodes with the feeling like I’m going mad
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Kate345
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So sorry Kate. It sounds like you have had it rough with friends not being good friends making you feel bad about being sick. I have had one friend do that to me and yes I do think people get sick of hearing about you being sick. You end up lying about it saying you are fine when you are not. And not opening up about how you are feeling. This place is awesome as we can all support and rant when we need to and know that we are understood fully. I am sorry your friends have made you feel bad.
I think this friend is toxic for me anyway a lot of guilt tripping and making me feel bad.. but to say someone is making up an illness is so extreme I started to believe that I was going crazy. Then I was diagnosed with 3 difffent conditions! Now I just feel really fragile. It messes with your mind as you start to believe it too now I’m coming to terms with the fact there is actually something wrong with me but after hearing from drs and friends for so long they there was nothing wrong with me it’s prefty hard to process
I am really sorry to read what you are going through.
I had a very similar situation and will never forget my friend leaving me in the middle of a Kylie concert (please don't judge my taste in music, it was a fun night ). I was constantly vomiting from being on zoladex injections and she was embarrassed by me but one day enough was enough, I knew I needed to find a different group of friends and at first I started attending the online support group as that night had really knocked my confidence with going out of the flat. I then joined my local support group and have never looked back. Don't get me wrong I still have terrible lonely days still but my endo girls have been my rock. I have also found volunteering for the charity as sense of purpose and a part of something.
Hey, I know how you feel atm and I’m so sorry you’re going through this. I struggle to have sex as well but my bf doesn’t live near me so it’s not an issue atm.
I’m still waiting for a diagnosis via lap but I’m always in some kind of pain as well for about 3 weeks in a month. I don’t have many friends anymore as I can’t go out and drink due to fatigue and heartburn plus the pain. And they think I make it up, my parents think the same thing as well.
Your friend is definitely toxic and isn’t a true friend as she would understand and be there for you through bad times and good times.
I’ve met better and more caring people on here and they have helped a lot. It would be nice to meet someone who is going through endo and help each other out xxxx
I don't think people have a context for endo pain, they assume because they have had menstrual cramps they understand. Last time I was ill my brother in law dislocated his knee and they gave him 30/500 cocodamol which made him utterly doped and unable to function but did lift the pain. It shocked everyone when I pointed out that was just my breakfast dose of painkillers before the Tramadol and Naproxen! N.B. I don't get woozy from opiates which is an atypical reaction and Tramadol makes me very energetic which helps me out as I cans till work on them.
Once the family had a frame of reference for the severity of the pain I got a lot more support and sympathy.
She’s definitely not a true friend by any stretch of the imagination, what gives someone the right to say you are making up an illness?! She sounds awful and I’m so sorry for what you are going through. Why would you lie about having pain during sex! I have this symptom too and I’m sure we can all agree we’d rather not have this pain, to say it must be due to other issues in your relationship is absolutely shocking.
I’m 24 and have been dealing with symptoms since I was 16 so I know how tough it can be.
Everyone here is fully supportive and caring and it’s such a nice place to turn to when you need a chat or some help xx
Sorry to hear of what you’ve been going through! It’s a great idea to join a site like this because so many others can relate to your experiences and so you have people to offer you advice My personal advice would be to stay away from such ‘friends’ whom you rightly refer to as ‘toxic’. Friends should be there for you during the good and bad times we all go through in life. Having friends thinking that you would lie about being in pain is terrible and will not help you deal with your symptoms emotionally; it will be a huge hindrance! But at the same time, we have to understand that when others have not experienced circumstances that we have it can be difficult to comprehend or put themselves in your shoes ie how is it possible that “you” can be in pain or sick as much as “you” are? Seek friends who are positive and supportive in times of need, friends who understand that sometimes it’s difficult to go out and socialise cause of pain, friends who come to you and comfort you at home instead of going out. It will be a massive boost to you emotional well-being! Take care!
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). I was constantly vomiting from being on zoladex injections and she was embarrassed by me but one day enough was enough, I knew I needed to find a different group of friends and at first I started attending the online support group as that night had really knocked my confidence with going out of the flat. I then joined my local support group and have never looked back. Don't get me wrong I still have terrible lonely days still but my endo girls have been my rock. I have also found volunteering for the charity as sense of purpose and a part of something. 
Need help in what to expect when going back to the doctors about endo 
Help!! My Gynacologist says she can't help me anymore and is sending me to a special chronic pelvic doctor. 
awaiting laparoscopy and anxious that the surgeon won’t find anything 
I feel alone
