Endometriosis UK
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Absolute agony

Ahhhh need to moan. How can my lap be clear when I'm on my period and in absolute agony. The stabbing pains and deep ache in my pelvis is causing me so much grief today. I bleed from my bottom when I'm on my period too and it's all so grim. Totally fed up and without any answers for it grrrrrr.

Sorry for moaning, think writing it down to people who understand helps x

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Hi Hun, I had this 3 years ago. Clear of endo but still excruciating pain. I was hospitalised in March with the pain and I’m due my 2nd lap at the end of this month. They can’t/don’t always see it Hun. You know your own body and some surgeons can miss it. I’m lucky that I’m in with a BSGE clinic and surgeon. Don’t give up xxx

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I'm trying to fight on but today it's just got the better of me. Just feel deflated and just so tired.

Really appreciate the message xx

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So sorry your diagnosis isn't useful!!!? Big hugs. Don't give up. What's the next step? I hope you can find something to comfort you even as silly as a cuppa tea with a hot water bottle on your tummy, it's what I'm doing, under a lot of painkillers as well

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Hello, I'm seeking a second opinion with a specialist now and have requested my photos. It's so disheartening feeling like I'm at the beginning again but I know I need to keep going.

Thanks for messaging x

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Well that's something. I really hope the specialist can figure it all out for you. So frustrating not knowing! Stay strong! Let me know how you get on. Crossing my fingers for you xx

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Thank you so much. I have everything crossed too xx

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I am so sorry to hear that Hun! It is good that you let it out! We all do and that’s why we are here for! To moan, to give advice and also to support each other! Can’t really understand have you had your lap already or waiting to get it and you are in agony at the moment? Sorry to ask again just wanted to be sure x

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Had a lap nearly 4 weeks ago and he said my pelvis was clear. He wasn't very good to be honest and rushed out with his coat on at the end and I was unable to ask anything. Doctor has written to him to see what was checked as there's no record of anything and has referred me to a specialist. I've requested photos too. Just annoys me because this is our lives, it's just not fair.

I will keep fighting because I know deep down something has been missed xx

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Oh ok! So you just had the lap 4 weeks ago and the pain hasn’t improved at all?! 🤔 I don’t understand is why nobody came to explain in detail what they did to you and what was found! It is quite devastating to hear this! You need some explanations, I can see that you have been referred to specialist, endo specialist I suppose? If thats the case you have to wait to be seen by the specialist and discuss it further once he/she has your results from this lap. I am really in shock that nothing has been mentioned to you, like for example what stage of endometriosis, where did they find the endo? I had a laparoscopy back in May 2017 and the gynaecologist couldn’t proceed with the treatment because the findings were too severe to continue and he wasn’t an expert on stage 4 endo reason why I was referred to the specialist. After that I had about two different appointments with the specialist and I have had my laparoscopy just last month feeling so much better already, the pain still there from time to time, I did research it and it says that it could take up to two menses for the pain to disappear completely(in most cases) after the laparoscopy. Please see this link it helped me a lot to understand in detail.

centerforendo.com/#home-1.

Also you could ask your GP for voltaren suppositories it helped me a lot more than any other pain killer! I hated tramadol I wouldn’t take it again! It messed up my nervios system. And if you still feel pain try to get this cannabis oil from Holland and Barret it actually helps a lot!

All the best xx

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Thank you. My gynae who did the lap said my pelvis was clear this is what I do not understand. To be honest tho it was all too quick and he rushed off without me being able to ask any questions. When the nurse showed me the photos there weren't any of underneath and I feel he has just looked at the above area. I've spoken to the doctor who has referred me to an endometriosis and pelvic pain specialist now and has written to find out what has been checked as she has no info either. I've requested my photos and I shall go armed with information.

Thank you for taking the time to reply. I'm on numerous painkillers, codeine, naproxen, amitriptyline etc which do take the edge off. I'm also back on the pill after my break from tomorrow and that helps xx

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Don’t ever apologise for needing to get things off your chest. You must be devastated not to have answers for all your suffering 😔 although no one wants endometriosis; at least you could put a name to your cause.

This rectal bleeding in period really sounds like endometriosis on the bowel; I have it. I’ve had two laparoscopys and both times the gynae has left endo implants on my rectum as they can’t touch it; I’ve now been referred to an endometriosis specialist to deal with it.

Do you have a follow up appointment with the surgeon? If not I’d book an appointment with your GP and see what they say; maybe they can get you a second opinion or run bowel investigations.

Before my endometriosis was diagnosed my fertility specialist thought my pain and symptoms were caused by bowel issues. Apparently the two are very similar and impossible to tell apart; it didn’t help I had many bowel problems as well as gynaecological ones 🤦🏼‍♀️made diagnosing very difficult 🤦🏼‍♀️ he did the lap to rule out gynae which it ended up being 😂

Your GO should be able to prescribe you meds to help with pain and symptoms; so at least you feel more comfortable 😊

Trust your gut instincts; you know your body than any DR; pain is not normal and is an indication of something not being ok. Sometimes sadly we have to push the medical profession 🤦🏼‍♀️ xoxo

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Totally agree, I will keep fighting on. Just having a day of really bad pain and feel absoluetly exhausted.

Thanks for messaging xx

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You’re welcome 😊Being in pain just makes you feel depressed. 😔Hope it eases soon 🤗 xoxo

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Thanks, I have an array of pain killers which I've taken and I've been in bed most of the day xx

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I'm sorry to hear that! It's so hard to keep your head up all the time. I'm still recovering after 7 weeks which can be a bit disheartening, and as i'm not back at work yet, getting a bit of cabin-fever! Netflix and Amazon are my new friends.

But honestly, best thing to do is keep a positive mind and remember that you will begin to feel better soon! It can be hard to do, but just find small projects you can work on either from bed or somewhere comfy i.e. writing, reading, design. It helps to keep you motivated.

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Hi...is your consultant a specialist in endo? Where abouts do u live? Can u get referred for a second opinion? This happened to a friend of mine re a very very large fibroid which was missed!! She went to my consultant who had never seen such a large fibroid and had to do a hysterectomy. Please seek a second opinion..you have the same symptoms as i had x

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Went back to the doctors straight away and she has referred me to an endo and pelvic pain specialist. She has also written to ask what had been checked in the lap. I told her quite frankly that I think he has missed it and I actually think she believes me.

I've also sent off for my photographs. I will keep fighting on its just some days the pain gets all too much.

Really appreciate you taking the time to message, it's a little comforting to know that others have had success after such a rubbish time xx

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Oh my god this is fantastic news. I’m so pleased for you. Your GP sounds very supportive and on your side; you deserve this after the terrible time you’ve had 😘xoxo

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Brilliant news very pleased for you and you have an excellent gp. Please keep us informed of your progress and hope you get seen soon. Its awful when you have to fight battles when you're feeling poorly. I had to do the same. Good luck x

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