Endometriosis UK
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Advice please

Hi all

So I haven’t been diagnosed with endometriosis but I think I have it. So exactly a year ago I went into a&e 3 times in a month with the pain it just started out of nowhere. I was sent home with trapped wind on each occasion. This made me feel so stupid and upset I was crippled in pain daily and was being made out as a liar. My gp was unsure what it could be she sent me for an ultra sound scan of which just shown up some cysts but she said it wasnt enough to be in the kind of pain I am in. She prescribed me teamadol of which weren’t even taking off the edge of the pain so she referred me to a Gynaecologist. I waited 3 months for my appointment and to get there for a man to take my consultancy and to tell me he thinks I just need to be on contraception. He never touched me or examined me in anyway just sat and talked to me he said I don’t look like the typical person to have endometriosis it’s probably just ovulation pain! He then said that I just need to go back to my doctor and ask for the injection of comtraception! I never felt so low in my life than someone basically telling me I was being dramatic! I cannot exaplain the pain to anyone it made me not go back to hospital or my gp again I didn’t like the feeling of being made out to be a liar. So I just chose to deal with it for the time being and each month I began to think I was coping then today I was struck again it floored me literally couldn’t stand up was taking my breath. I just don’t know what to do anymore

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I feel your pain. I’ve been to the doctors 3 times and hospital 3 times buckled in pain. All the symptoms of oc but because I am young and look well I always get the same ‘hypocondriac’ and told they can’t do anything and to go away and take pain killers. It’s a nightmare and mentally draining. I would say be persistent. It’s your health in the end. Best of luck xx

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Yeah I’m the exact same! I’m 25 and don’t look like the typical person to have endo aparently! it’s just upsetting how they make you feel like a liar and as if your making it all up like I want to have it! X

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Hi Ejhall,

I just wanted to say that I was also taken to hospital twice in the same month going back 12 months due to chronic pain and although they haven’t officially diagnosed me with anything, my gynae I was referred to prescribed me the mini pill which apparently isn’t just for contraceptive purposes, it acts also as a pain relief too. ( my consultant explained this to me, she said it works a little like paracetamol for example, you can take it for headache /period pain/ general aches and the pill is a multi-purpose medication too) Although it’s taken a while for my body to adapt to the synthetic hormones, I’ve been pain free since. I thought it was worth mentioning to you incase this hasn’t been explained to you as it was to me. Many doctors in my past have also said to me ‘ it’s just period pain’ it wasn’t, and I knew something wasn’t quite right and something isn’t quite right still but I’m having ongoing investigations.

Maybe try the pill or the injection and see how you go? it’s been an uphill struggle but I feel like I’ve finally got to the top! xx

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I feel your pain hun, pretty much the same with me. Tried every contraceptive pill under the sun and the mirena nothing worked. Went to the specialist and was told there’s nothing wrong and my pain is “psychological”. I’ve been to ED a few times and each time they send me home because there’s “nothing wrong” we seem to get made out as liars but honestly who goes to the hospital for fun? Not me haha. I have a lot of other symptoms, it makes no sense. Bleeding heavy for 27 days straight isn’t a normal period. Imagine if they could all feel the way we do for a day maybe then they’ll understand.

I really hope you find some answers soon, everyone deserves to be pain free and be able to live life normally xx

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I am so sorry to hear that you have been mistreated in that way! It actually infuriates me! You are in your right to sought for medical help and for your questions to be answered! May I ask how long have you been having your pain? When does your pain reaches a level where you can’t cope with it anymore? Is it in your period days more likely to happen? Endometriosis is a complex condition and it is different in every single women but one thing is common the BLOODY PAIN!! so if you are having pain which is stoping you from doing your normal activities then definitely needs to be investigated!!! Unfortunately it can take time before finding out exactly what you have... don’t give up and continue going to your gp! Call them up go to hospital every time you can’t cope with the pain! That’s the only way the doctors will take you serious! Endometriosis is a horrible condition which is often missunderstood and doctors can’t be bothered to meet the patients needs! I had to wait for three years before being diagnosed with endo! Before that I went under different investigations and medications (combine pill, mefenamic acid, mirena coil) but nothing would help the pain I was going through I had different ultrasounds all of them with the same outcome cysts in my ovaries but they were apparently too small to cause such pain! I was going to see the gp every month because the pain is often unbearable during your mesntruation... I had to investigate myself and only when I told my gp crying out loud that I believe I have endometriosis I was referred to the gyne and then waited for another 6 months before having the laparoscopy and of course the diagnose was endometriosis! This happened three years ago and have had since two more laparoscopic procedures, waiting for another one because I have severe endo, unfortunately they can’t fond a cure for this! 😞

So I really hope you can sort your pain and find out what is happening with you!

All the best x

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Hi Ejhall sorry your going through this. I had a similar experience with a gyno. He said my pain was psychological and said the cyst on my ovary was too small and he wouldn't go in to remove it. I stood and argued with him explaining my symptoms. He said you don't want endometriosis. Yes cause thats why we all troop to the doctors and hospital because we want to have a horrible disease. After that appointment I was so down I burst into tears I felt all was lost. He did refer me to a specialist (the only good thing that came from seeing him) and 6 months later I had another scan and an app with the specialist. Who booked me in for a lap there and then. No messing and it was the first time I felt like I was being taken seriously in 7 years. Don't give up it takes perseverance to find that one person who understands. And don't suffer in silence with the pain. Keep going back until you get the help you need x

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What does a ‘typical person with endo’ look like? How ridiculous!! I have also been where you are, many times! It makes me so angry and sad to read that so many of you have too!!! It’s bad enough having to put up with such a horrible dis-ease without having people tell you ‘it’s nothing!’

I’m so sorry you’re going through this. I would keep going back to your gp (a different one maybe) take someone with you, and make sure they do something else! Keep going back again and again until they listen!

Much love xx

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