Endometriosis UK
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Newbie-endometriosis!

Hi! I was told by my GP that I have suspected endometriosis, they originally thought I had cysts on my ovaries..had internal and external scans which came back clear...I've got all the symptoms of endo..My mum and gran had it and some of my female cousins..Lately though..My anxiety has been off the charts..and the tiredness is insane! I'm sleeping about 7-8 hours a night and still getting up feeling like I've had no sleep which isn't good when you've got 8 & 5year old boys! Is this normal? My GP put me on the pill to try and help but it's done nothing really..She's also now put me back on Citlopram to try and help with my anxiety and low mood...But I don't think there helping either!! I feel like I'm going insane!! I'm also off food..I seem to only be able to eat on the evenings..But sometimes I can't eat nothing..I went 13 days a few weeks back without eating! I've got my first hospital appointment on October 16th..I'm hoping to get the ball rolling then!

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Hi Layc sorry to hear your struggling. Has your GP booked you in for a laparoscopy to diagnose endo? I tried numourous contraceptive pills and nothing helped my symptoms. Sometimes they suggest merenia coil which can help. The tiredness is awful and often fatigue is what I struggle with the most. I have two young children so there is little time to rest! I hope you can get to the bottom of your symptoms and pain asap. Take care xx

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Thank you for writting back! Yeah I've got my first consultant app next month to talk about a laparoscopy..Did you have the sickness? I have the pain all day which drags down into my legs and sometimes causes mass cramp pain in my legs..The only thing I don't have is the constant bleeding or spotting! X

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That's good you have your appointment soon 😊. No I don't experience sickness but do get nausea and a lot of bowel/stomach pain symptoms along with pelvic/hip pain going down into my leg..I don't have periods as I have the merenia coil but do get spotting. Symptom can vary so much from person to person. I hope your coping not too bad at the moment. Xx

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Dawn84 hi!

You sound a lot like me, I’ve got the coil too and don’t bleed (some spotting) but have all the period symptoms and similar pain areas as you describe. I’ve also got a lump in my abdominal wall that itches, swells, burns and gives me pain leading up to when I would be due on.

Are you diagnosed?

Xx

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Wow it's like reading my own post 🙈 I had my scan n got diagnosed with polycystic ovary and now awaiting a lapprocapy for the emdemotious. I've also been put on tablets for my mood and fine eating so hard (lost alot of weight) I was also small 2 begin with so not good. Had all my issues since have my son 15months ago and bleeding continuously since. Pain all the time, during and after intercourse has been hell and even with some answers still feels like the journey is just beginning for me xx

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Yeah..and I just wana scream sometimes "When's if guna end!?" I've also lost weight..But my main thing atm is the tiredness...I am literally hanging constantly! Feel like I'm not sleeping when I am! Doesyour pain to through into your back? Cause mines goes into my back and down into my legs..so painful..I'm not bleeding though I'm still having regular 29 day periods..But got everything else! My anxiety is driving me crazy waking me up at 5am everyday for the last 4 days..I really just wana feel normal again!

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Feels like it will never end if I'm honest 🙈 my pain is mainly pelvis/abdominal but I'm sure my back suffers on bad days! I can go from dull ache 2 full blow like contraction pains it's awful! I've been suffering with my bowels more than anything and the pain is more sharp stabbing with is even more unbearable! it's like a waiting game all the time yet day after day of awful pain! I have a nearly 5year old and 15month old so day time I try my best 2 forget it and get on but evening and sometimes during the night it's awful! I feel 4 u on the sleep thing but I've got a sleep condition where I get up and do crazy stuff so just adds 2 it all! Stay positive and just have our fingers crossed that one day in the near future it will get better xx

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I also understand the bowel pain..mine is before..rather than my body telling me I need to go it just give Mee sharp stabbing pains..sometimes I've been on my hands and knees..groaning where it's so bad! I've got a 8 & 5 year old so I understand the ignoring in the day especially with the school run..and I try to put on a brave happy face for them as I don't want it to effect them at all..but sometimes when the pain is so bad..ya just can't help it! And the emotions..one min I'm happy,then I wana sit and ball my eyes out for no reason..and the smallest things can piss me off! (Sorry for the rant lol)

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Yes mine the same instead of normal feeling 2 go it's pain until I go, like u in agony but then sometimes diahreah n others like pushing out an elephant! Once I've gone sharp pain goes but the pain after just throbs for ages! Feel 4 the kids sometimes as really does affect my day 2 day activities! Even looking at support groups! Finding the whole thing so hard and again like u one min happy n can deal with it 2 next crying n can't deal with anything! I'm terrified I'll have the lap and it will be so bad as it's been going on so long they will do hisarectomy or a bag for bowels! I'm all anxiety and just wanna see the gyno n get a date! No need 2 be sorry rant away.... it's nice 2 speak 2 someone actually on my wave length 😃

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Yeah I'm terrified that there going to say I need to have a bag! It's so scary..I've got my first app October 16th and I'm shitting it! I've had/got anxiety issues anyways and this is just making it so much worse..I've had control for a few years and now it's just insane! Same as me with the loo thing..the pain is immense until I go..and the same with the one min it's like trying to give birth the next it's like I've got a bad belly! This has also affected my belly..I'm praying it hasn't gone up into my intestines!! As horrible as this may sound..it's nice to no someone else gets what I'm going through xx

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I'm literally waiting on my appointment now which my referral was coming up 2weeks ago and said anything up to 4weeks so will be chasing it up in the week! I'm so tired which makes life so boring especially when all the energy u do have goes into the kids and even when you do get that sex drive it's awful as painful and now after bleeding pure red for 15months and having the stupid copper coil removed I'm now bleeding brown ever single time after intercourse. Roll on us both getting sorted and be 'interesting' not sure if that's the right word haha but 2 see both our outcomes xx

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Hopefully it all works out for us both!! I am shitting it though...not guna lie lol..I'm finding myself just wanting to sleep all the time..doing the school run is exhausting!

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Hi there, very similar story to yours. Suspected Endo on the bowel. Having an MRI tomorrow and also bricking it about the possibility of a bag.

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Hey! Yeah I get it..There is so much more to this than any doctor or Google will tell you..I've found out more on here in the last 2 days than I ever did about endo! It scares me shitless..But the sickness (dry gagging, also sometimes actually physically sick) not sure if it's down to the endo,anxiety or lack of apitite! And the tiredness..is one of my major things atm..I am exhausted constantly! X

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Hi,

Hope your appointment goes well and you get things moving.

Sorry to hear you’re having such a bad time.

Your nausea could be down to you not eating enough, but I’ve heard other ladies on here experience sickness and nausea as a related symptom.

I’m not diagnosed myself, just in the process.

Take care xx

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Wow the stories are so similar to my own. I was officially diagnosed with Endo in 2015,but my Dr thinks...and I know I've had it for years and years. Going back to probably about 15 years old. I had a 2nd surgery summer of 2017 when then I was also diagnosed with intersisital cystitis. It is a horrible condition of the bladder. Basically ulcers on my bladder.

Over the past 10 years the Endo just got worse and worse. My quality of life declined,I would "lie" to family and friends about not seeing them. I would physically have to drag myself out of bed to get my kids to school and then the rest of the day would be on the couch or in bed with my heating pad. Depression took over big time. I'm not for taking pills so I have never taken medication. My anxiety is very very bad. About alot of things. The tiredness for me is also a big issue. And like you the belly situation in the bathroom non stop. As soon as I wake up,after I eat...all day. I get my period 2xs a month. Although over the past couple months it has only came once. The pain is contraction like pains. Is the best way to describe it. So unbearable. I've also had miscarriages. But I've been blessed with 4 children. They are my drive to keep going. My husband is my rock as well. I'm very lucky that he tries to be understanding and supportive. It has been extremely hard on our marriage. But after being with someone for 18 years ,he has seen what this has done to me. My last step is a hysterectomy which I do not want to do. I also know that you can still be in pain even after. And Endo could grow in other areas of your body. I'm kind of just at a halt of what to do next.

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Omg..your sounds awful..My boyfriend of 14 years is very understanding too..Understands my sudden lack of sex drive, or that I'm in pain all day everyday..Helps me as much as he can..Also tries to keep me calm! I understand your anxiety & Depression believe me..Your not alone in that fact AT ALL!! I have to physically push myself every morning to get my two boys to school..I have no idea how long I've had mine (or even if it is) I have my first app October 16th..10 days after my 30th birthday..even that app has taken months to get..So I no I'm just at the begging of a very long journey! Hope your feeling better..and I'm here to talk whenever! :-) xx

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Thank you! That means a lot. Endo is something that I never talk about with anyone because I get the "oh I know my periods are bad too" comment...ugg it's an everyday thing!! Not once in a while pain! I was 32 when I was officially diagnosed and yes it takes YEARS to diagnose. I cannot tell you the amount of hospital and Dr visit's I've had. And yes it is a lifelong condition. How old are you boys? If you don't mind me asking? My kids are 16,12,10, and 7. 3 girls 1 boy!

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Hey! I no..the pain is all day every day..it wakes me up most mornings! I've just turned 30 (literally on Saturday just gone lol) and my first hospital app is the 16th..I'm waiting for them to fob me off because I've only just started bleeding inbetween periods the last two months..My boys are 8 & 5..My god how do you cope..I go insane with two boys lol xx

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