Today my best friend of five years turned around and told me that she spoke to her mum, who is a nurse in the ICU, and they both think I've been misdiagnosed. They said that people with endo aren't in pain unless they're actually bleeding and the amount of pain killers I'm on I shouldn't have bowel movements. They said that I should get a second opinion before I go ahead with my lap and I should change doctors.
She's also said that I'm nowhere near chronically ill because I still manage to go see my boyfriend a lot, even though all I do there is lay and sleep in his bed mostly, and that I have a high chance of having children so I should stop being so dramatic.
I'm fairly confident that I have endo, doctors and gyno have told me that I do and I have medical records of trying to get a proper diagnosis since I was 13.
I think because the pain has hit me so hard like she's never witnessed before, she thinks I'm just being over dramatic.
How do I explain that she needs to just shut up and be supportive? I just want to throw something at her right now for her ignorance.
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a lot of people can be ignorant, especially friends and family. I went through a lot of abdominal pain in my teenager years and my mother brushed it off. It wasn't until after my first child they realised that it was endometriosis. And it comes in all different forms of pain. There are people who have tons of endo embedded across their bladder, uterus, etc. and barely feel any pain. There are others who have it on one side and experience excruciating pain (me being on of them). I was at the point where I could do no longer have sex with my husband.
I would tell your friend to do more research, review some forums, etc. She and her mother are wrong.
Oh my god I'm so mad!
Endometriosis does hurt when your not bleeding in severe cases and doctors in most cases don't know anything. Even Gynacologist's.
Ask her this: do tumours still hurt when a person is on chemo? Do they still cause symptoms?
She's going to say yes (if she isn't a complete idiot) chemo like hormones manages cancer but it doesn't make it go away in most cases. Endometriosis isn't going to leave because your on a pill it will only go away if you have surgery and they can excise it all.
The fact that your in pain should be enough, all cases are different, not all meds make people constipated that's why it's called a 'side effect' b/c it doesn't effect everyone the same way.
Since all cases are different not all people are infertile b/c not all endo blocks tubes.
You havent got to explain anything to anyone, everyones endo is different. Ive spent years being told there is nothing wrong with me, its in my head, im making it up, im a drama queen and so on. I had a lap and endo removal on friday also diagnosed with Adenomyosis and all the people that said i was making it up havent been anywhere near.
Its something only someone that has suffered with can understand. People find it difficult to understand how you can be in pain every day and still carry on as normal, we just get used to the pain and learn to live with it in our own way. Dont let anyone doubt you or make you not go through with your laparoscopy it is the only way to get 100% diagnosis.
I do anything to not have suffered with this for the last 20 plus years and i know people that have suffered worse than i have. You have to do whats best for you and not your friend.
i can totally understand , do you really need to convince these people around you? oh god we are dealing with so much pain in day to day life and i would not wish this upon even on my worst enemy ;-/ yeh people are just ignorant..agree with tiffanyvd87, they can google it and see the side effects of having endometriosis...
Sorry you feel like this as I know how Endo can make you feel alone anyway and now to have someone say these things to you, although I think she is saying it from a place of Love as she wants you to get a second opinion, it still hurts. Do you have an endo support group in your area? If you do could you take your friend along to one of the meetings as I found that was a big help for me to understand this isn't all in my head and I am not the only one that feels like this.
Please dont let your friends comments upset you this is NOT in your head.
Neither your friend nor her mother know anything about endo. They're wrong. And you do need the lap as it's he only way of getting a certain diagnosis, plus there is the opportunity to treat it at the same time. It does prevent pregnancy which is not a small thing. Between that and the pain you are not being dramatic. Just do what you need to do for yourself and don't let people get to you with uninformed opinions.
Some people have no clue what it's like to have endo why don't u just tell them to look it up if they don't believe u don't sound like much of friends to be honest Iv lived with endo for 8 years and in that time have ended up with two laps to treat it there is no cure for endo and I find every day a constant struggle with the pain I'm in with it and even hard looking after a toddler I'm grateful for the days I have that are pain free but not many days are like that have u been dignosed with endo or still waiting to be dignosed if u haven't I would push for a dignosis cause endo can also make it hard for u to get pregnant to xx
I hate this feeling of feeling like I'm lying. So many people give me this same opinion. It is so hard for someone who doesn't have it to understand it though, especially as the pain you can't physically see. Endo is so different for everyone. There is a leaflet on the Endo U.K. Charity website that does explain it all. Maybe pass that on to her. Even doctors sometimes are not very understanding with Endo. Keep your head up and think of yourself. Do your own research and show that you can back yourself up. I have just read an amazing book by Wendy K Laidlaw called heal endometriosis naturally.. please read this before you consider surgery. I had my 2nd op 6 months ago and feel it has only made it worse! Hope this helps xxxx
Yeah I understand babe. I lknow its hard to do ( and I would have it going round and round in my head too ) but ignore her and her nurse mum. Endo and adhesions and cysts and all the rest of it can hit anytime not just period time. I in fact seemed to actually get some relief when my period came. I'm 10 - 15 years down this road. Ive just had a hysterectomy - keyhole so its ok just like a lap scar really. It seems to go hand in hand with this endo ride what make sit worse is the lack of understanding from the misinformed or down right ignorant - and that unfortunately includes some in the medical profession. The anger I feel is half from the pain and half from the misunderstandings and lack of treatments out there. Fortunatley things are a bit better now so the younger ones hopefully will get better treatments and diagnosed more quickly. Also if you work try get them to send you to occ health to see if they can put u under equalities act - its is a kind of protection I wish I knew I had it years ago when I had a manager telling me her 9 year old could do better ( following a few absences here and there ) good luck with your treatment /s diagnosis this doesn't hav eto be a life sentence with the right management you can almost forget you have it - hugs xx
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Endo pains always feels like it’s ‘in’ my legs?!
Feel like giving up :(
Anyone else feel like this? Please help x
Do my symptoms sound like endometriosis please?
