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Endometriosis UK
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Negative endo diagnosis

Hi everyone

I had my first lap yesterday having shown several symptoms of endo over the years, including a family history of endo. An endo specialist performed the lap, but he didnt find any endo. This result completely took me by surprise having shown so many severe symptoms. I’ve got a follow up next month but I was just wondering whether anyone else has been through this. Did the docs carry on investigating and find another cause for the pain?

Thanks in advance

Michelle x

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I've just had this had the same symptoms and family history, they're making me go back to the gp to investigate other things but want to see me again in a few years if my symptoms persist xx

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Can I ask how old you are?

I had planned on going back on the pill post lap as I know that stops my symptoms, but didn’t want to mask a problem by doing so. So now I don’t know what to do.

Hope you manage to find some answers with your GP!x

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I'm 18 almost 19, no contraception works for me so right now I'm hoping for a miracle! Hope you get some answers too! X

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Hi, if you don’t mind me asking, what other things are they investigating?

I’ve been told the same thing but I have daily pain and have for months so was hoping the lap would give me answers. The GP is being totally useless and I have realised I need to go in there and suggest things if I want anything to be investigated further

Thanks xx

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Only had my lap Monday and I'm not seeing my GP till next week but I'll let you know as soon as I know, my gp is very good and open to all sorts of investigations luckily! x

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Hi

Yes i have had endo symtoms for years but just got through it with various pills and painkillers but over last 3 years they become unbearable until easter weekend i fainted through pain and ended up in hosp. Got tested for gallbladder and kidney indection everything, had ct scan and xray and colonoscopy but nothing then the said we think it gynae related ( which i had been telling them for 48 hours i was there) but they didnt think u could b in that much pain with it...

Sent me home and within 6 weeks had my lap and it was with a surgeon who specialises in endo but she found nothing at all apart from my blood to thick so was put on tranexamic acid..

Which has helped but i was still in daily pain in side ( left lower) now it was all time not just period, so doctor sent me to a phyiso womens health and she did a internal

And my pelvic floor was so tight and inflammed she could hardly do one...

therefore she believes it was my pelvic floor that had gone that day i was in pain nothing else as it can truley horrendous pain i was told.

I have had 3 sessions and they worked unfortunately i have had flare up this week which has put me back in pain but i am seeing her tonight so were see if she can help. I also see a good chiro that deal with while body and he is working on all that area so it releases my muscles.

So basically what im getting at( after a whole massive story) is that sometimes it not endo, alot of other things can give u endo pain.... even ibs can as it all in the same area.. which was another thing i found out i was gluten intolerant so that wasnt helping pain either

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Thanks for your response!

Sounds like you’ve certainly been through the mill.

I’m 99% sure it’s not IBS... my diets fairly consistent and my pain at the moment is directly linked to ovulation & period timings. But I will see what the gynae has to say for the next steps. It’s a relief in one way that it’s not endo, but frustrating to not have any answers at all!x

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Hi, i have pain mainly around peripd and ovulation coz my bowel is stuck to my uterus. I was lucky i got my endo diagnosis in less than a yr from reporting major symptoms, i had a large cyst, a great gp and a gen gynea that had an interest in endo.

If i hadnt had the cyst i could see my being fobbed off with its ibs take buscopan and go away. It could be adeno, which may also explain the symptoms x

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Thanks for your response. I also had a cyst in the first scan I had, after which I had severe pain. In my second scan it had gone so I think it may have ruptured when I had the bad pain.

Just so confused as every do I have seen have been convinced it was endo, to the point where I wasn’t tested for anything else first. I will look into adeno some more to see whether that could be a possibility for them to explore

Thanks again xx

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I had my first lap on Tuesday and they didn’t find any endo. It was a general gynaecologist that performed my lap so I don’t know if that makes a difference. I have almost every symptom on the endo UK website and mine are quite severe. The pain is so bad at the moment that I have been unable to work for a couple of months and the gynaecologist said I don’t even get a follow up appointment and to go back to my GP IF my pain continues!

I went back to the doctors yesterday and they’re telling me that sometimes they never find a reason for this pain. I wasn’t in the right place to argue it yesterday (feeling very tearful and just so shocked we are no closer to finding out what is wrong with me) and only went down because I was told to by the hospital as I was bleeding heavily and struggling to go for a wee

He told me to have a hot bath and use a hot water bottle for the pain when the day unit told me not to have a bath until the glue comes off and only shower after 48 hours and it hadn’t been that long. And you’re told not to use a hot water bottle on your wounds as that will cause bruising etc as it’s so soon after the operation

It’s such a weird feeling isn’t it? Because obviously we don’t want to have it but at the same time we need to know what is causing us to have these symptoms. Before my lap the gynaecologist was pretty much convinced I had it

It’s good that you have some time to think before your follow up and make sure you ask the questions you need answers to. Hope you get to the bottom of your pain xx

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I’m sorry to hear you’re going through all of this.

It’s very bittersweet isn’t it. So weird feeling ‘disappointed’ that you haven’t got something... just because of how much unknown it’s just opened up. Like you, every doc was convinced it was endo and the diagnostic lap was just going to confirm that.

I hope you get the answers you need too. I’d be interested to hear what other paths they suggest for you next

Wishing you all the best x

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Yeah it really is so frustrating! It’s bad that the docs are convinced and don’t look at other options because it’s such an ‘obvious case’ but then it’s clearly not if no endo is found

Thank you, I will let you know what they suggest but I think if i want anything doing I’m going to have to be the one suggesting things!

All the best to you too!xx

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It so upsetting as u think when ur gp is 100% sure it is and u go through all these test and it not ur like “ oh ok now what”as they just wash there hands of you but your still in pain?

In a way i suppose ur meant to be happy u havent got it and considering alot of the poor ladies on here that do and it stuck to there bowel or worse and they have to have extensive surgery i am happy to a extent but then why am i constantly in pain in side of pelvis and why do my periods nearly kill me each month?

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Hi this happened to me at my first Lap... It was negative and it was so upsetting for me as I had all the symptoms and had so much pain... 6 months later I went to a different consultant who performed another Lap and he found endometriosis in a few places. If your symptoms persist I would get a second opinion xxx best of luck

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Thanks very much for your reply.

I’m in two minds now whether to go back on the pill knowing that will end my pain, or keep off it for a while longer to see whether it does persist and then go back for another opinion. I guess I’ll see what the consultant says when I go back next month before making any decisions

Xx

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I had a very similar situation. I've had symptoms and issues since I was 15/16. It started to become worse in later in my teens. It was a lot more persistent so I was referred onto gynecology and asked to see the consultant who diagnosed my sister.

I had my first laproscopy when I was 21 and they didn't find any endometriosis. They did find a small lump but it was too small to be examined. I was advised to go onto the pill as a precaution.

The pains continued ev2n on the pill but we're more manageable than not being on it. My issues escalated a couple of years back and I ended up being booked in for my second laproscopy in September 2016 and it was then that they finally found endometriosis.

It can be a hard one to diagnose as it could be microscopic. Unfortunately it does mean waiting a year+ to have another laproscopy.

Have you had any bowel or bladder investigations done?

X

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Thanks for taking the time to reply! Glad you finally managed to get diagnosed and have some answers.

I haven’t had any other investigations at all as all docs to date had been so convinced it’d be an endo outcome, and generally speaking I don’t have bowel / bladder problems other than during period and ovulation. I will just wait and see what he says when I go back for my consultation but it is interesting to hear what other paths people have had investigated so that o know I am asking the right questions!

Xx

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You poor thing I feel for you - did they do a biopsy? I read that sometimes if deposits are small a biopsy can still be positive. I am very new to this though. There obviously must be a reason for your pain so they will have to keep investigating. Do you have someone to go with you to fight your corner? Big hugs

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Thanks for your reply! He was going to do a biopsy, but I’m not sure whether he actually did, I was a bit out of it when I saw him and confused by his contradictory comments. It’s on my list of things to ask when I have a follow up though. Will definitely take someone with me to help listen!!x

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I had my first lap in June. They found scar tissue and adhesions fusing organs together but said it wasn’t endo causing this. I’m now in horrendous daily pain with it even after having the coil fitted at the same time, and gynae are refusing to see me again.

It’s so frustrating but honestly, don’t give up. I think I’ve been at my GP once a week for the past two months nearly trying different things, so be persistent. I’ve heard that if they focus on looking in certain areas and don’t bother about others then they can miss places that aren’t as easy to see. Maybe that’s what has happened with you? x

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Sounds like you’ve had an awful journey. Carry on being persistent until you get an answer. Can you go for a second opinion with a different gynae?

My consultant specialises in endo so I am hoping he covered all bases, but it will certainly be something that I will ask when I next see him. Cx

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I’m going to try and get a second opinion, let’s hope that won’t take too long to come through!

It’s good you’ve managed to get a specialist consultant, it might make it a bit easier to talk about as he’ll know how tricky it can be sometimes.

Even if he does completely rule out endo, don’t give up on making sure you get further investigation for your pain and other symptoms though. The amount of doctors who seem to think “sometimes women just get pain that we can’t explain” is a satisfactory final answer is ridiculous! x

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bsge.org.uk/ec-BSGE-accredi...

I got sent this from endo helpline, maybe try a second opinion at an endo specialist?

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Thanks for the link. My consultant specialises in endo, and trains other gynaecologists how to diagnose it, so I’m not sure I’d get any different result from another endo specialist. It’s just so frustrating not having any answers!xx

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Hi, I'm 22 and gave had endo symptoms since I was 10 years old. Last year had a lap but didn't find anything. They put in a marina coil to stop bleeding but 1 year and 8 months later I still bleed and pains are worse and more frequent than ever before. All they are saying it can be is endo...13 years and still no answers for me!

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I hope you find some answers soon! I can imagine the frustration you are going through xx

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I know how you feel completely, April 2017 I had a general gynaecologist preform a laparoscopy which no endometriosis was found. Since then I have been trying to get my gp to push for other investigations but they aren’t pushing anything but pain management. I wouldn’t need pain management if they found a cause to my pain!

I then had loads of questions I wanted answering as I found out the laparoscopy I had was a waste of time due to it being preformed incorrectly. So now paying private and am under investigation by a endometriosis specialist and having a laparoscopy this Friday.

So don’t give up, you are in pain for a reason. Make sure your questions are answered as it’s the only way to have piece of mind.

If this laparoscopy rules out endometriosis I am pushing to get all the nerves and Veins checked in my pelvis as they can also have similar symptoms. Good luck x

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Hope everything goes well with your second lap on fri! Keep us posted whether you have a different outcome!!xx

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I have been diagnosed with endometriosis today!!

It is worse on the left had side spreading to my bowel and ligaments. Which makes sense as I can’t straighten my left leg due to a pulling sensation. My right had side no significant endometriosis was found but was told it could just be mild and starting at the side.

So don’t give up ladies!! April 2017 my laparoscopy with the nhs I was told I was just constipated and the pain was in my head! 8 months later I have finally know the cause of my pain.

Good luck to you all! I still have a long way to go but it’s given me some more fight now diagnosed x

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