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Endometriosis UK
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Can u get endo pain when not on a period not even due a period not been diagnosed with it just got bad pelvic pain with needing loo a lot

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Yea u can- depends . I had it daily due to cysts on my ovaries, it varies for everyone x

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I’ve had a ultrasound no cysts and pain is near bladder

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Yes I have pain near enough every day 😞

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Do u wee a lot too what tests u had done and u in any medicine

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I get this also with adenomyosis and I've not been diagnosed with endo x

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Do u have heavy painful periods

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Very heavy and painful adenomyosis have the same symptoms as endometriosis, I have the pain everyday all-day x

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I feel for u I got anxiety cause pain I get offern but not every day makes me wee more and pain is more near bladder

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I get pain in my bladder and when I poo too I got diagnosed with a internal ultrasound I'd ask your doctor to send you for one just say you have the symptoms of endo and adeno if you haven't already they should send you for tests I haven't been tested for endo but I get the pain that bad I've been referred for a hysterectomy so if I have that they will see it then I suppose hope it helps, are you taking pain relief x

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I’ve had pelvic ultrasound found nothing now on the pill see if it helps been on 4weeks still got period not that painful but I get very hormonal

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Did they not try a internal ultrasound with the pelvic one they did that with me, I tried the pill the implant and the coil, the coil intensified the pain, I think it irritated the adenomyosis, I also had polyps which have since been removed it eased the pain for a bit but came back every day after that worse I think you have to ask them for pain relief I had to as I'd tried all the over the counter stuff and didn't work, then they started me on zapain, and I take tramadol for my periods because they are worse then my daily pain, I hope you get sorted quicker than me it's taken over my life and I get teary alot do you have children? Because both these conditions lessen your chances of getting pregnant naturally it's not impossible like in many stories on here tho x

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I had the internal one and yes got my 3 kids so no more they cost too much lol

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Haha I know what you mean I have two so just gone straight for the only cure for adeno a hysterectomy I'm hoping I don't have endo as alot of people still suffer after one ☹️ I feel for them all, I hope your diagnosed soon x

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Daily pain is common in endo cases but not everyone experiences it. I do get daily pain but the scale of it changes too.

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Does it make u wee more and get pain where bladder is

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No it doesn’t make me wee more, maybe you have endo on your bladder? I don’t have it on my bladder but I’ve got some stuck to my right urethra, do u suffer from UTI’s?x

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I get uti symptoms but no infections

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I’d check with your gp. Are u going to have a diagnostic lap? X

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No they haven’t said about that having a scope in bladder see what shows

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Yes is the short answer! I have endometriosis and adenomyosis and have daily pain. Make sure you get a urine test done to rule out bladder infection and try and get either loperamide or lactulose (stop diarrhoea or alleviate constipation whichever the issue is). Get on the pill if you aren't, see if you can get some ibs meds such as buscopan. Ask your doctor for a referral to a gynaecologist.

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Yes I have pain every day! Due to cysts, inflammation, excess tissue build up, fluid.... the list goes on lol

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Does it make u get pain near bladder and having loose bowels

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Oooohhh yeah!! Every morning loose bowels and I'll get pain in my bladder normally and when I pee (not burning pain though like an ache in my bladder). I have bladder cysts and adhesions so thats why. Super annoying. Also bowel endo causes my loose bowels and irritation.

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Have u ever had a bladder scan or one that goes into bladder

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Bladder scan wouldn't show. I had a cystoscopy (scope into bladder) and they found bladder cysts (Interstitial cystitis) and they found adhesions (bands of scar tissue) on the bladder and from the bladder to uterus through a lapropscopic surgery

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That’s the scan I was on about the bladder one that looks inside I got one booked Wednesday scared shitless (sorry for words)😁 what do u do for the pain would the pill help

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I found the only thing thats helped has been surgically removing the cysts and adhesions! The scope didn't hurt at all :) you'll be out anyway! Don't worry. The gas is a little uncomfortable if you're having that. I was on antibiotics for months because of 'UTI' until they realized it was one. Always negative results same as you. Good luck xx

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I’m havjng the flexibility scope not asleep which I rather be awake for anything if I can so did u have blood in urine when did they realise u had a uti how did they remove your cysts I have had a bladder kidney scan I thought that would show cysts is ic a form of cysts I’m so confused about this I got ic symptoms without burning had consirpation took movical now got loose stools which has made pain worse which makes me anxious did u have the flexibility one

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Do they give you conscious sedation?

I had blood in my urine. I didn't have a UTI.

They removed the cysts with ablation during my laproscopic surgery. Cysts don't often show up on ultrasounds. They show up better on CT but the only way to know for sure is through surgery.

IC is chronic bladder inflammation. It often causes cysts on the inside of your bladder lining which is what I have. I never experienced burning (this is more UTI). IC causes more throbbing/aching pain and pressure with urinating.

I did not have the flexibility one as I was already asleep during my laproscopic surgery when they did the cystoscopy.

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I’m havjng a local they said it’s on Wednesday trying to deal with the pains not knowing what it is is so depressing what helped u with pains till u know what it was do u get heavy periods and pain at that time

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I never had heavy periods and I dont get any now due to my medication. I originally took a lot of advil and tylenol then was prescribed Ketorlac which I take everey 4-6hr. They also gave me tramadol and T3 for when it gets too bad. I've had hydromorphone when it flares up really bad, have a bad cyst or after surgery.

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Did your surgery help what stops your periods sorry for all questions how old are u may I ask and do u get flares up a lot

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I found surgery to be the only thing that really helped a lot. I am going for my next surgery this month to remove more endo and unattach my ovary from my pelvic wall. I was on visanne and am now on Lupron injections. Lupron suppresses your ovarian hormones and puts you in 'menopause' so no more periods. I am 21. I get a bad flare up about once a month and I am usually in the hospital for atleast one weekend every 2-3 months. I was just in the hospital for 3 days in March for my pain and off of work for a week and a half.

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Sorry to hear that u are so young to go through all that have u got any kids how long u had all your symptoms and thanks again for replying to me I don’t really talk to anyone I’ve only got my dad and he lives in Spain I’m in U.K. so really hard for me to go through all this pain on my own helps to talk to someone 😉

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Why didn’t they sort your ovuries out when u had your last op and get rid of all endo that’s what I’m worries to have a lap then it all comes back if I have endo but I just don’t know what mine is

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I know! No kids no. They didn't have my consent to remove my ovary and they wanted to see if my pain could be managed without doing it but not possible. Endo comes back too about 50% of the time unfortunately as well. I started getting symptoms with my first period at 14 but they thought it was PCOs for about 6 years until it got really really bad. Took about 1.5 years from there to get the right diagnosis.

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How long did u try the conception pill for before u realise it don’t work did they not suggest a hysterectomy to u

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Well I started taking it at 14. Then when my symptoms got worse at 19 I went on birth control continuously. It helped for about a year then had to go to a more intensive treatment (visanne and lupron). Hysterectomys do not cure endo. Endo can grow anywhere. I have it on my bladder, intestines, etc so it would not get rid of it. At 21 especially a hysterectomy is never recommended.

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Yea I see what u mean I’m on degogestion pill for a month now had a bleed like period hopefully none next month thought that that pill spose to help with endo what did urologist say what would help for ic I’ve not been giving no tablets yet they say ibuprofen which helps for so long then comes back

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I've never heard of that pill before? Is it a progestin? For me the ketoralac has helped and surgery. Haven't tried anything else. my IC isnt as bad as my endo so I didnt need a further treatment for it. Theres not a lot of treatments though.

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Yes it’s a progesterone only pill just wish had someone to stop the bladder pain

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Just wait until your cystoscopy to see what they say! Your dr cant leave you in pain so just be sure you are firm

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Do U get like uti symptoms I always get tested for uti infection as dipstick shows blood but they send it off comes back negative these pains don’t happen much when on period so I was thinking could it be ic

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What’s fluid buildup u got

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What do you mean?

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Hi, I’m not diagnosed but I do get the worse pains when I’m not on my period. It’s worse just after my periods and minimal during the periods

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That’s the same as me but this week the pain is 2 weeks early it’s like a uti but I haven’t got infection what symptoms u got

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Mine are exactly like you, like a UTI infection. I have had UTIs several times last year but sometimes I get symptoms but there’s no UTI. Always get tested because last year I had symptoms and didn’t think it was a UTI but it was and ended up traveling to my kidneys causing a very painful kidney infection!!

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What tests u had done

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So far, ultrasounds and recently an MRI. Both have been normal but they don’t exclude diagnosis and so I’ll have to consider lap in the near future because I’m too sensitive to hormone pills.

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What u mean u too sensitive for homonane pills yea I haven’t had a lap yet scared to have that one I’m have a bladder scan inside one to see if anything going on there as could be intestinal cystitis

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Basically, I can’t take the combined pill because of migraines but when I take the mini pill I get bad stabbing pains in both legs. I’ve tried a few and don’t seem to tolerate them!? I’m being advised to have the coil but I’m not keen on it

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Yea I was told the coil I’m not kean on that one I’m on the mini pill degogestion one so far been on month and not helping I had a period which was a strange one I get very hormonal can’t stop crying don’t know if it’s the pill or just me how old are u?

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Yes the pill can cause mood changes. It takes around three months for things to settle down but if they don’t then go back to the Dr. I’m 28

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The symptoms I get are pains around the ovaries, pelvic pains.m, nausea, pains travelling down the legs, lower abdominal pains and aches, pains beneath the ribs......so many! I take codeine most days

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U had any scans done I’m not even on a period and I was up last night in so much pain then went toilet got very loose bowels now and pain eased of a bit I’m so worried to what is causing it

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I have that too, loose bowels....i understand your pain!!

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Have you made any dietary changes?

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Not really have u I know when I get this pain I don’t eat much my anxiety gets really bad

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Yes I have and I’ve been better the past three months, can’t say for sure that that’s why but it could be. I no longer drink cows milks because of the oestrogen, I take turmeric tablets daily and eat lots of fruits. Basically, I eat foods that help reduce inflammation and all my sanitary products are organic. I’ve purchase this book but there are many diet advice for Endo online:

amazon.com/Whole-New-You-Tr...

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I have to give it a try what sort foods u eat

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Milk: cashew, almond or hemp milk

Fruits: every morning I have strawberries, raspberries, pineapples, grapes and blueberries. Also mangoes

Eat lots of veg, go organic if you can.

For lunch I had rice with spinach and boils carrots. These are really good for iron especially spinach.

I drink beetroot juice for folic acid.

I take high strength turmeric tablets twice per day, these can be purchased from Holland and Barrett. I also take biotin for hair loss that can be caused by anemia.

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How old are u if u don’t mind me asking

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I’m 28, but I look 15 😂

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Well I don’t know I was due a bleed I’m on today so could that of been what my pain is cause I was due a bleed but I’m on the mini pill for month now should I be bleeding

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It takes up to three months for you the pill to settle into your system and so you may bleed sporadically for some time. After three months you will see exactly what effect the pill will have, speak to your Dr if you have any concerns

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It’s strange I had bad pains for week then I have a bleed this morning and pain has eased a lot not as bad and I can deal with this pain

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