Endometriosis UK
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Pre diagnosis?

Pre diagnosis?

Hi all, I’m new to the forum! So I’ve got a few questions. I’ve attached a list of symptoms I’ve experienced for 13 years now- I’m 25 and have been going to the GP since I was 12 years old mainly with the pain in the kidney area which used to be so bad I’d lay and cry for hours. My symptoms eased 3 years ago when I fell pregnant with my son, and have remained dormant since as I’ve had another baby straight after. I also ruled it out as I fell pregnant within 6 months of trying with my first and my first cycle with my second. He’s now 3 months old and the symptoms have came back worse than ever. The kidney pains back however the Gp treated me last week for a kidney infection, the antibiotics haven’t worked and the specimen she sent actually came back negative. This has happened dozens of times over the years where I have had signs of a kidney or urine infection but nothing has showed in any samples. I’ve also had a ultrasound of my kidneys which again didn’t show anything. It’s taken me 13 years to pluck up the courage to mention the word endometriosis at my GP appointment, however today I did and left gutted as she could not have listened any less to what I had to say and sent me off with more antibiotics maintaining it is a kidney infection. Was told it “is not Endo as my symptoms would have stopped last week when my period ended” even though I told her I am still bleeding on and off now.

Has anyone else had similar symptoms/experiences? I feel so disheartened and feel like I’ve gone back to my teens when the symptoms ruled my life. I have 2 children under 2 so really don’t want it to drag on and take over my life so I have no energy for them, but I don’t feel like I’m going to get anywhere with investigations as no one will listen.

TIA

P.s. could only attach one side of the list- the other side says pain when urinating, blood in urine, feeling of needing to urinate but unable to, sudden onset of needing to urinate, lower back pain & knee/leg pain.

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Have u seen a gynae? Insist on it. Pain doesn’t go with endo just coz ur period stops it is consistent!

Also alot of ur symptoms could b ibs or food intolerance? The thing is though if it all went when u were pregnant that suggests endo?

As ur hormones change when pregnant.

Im suprised ur dr dismissed this so quickly even i would suggest it is mayb go to ur surgery and say u want to see another dr

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Yeh I’m going to take this week to see if the antibiotics make it any better and book in for next week/week after with a different female go and request referral. Have had hundreds of swabs etc done over the years but always just GUM kind of swabs that have always been negative. Yeh I do suffer with IBS style symptoma too but have wondered about Endo affecting bowel as well as when I’m on my period if I pass wind I feel like I have a knife digging in me. Yeh I was thinking that too.

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Well i didnt have endo i had all the symptoms but it turned out i had a enterocele( a prolapse) which is effecting my psoas muscle which is giving me all the pain.

I got ibs and endo symptoms which is apparently normal with this problem. My prolapse is very high up in the vagina.

So all these years i been suffering and been told it was endo and ibs it prob wasnt although i known for along time i was gluten and dairy intolerant as it was very obvious and since i stopped my ibs symptoms more or less went but i still have such bad muscular problems in groin and vagina especially when due on and on.

It so weird, my physio and gynae were explaining it all related in that area u have one problem around there it very hard to diagnose with laps and colonoscopies and actually getting in there. It a case of elimination.

I also have the bladder and bowel pain when being full or about to pass and apparently that can b sign of psoas being to tight, pelvic floor, ibs or endo on bowel, so it very much WHO KNOWS until they find it....

U have got to have a lap first , eliminate endo. Then u can start working on if it ibs or food intolerances.

Then if none of them help u id find a good womens health physio.

Its taken me a year of pure pain to get to where i am now, i have had every test and op imaginable , i have had hands and things shoved in places i never thought imaginable and now i know what it is....

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Ah no way I’ve never even heard of that! I’ve got a gp apt 20th March but my symptoms have stepped it up a notch today so if it doesn’t calm down tomorrow I’m going to the walk in. Can barely pass urine today and my bladder itself feels swollen plus the side pains getting worse and my lady parts are aching today too :-(. I’m glad you got to the bottom of it, I feel like I’m never going to get anywhere!

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Hi

I have a lot of your symptoms. I used to suffer really badly with urine infections however they stopped (touchwood).

It was Whalen I came off contraception that I had all the symptoms come back very angrily. I was sent for every test before they would do a laparoscopy. I had my laparoscopy and they have confirmed I do have endo.

I would keep pushing. I diagnosed my self basically because they kept saying it might be and I kept saying I think it’s endo. I would still be cautious as many things can have endo symptoms

Good luck xx

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It could b u have a bladder infection. Id go to clinic or 111 if ur in england

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Well the urinating issues don't seem like endo. kidney stones maybe? I'm not a doctor though.

To actually check for endrimetriosis you would need laparoscopy surgery. :( you can't just tell from symptoms. Another idea would be to find an endo specialist and get a sonogram of your ovaries.. This will show chocolate cysts, which are often endo and can cause a lot of pain. Although if you're having babies you probably don't have cysts on your ovaries.

If you've been suffering for that many years though I would look for a specialist. The doctors are missing something.

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Have had a kidney USS done 3 years ago when I had the symptoms then but didn’t show anything, she’s referred for another one to rule it out as there was a large amount of blood in my sample but no proof of infection at all. Going to book in with a different female gp next week (give the antibiotics chance to work in case it does help) as I’ve now been on my period for over a week on and off and was the same last month, and symptoms seem severely heightened.

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I used to have pain when I went to the loo and I'm constantly needing to pee so I would say the urinating issues are endo related 😮

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It’s so much worse today! Absolutely mortified after being out with the kids I got through the door and had sudden onset of needing the toilet but couldn’t get there in time. Gutted at 25 years old I know it’s a stupid thing to be upset over but it just feels so undignified! Plus my bladder literally feels swollen today and I just constantly feel like I need the toilet even when I’ve been

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Have u checked for prolapse a bladder prolapse

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I'm so sorry 😰

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First of all it’s bullshit that u only have pain during your period with endo. I have pain every day and may have half a day it if I’m lucky one full day over a few weeks where I am not in pain. I also am on the pill and still have pain. So that is absolutely crap. Doctors make me so mad. Get another doctor and keep changing doctors until u find one with a brain. And who is willing to help. I know it’s really hard Cos no one wants to listen and u may feel u just want to forget it. But if nothing else having the confirmation of what u have will give u peace even if it doesn’t fix it. No one wants to have endo it’s a nasty disease with no cure. But there is always support you are not alone we r here for u even if it is only with words xx

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Yeh I did think that was the case! She had absolutely no time for me. Considering she thought it was a raging kidney infection she didn’t even check bp/pulse etc! Yeh I’m on the pill atm too so if it is that it’s not helping! I’ve seen around 4 different gp now and not one has suggested it or listened! Instead they just repeated swabs after swabs and urine/stool samples! Yeh that’s all I want a definite is or isn’t that. I know it’s an absolutely awful condition but I would just rather know what I’m dealing with after 13 years of feeling like rubbish! I’ve got an apt on 20th with a dr I got on with so hopefully she will listen. Thank you so much for your help xxxxx

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You described a lot of my symptoms so I know what you are going through 😭 I would definitely push to see a gynae 😮 Also they shouldnt be just giving you antibiotics everytime as you will become immune to them and they could cause even more problems 😮

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It’s horrific isn’t it! It takes over every day. Yeh I’ve got an apt on 20th with a nice gp so I’m taking the list of symptoms I made and pushing for a gynae referral xxxx

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Good luck 🤞🏻🤞🏻🤞🏻 Xxxx

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I am 17 and have been backwards and forwards from the GP practice for over a year now. My family doctor told me the pains I was experiencing was my period settling. This was utter BS as I have had my period since I was 11 and I know the pains I was having were NOT period pains. I asked to see a different doctor and he had basically googled my symptoms and said it could be endo- genius! Not... he sent me for an ultrasound scan and the doctor said he couldn’t find my right ovary. I then went back to the doctors and seen a gynae nurse at the practice who referred me to see a gynaecologist. From there she had told me to try the coil or the depo injection, 8 months on and I am finally getting the coil tomorrow. I had/ still am experiencing the same pains as yourself. I felt it was handy to write a diary of when I get my pains on a daily basis and how strong they were m, I showed my doctor and that’s when they started to do something.

Hope this helps and you get the help you deserve. Good luck xxx

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It’s awful being fobbed off isn’t it! I really hope you find the answer you’ve been looking for too and your coil helps! Yeh I’ve started a diary so hopefully that helps, I have an apt on 20th with a nice gp so hopefully she listens and refers me! Thank you so much xxxxx

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❤️

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