Neontiger666

[Neontiger666]

Hello I am new to all of this I am on my own with a severely disabled autistic child and I do not know where to turn.can you please tell me if anything that I am going to say sounds at all familiar.I have ALWAYS had the most HORRENDOUSLY painful periods but about two months ago they got even worse now I HATE to be so graphic it's really not nice is it ? But every time I try to open my bowels I am left LITERALLY with a loo full of sticky blood clots and blood,I also during my period have been using 20 heavy period towels in spaces as frequently as two hourly,but perhaps if you can possibly believe this what is a HUNDRED THOUSAND TIMES WORSE is the CONSTANT leg ache ,both legs from thigh to ankles it's driving me to dispare I do not know what to do at all,it's taken over my life,despite taking pain killers,the strongest you can possibly take ,whilst the edge IS taken off this pain ( only just) it does NOTHING for my aching legs,I feel like throwing the towel in if not for my little girl I WOULD I can not even consider taking part in something that I LOVED SO MUCH and that is taking my dog long walks around the park !!!! I am SCARED SENSLESS of going out during my period in case I have an accident or that there isn't a loo present.can anyone PLEASE PLEASE confirm whether any of this sounds at all familiar,I would deeply appreciate it,I can not sleep and do not have an appetite at all thank you in anticipation Donna

[Cloudyrain]

You need to take this information to your GP and get a gynie referral. Maybe in the meantime you could think about going on the mirena coil or the pill as they can help reduce the pain by stopping your periods.

I have the leg pains you talk about, and heavy bleeding, and horrific pains that wake me up even when taking codeine or tramadol.

As you bleed through super pads like you describe then the doctor can give you tranexamic acid to help the flow reduce, or norethisterone that can be take before you start to help reduce things. Mefanamic acid can also help with pains.

Try and cycle your painkillers, and don't discount the basics like paracetomal and ibuprofen as they can be taken in conjunction with codeine or tramadol. If you time it right you can take something every few hours which keeps the edge off a bit. Also try a wheat bag - it's the only thing I find helps my legs.

Avoid wheat, dairy and caffiene, and don't have any when you are due/bleeding as they aggravate it: trust me, you don't think it works until you try it.

You aren't alone honey, so get to the doctors. Obviously the only way to know for sure is by having a lap, but you often have to push for help I'm afraid x

[Neontiger666]

Darling from the bottom of my heart THANK YOU for your reply,I am NEVER emotional i am a very strong woman ,but your message left me crying and it's so awful to say I know but THANK GOD you have similar symptoms,though I wouldn't wish it on anybody ,I've survived some terrible disasters in my life but this has just knocked the stuffing out of me I am so ANGRY that this awful debilitating illness is RUINING our lives,I only went to my GP once and he told me to "pull myself together,and take more painkillers" as you have mentioned I AM on trauma doll AND codeine but I didn't have a clue about the other remedies,as soon as I received your message I MADE myself go out to boots the chemist I bought everything that you recommended,THANK YOU ,for your advise I am really incredulous about. The diet tips oh dear God do you know I LIVE off yogurt eat pint pots of the stuff ,and I drink AT LEAST 20 cups of tea a day,I had NO IDEA that this would make things worse,I want you to know that I have NEVER been as grateful to hear from someone in my life,I am totally and absolutely GRATEFUL for your message I will NEVER FORGET YOUR KINDNESS

[lillyflower]

Hi I just wanted to say I am suffering constant hip and leg pains and I've noticed my tummy pains are worse when I have bad blood clots so your definitely not alone! I've been taking barroca multi vitamin every day as seems to give me a little more energy, does turn wee bright yellow but vitamin d and zinc is good for depression so may help. I drink a lot of coffee and I have replaced some with caffeine free. So just gradually swap over or you will have headaches if you just stop drinking tea! I haven't done diet but hot soup or hot drinks will help keep heat in tummy a bit like a hotwaterbottle inside! Heat is my main relief I do take codeine when I need to but the leg pain never completely goes.

Other than that I totally agree with cloudy rain go to the doctors and if your is not sympathetic ask to see a different doctor I did last time I went as when I asked for help she just shrugged her shoulders but the other doctor listened. So don't give up pester your doctor and keep strong. You have a lot to deal with alongside this too so I'm not suprised its stressing you out. If your worried about leaking when your out black trousers with a dark long top or cardi would hide anything until you got home or taking a spare pair of trousers out just incase may stop you panicking about it! Good luck and make that doctors appointment. I've found chatting on here helps keep me sane too! X

[Neontiger666]

Thank you SO SO MUCH for your response sweet,I am AMAZED that I now know TWO people that suffer with the leg pain isn't it HORRENDOUS,when I told the Doctor about this he simply said that I had "overworked my leg muscles" how can that be when during my periods I alternate between the loo the bathroom and the bedroom !!!!!!! Once again thank you so so much for your help and advise xxxx

[lillyflower]

Hi your defenitly not alone there are a lot of us that suffer with hip thigh pain and backache which all seems to be related to endo. Mine has been worse since lap so I think its because my nerves have been more irrarated. It has eased a little but am off to docs Wednesday to see if there's any better pain meds I can try as it does get me down. I sometimes limp like a granny when its bad and only ease is a short walk to try and loosen hip joint and hotwatter bottle. There's also a lot of us that have toilet issues too think it all depends where the endo and lessions are, I know I have lession joining to bowl and I suffer with running to toilet sometimes so your not alone and if you go to the doctors then tell them you know the leg pain is from endo from talking to others with same issues x ill let you know if my doc has any helpful advice as yes its horrendous ! I hope your having better day today and if you want to read more type hip pain in search box and read posts you'll soon realise how common this is x

[Neontiger666]

DEAR GOD I AM SO FRIGHTENED !!!!!! WARNING THIS IS QUITE GRAPHIC AND NOT NICE AT ALL I DONT KNOW WHAT TO DO I STUPIDLY DECIDED TO TAKE MY DAUGHTER TO YORK FOR A FEW DAYS USING THE TRAIN SO I OVER DID SHOPPING YESTERDAY AND HAD "NIPPED" TO LEEDS TO DO SHOPPING AS WELL ON RETURN TO YORK STATION I FELT AWFUL AND IF YOU HAVE NEVER BEEN YORK STATION IS VERY BUSY THANK GOD I BOOKED A HOTEL NEXT DOOR TO THE STATION AS WHEN WALKING DOWN THE STAIRS I FELT AS IF MY WHOLE INSIDES HAD JUST FALLEN OUT BLOOD WAS POURING DOWN MY LEGS INTO MY TRAINING SHOES ,THANK GOODNESS I HAD TAKEN lillyflowers ADVISE I HAD ON BLACK TROUSERS SO IF YOU CAN IMAGINE I AM BLEEDING PROFUSELY LEAVING A TRAIL OF BLOOD WITH ALL OF THESE PEOPLE AROUND AND I AM HOLDING THE HAND OF MY SEVERELY AUTISTIC DAUGHTER TRYING TO GET BACK TO MY HOTEL ROOM HOW I MANAGED IT I SHALL NEVER KNOW BUT THIS IS WHERE IT GETS HORRIBLE AND I AM SO SO SORRY I WENT IN TO THE BATHROOM MY TROUSERS WERE LITERALLY STUCK TO MY LEGS WITH BLOOD AND SO HEAVY BUT WHEN I TRIED TO GET TO THE LOO ON PULLING MY UNDERWEAR DOWN WAS MET WITH A SIGHT THAT I SHALL NEVER EVER FORGET THESE WERE NOT THE CLOTS THAT I HAVE BEEN USED TO. ONE OF THEM WAS AS BIG AS MY WHOLE HAND I TRIED TO SHUFFLE TO THE LOO WHEN YET ANOTHER TWO EVEN BIGGER MONSTROSITIES CAME OUT OF ME IT ACTUALLY LOOKED LIKE AN AWFUL POSTMORTEM LAYING ON THE FLOOR WHAT LOOKED LIKE A LIVER IN SIZE AND TWO OTHER HUGE MOUNDS SO I CALLED THE EMERGENCY DOCTOR HE OPENED THE HOTEL DOOR TOOK ONE LOOK IN THE BATHROOM AND SHOUTED I AM CALLING AN AMBULENCE AND HE DISAPPEARED I DIDNT SEE HIM AGAIN 5 MINUTES LATER TWO LOVELY PARAMEDICS CAME INTO THE BATHROOM THE POOR CHAP VISIBLY PALED BUT THE FANTASTIC FEMALE PARAMEDIC SHOWERED ME ETC AND WHEN I SAID I WOULD ABSOLUTELY NOT GO TO HOSPITAL BECAUSE OF MY DAUGHTER SHE UNDERSTOOD JADE AS I HAVE MENTIONED IS SEVERELY AUTISTIC AND DEAF AND DUMB SHE MENTIONED COULD IT BE FIBROIDS I SAID I HONESTLY DO NOT KNOW I SIGNED THE REFUSAL TO GO TO HOSPITAL FORM AND SHE SAID BP AND HEART RATE NORMAL OH AND HOW EMBARASSING SHE PRESSED MY TUMMY TO SEE IF IT WAS HARD IT WASNT BUT IN DOING SO YET MORE CLOTS AND BLOOD CAME OUT ONTO THE PRISTINE WHITE SHEETS .AFTER THEY LEFT I TOOK IT EASY AND HAVE THAT AWFUL LOWER TUMMY ACHE THE DRAINING KIND OF PAIN BUT PROBABLY FOR ME WHAT IS EVEN WORSE THE HOTEL MANAGER ORDERED MY BED TO BE MADE WITH CLEAN SHEETS AND HORROR OF HORRORS I HAVE WOKEN UP TO SOMETHING AKIN TO THE TEXAS CHAIN SAW MASSACRE THERE IS BLOOD EVERYWHERE I JUST NIPPED TO THE LOO AND LOST MORE HUGE CLOT LIKE THINGS SO I AM SAT HERE KNOWING THAT I MUST GO HOME TO SEE A DOCTOR IMMEDIATELY BUT AM SCARED OUT OF MY MIND CONTEMPLATING THE 4 HOUR TRAIN JOURNEY HOME I JUST DONT KNOW WHAT TO DO I DONT UNDERSTAND ANY OF THIS I HAVE ALWAYS BEEN IN GOOD HEALTH CAN SOMEONE LEASE PLEASE ADVISE ME THANK YOU