Endometriosis UK
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Does this sound like endo?

Does this sound like endo?

Hey, hope everyone is okay. I’m going for a 5th opinion on Friday to another gynae and I’m hoping he will let me have a lap.

Anyways I’ve wrote down my symptoms and was wondering if you could tell me if you think it’s endo and if you have any of the symptoms.

My ultrasound last year came back clear and my pouch of Douglas was okay but I know endo can be missed on an ultrasound scan. Also my blood test came back clear apart from a slightly raised testosterone level.

An endo specialist felt tenderness in 3 parts of my lower stomach especially around my ovaries and hip area. And he suspects endo.

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To me it does sound like endo, obviously I’m not medical! I have some of those symptoms and my endo is in pod- it never showed up on any scan.

I’ve had my second lap as my endo symptoms returned after my miscarriage, a few medics told me it couldn’t return so quickly- they were wrong because it did and there was even more there this time! Luckily I had a good fertility doctor who took my concerns seriously . My point is you know your own body better than any doctor does, trust your instincts , there will probably be right 😊

I found getting all my referrals via my fertility doctor made the specialists take it more seriously and now I’m being refered to a colorectal specialist by the surgeon because endo was on my rectum and is causing severe symptoms.

I know your referral was sent by a specialist so I think they’ll take notice of what he has suggested- think you’ll find you will get refered for a laparoscopy- that is the only way to diagnose endometriosis.

Good luck for Friday xoxo

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Thank you. It’s so mad how general doctors and gynaes all said I can’t have endo as I’m too young (I’m 18 nearly 19).

I’m not looking forward to having a lap haha as it’s my first ever surgery and the thought of being asleep freaks the hell out of me as I won’t be in control of the situation. But it needs to be done to get answers xx

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I was wondering what symptoms did you have for the endo in POD? Xx

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Loads! When it’s in pod it causes many symptoms 🙄

Gynae symptoms:

Pre period spotting,

Periods which start and stop- my periods range from under a day to seven.

Heavy periods with huge blood clots and lots of flooding,

Severe cramping leading up and period- find myself bed bound because it’s so bad.

Cramping and bleeding between my periods.

Severe pain during pelvic examinations.

Low iron- I’m on 3 ferrous sulphate a day,

Blood in my urine during periods,

Although my cycles are mostly every 28 days when my endo is at its worse they become irregular- and range from 21-30 days.

Bowel symptoms;

Pain and loose and constipated worse at periods,

Faeces sometimes from front end- gross I know 🙈

Blood from my backside when on my period,

Intentional weight loss,

When they do your lap make sure that they check all the organs not just pelvic, because endo doesn’t just grow on pelvic organs, this is how women get misdiagnosed xoxo

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The pain during pelvic examinations is unbearable like the only gynae who was kind was the one at spire. They make me want to cry tbh.

I have a few of them symptoms but my periods are regular which makes me question is it endo or not xxxxx

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You can have regular periods and have endo. Occasionally mine become irregular when it flares up more.

Oh I know I dread pelvic examinations ☹️

Some women get no symptoms but have endo- it’s not always text book xoxo

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Yeah I’m dreading Friday as I’ll probably have to have another one 😫 tend to try and sing a song in my head haha xxx

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Definitely sounds like endo to me - I had regular periods too, and many of your symptoms. Please don't listen to them when they try to dismiss endo when it doesn't show up on a scan - a scan really shouldn't be the diagnostic method. Between my 1st and 2nd laps my GP tried to fob me off saying there's no way it could be my endo returning, because it didn't show up on the scan... turned out that it had increased from stage 1 to stage 4, so had become much, much worse and in lots more areas.

Hope you get all the answers you need and best of luck xx

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Omg I’m so sorry to hear that. One of my fears is that nothing is found on the lap and everyone will think I’m making it up.

But I always have a dull achey feeling my lower stomach xxxxx

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Ah thank you but I'm totally ok now, had it removed in November so feeling lots better!

Honestly nobody will think you're making it up - before I got my diagnosis the Dr was convinced it was IBS and were so reluctant to send me. Even on the day I was so scared that it would all be pointless! But please don't worry - even if it's not endo, at least you will know that for sure and can move on looking into other things it could be, rather than wondering and suffering for longer than you need to.

I also had the pain constantly, regardless of whether I was or wasn't on my period, which also definitely a symptom xx

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Oh poor you.

I had one when I was referred to my gynaecologist by my fertility doctor and why they have to poke where it hurts I don’t Know!!! They needed to establish what needed to be done during surgery- they had already decided a lap but then decided to do other things too.

Maybe with your symptoms they might just decide do the lap and not need to examine you based on what the endo specialist said- fingers crossed.

Don’t worry about anaesthetic it’s not as scary as it sounds- I’ve had 3 surgeries and I’m ok! xoxo

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Yeah once I wake up from surgery, I’ll probably be like why was I so scared haha xxxx

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Iv had 25+ surgeries for different conditions and I see it as a peaceful sleep but the painkillers help 😃 x

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Hey, hope you're Ok?

I have a lot of them symptoms too along with a few others like nerve pain and bleeding from my bottom on my period. Unfortunately nothing was found on my lap but i was very disappointed by my gynaecologist who did it. All I can say is make sure they are a specialist and search all areas not just the basic pelvis x

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Hey I’m okay and yeah I’ll make sure they are endo specialists and check everywhere xx

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Good luck xx, The most endo specific symptoms are the cyclical blood in urine and bowel movements. I would start with them in the conversation. But for those you likely need a cystoscopy and colonoscopy or sigmoidoscopy too. A lap could come back clear and there be endo on the inside of either organ.

The stats and symptom list in this may be of interest

endometriosisaustralia.org/...

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I get all of these symptoms!!!! I have not been physically diagnosed with endo however I’m in the process of investigation of a diagnosis for it xxxx

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Yeah I’m in the process of getting a lap done xx

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How old are you if you don’t mind me asking. I am 17 and have only been giving gynaecology appointments and they haven’t suggested a lap to me xx

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I’m 18. I went to see an endo specialist at spire, it cost me £214 but he was way better than general gynaes on the nhs and was more in detail and suggested the lap. Unfortunately I can’t afford the surgery with him 😫 so had to be put back into the nhs so hoping they will agree with him and give me a lap.

When i was 17 doctors kept throwing contraceptive pills at me that weren’t working and they always say I’m too young to have endo 🙄 xxx

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Omg that’s my situation!! I have been backwards and forwards from the GP for over a year now explaining how much pain I am in and it’s not just my cramps on my period it’s off my period too as well as additional back pain leg pain to the point I can’t get out of bed and I’m missing work an college.

The doctor proceeded to tell it was my periods regulating which is a pile of BS because I know fine well my periods have not always been like this. I was A&E with my pains and they couldn’t do anything as my GP surgery was investigating it ☹️ I was recommended to get the mirena coil which I have gotten and it hasn’t changed a thing. Pretty much that was the only option I was given and I didn’t even like the sound of it.

Contraceptive pills were given to me and changed multiple times as they again thought it was my periods.

I am definitely considering going private to see a specialist but again it’s the surgery cost etc if they were to recommended getting laparoscopy. Everyone I have seen about my pains have said I am too young to have it even though there are young women on here who have been diagnosed xx

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The surgery would of cost me £3000 but he’s referred me to the hospital he used to work out so hopefully there is at least one other endo specialist there.

I refuse to let a general gynae operate on me in case they miss anything as all my pains and stuff is affecting sports career.

It’s definitely hard to be taken seriously and so frustrating. Just keep pushing the gps and going back. One time I went 4 times in a week due to pains xxxxx

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I’m back for a checkup with a gynae on Wednesday morning so hopefully I’m not let down like I was last time I visited 7 months ago.

I just feel like I’m being treated like I’m an idiot or that I’m overreacting xxx

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Yeah I feel the same way, like it’s just all in my head xx

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