I'm going for a diagnostic laproscopy tomorrow. My family isn't supportive because they think I'm fine and I'm being dramatic. I've had consultations with GPs and specialists to make an informed decision. Done as much research as I can and think a diagnosis will help me understand my condition better.I feel like I'm hanging on an emotional cliff. If I get a diagnosis my family will take me somewhat seriously and if I don't the I told you so remarks will never end. None of them supported me through any of this. None of them sat down to listen to what I'm going through or how I feel.
I'm scared, alone and confused. I hope others have it better and I hope one day I experience everything family should be.
I’m so sorry to hear this, you’re not alone. It’s a shame you can’t pick your family, I’d absolutely pick another.
Personally, I’ve found it’s simply a lack of understanding from those around me. I get a lot of at least you’ll be fixed once you’ve eventually had surgery, even though we know that isn’t the case. When I’m fatigued, haven’t walked the dog or cleaned, it’s like I’m lazy when in reality I don’t have any energy. There’s so much that comes with this shitty disease, a lack of understanding from family/friends/even some professionals makes it all harder.
Wishing you the best of luck for surgery, that in itself can be daunting but they wouldn’t have offered it without you needing the checks. I hope it all goes well and you get the answers you deserve. X
You are not alone that’s what we are all here for! It’s great your GP and consultant have listened. Your consultant obviously thinks that there is a warranted medical need to suggest a laparoscopy. This should be enough for anyone to accept that there is something wrong that needs investigation. How dare anyone suggest your being dramatic. How would they like it if they were draped over the toilet being sick with a horrendous migraine, rocking with pain, and someone said it’s only a headache? Good for you for being strong enough to sort this out by yourself you’re amazing. You’ve got this.
hope all goes well for you darlin, it's awful when you don't have support around procedures like this but you aren't alone and we'll all be cheering for you. i had the same fears before my first lap that it was all in my head but it wasn't; you know your body and you know when you're in pain. got my fingers crossed your family gets their head out their arses and treats you with more respect. sending lots of love x ❤️
So sorry to hear that they're not supportive. Do you have supportive friends? If your family can't validate and respect that you're in pain since professionals have determined a lap is necessary... it would be hard to convince them of anything. Do they think the gyno and specialists are being dramatic too? Even if the lap comes back and says nothing is found, you don't need to tell them that. A little white lie might help if that happens e.g. say they found inflammation. It's so frustrating that you'd have to lie a little to have them believe your pain but that sounds a lot easier mentally than having them dismiss you even more and tell you it was all in your head. Hopefully you have supportive friends and you always have this group xx
Just wanted to say that you're not alone, there are many lovely people on here who can be (virtually) by your side. Good luck with the laparoscopy, I hope it gives you some answers. Also, feel free to DM if you ever need a chat x
Yup, “you can choose your friends, but you can’t choose your family” Lots of responses on here supporting the fact you are not alone.
Endometriosis is very much a condition where it can feel really isolating. I got to the point (even though my parents were supportive in their own way) of actually expecting others NOT to understand and in this way I found I could stop expecting empathy and it became much easier to deal with the minimising and gaslighting that is common with endo.
If you haven’t experienced endo first hand, it’s pretty hard to relate to. You have enough on your plate right now, but maybe after your laparoscopy you could sit down with your family and tell them how you’re feeling and that a little sympathy would go a long way. I’m not surprised you’re scared, alone and confused. These are common emotions and will need processing along your journey.
Hopefully you’ll have a decent medical team. I can see from your profile that you’re 23 or so? I’m going to throw a positive spin on this and tell you that a lot of endo pain can be managed through how we treat our body and mind. Not perfect, not a solution or a promise, but I made some poor decisions to eat and drink the wrong things and my body made me may the price! For years! Making changes to the things we eat can make a vast difference (I’m not saying it’s easy) but for me, went a really long way to my excruciating pain and debilitating fatigue. There are some brilliant websites, blogs and social media pages that are worth a look. Some very good anti inflammatory diets to follow.
Laying in bed at night doubled over with cramps and bleeding through pads is no fun. But there ARE things that can be done for you with the right advice and the right treatment pathway. Don’t give up. I have time for you if you want to message me direct. I’m 53 and like many on here have been through a lot with this condition. So if I can help in any way (only based on my experience of course) I will try and help.
Let us know how you get on tomorrow with your laparoscopy when you feel up to it . Best of luck.
I've had similar, and when I couldn't tolerate Zoladex. I went to a medical herbalist who tailored some herbal tinctures to help me which actually helped far more than any conventional medicines that I'd tried, the main tincture was Vitex Agnus castus this helped me soo much, controlling the hormones reducing heavy periods and pain, the other tinctures worked with the Vitex to reduce bloating and encourage general well being. Vitex is well worth looking into for you, even if no endo. is found, I know what it is like to be in long term pain and having no sympathy both from employers and family, I think its easier for family to think that your dramatizing it rather than to know that their loved one is in so much pain, but that's no good for you. I hope you get the help and care that you need. X
I went to a herbalist a couple months back and was given some tablets and oils. I tried it for two months with no improvement. Instead I found it caused bloating and because of the bloating I couldn't sleep for days. The herbalist said my symptoms sound like endo. I thought after hearing the opinion of a herbalist my family would take me seriously.That wasn't true.
What makes it worse is yesterday I was meant to go in for my lap and later that morning it got cancelled due to staff sickness. My family was so happy when they found out and even said that they hope it gets delayed further and I should just take high dose iron supplements. I'm not even low in iron. I've literally had two blood tests in the past month, so I'd know.
So sorry to read this. Did the herbalist give you a Vitex agnus tincture to try? Its well worth checking this as some herbalists are better than others, good ones aren't easy to find, you could try looking on the U.K.'s herbalists association website - google it as I cant remember what exactly its called and if you can be recommended to one that's good too. Also some tinctures are better than others, I found I was intolerant of the cheaper more readily available ones. Also family attitudes can make endo. worse so take no notice of them- I know its easier said than done, but if you let them control your feelings that means they can make you feel worse, its better to see the situation for what it is and don't let them control you. You know what your body feels like they don't.
That's a shame, it worked so well for me, (thought I did have to try different mixes of tinctures to get it right for me and use a more expensive tincture than is available in shops) maybe you could discuss the make of the tincture because sometimes they are in alcohol sometimes in glycerine (which is no good for me) or the type of alcohol may be a cheap one that irritates the gut, have you checked the herbalist is registered with The National Institute of Medical Herbalists Ltd? If you look up their website and use their Find a Herbalist section to check or find a registered herbalist in your area. It's a rotten disease with little help available from so called specialists, they are usually male and have no idea what the pain is like, and getting any form of help from the NHS now seems like a full time job for the healthy. Try to relax and get plenty of rest, our mood has an effect on endo. too.
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