I Want It To Stop!!

Hello,

I'm Ami, my birthday is 04/05/93. I'm on the implant - have been since I was 16 - I don't get any bleeding whatsoever. (I started my periods at 11 and they were SO heavy and painful and getting the implant five years later was bliss! Still had pain but nothing compared to before.) I'm not sure what info is relevant.

I've had all the common symptoms of Endo for roughly two years now (shan't list them all as you've all read and experience them hundreds of times). I've been rushed into hospital two or three times with the 'appendicitis' misdiagnosis etc. Docs at the hospital were freaked out when I told them I had shooting pains up and down my right leg. Been told I could have IBS but the woman said there was nothing she could do to diagnose me properly so it was just a 'might'. Been told I had an eptopic pregnancy even though I'm on the implant and the test was negative. I've had the emergency docs out more times than I can count. I've had a stupid amount of blood tests done, I've had an ultrasound (external and internal). I've had a full STI check - nothing. I've been treated for Pelvic Inflammatory Disease (antibiotics) but they said as there was no improvement of my symptoms I didn't have PID. My Mother has a wonky knee cap and I have a lot of pain in my knee's if they're bent for more than a couple of mins. I get a horrible aching in my right shoulder and right side of my neck (sometimes accompanied by shooting pains). I get I have had diclofenac, tramadol, diazepam, codeine etc etc. The only time the pain was almost gone was on morphine in hospital. The pain used to be in just my right side but recently it's started up a bit in my left too. I always have a constant ache which I've just had to learn to live with and then it flairs up real bad sometimes, other times it's just sharp shooting on top of the constant ache. (Right now both sides are quite painful and I've got work in just over an hour.)

I didn't know about Endo until the second time I was in the back of an ambulance and the paramedic was asking me questions and then he had a eureka moment and started talking about Endo and common symptoms etc - his girlfriend had it and I feel so lucky that he was my paramedic that night.

To cut a long story short, my Doctor (who is amazing) is convinced I have Endo and my appointment to see the Gyne is 23rd May - which will have been a fifteen week wait by the time I get there. My Doctor is pretty sure that the Gyne will refer me for a lap and the hospital have told me it will be about a six week wait from referral to op day.

I've been registered to this site for a while now and put off posting as I haven't got a diagnosis and didn't want any of you to think I'm wasting your time.

This is already much longer than I intended so if you've got this far thank-you so much.

I'm just anxious and nervous about it all.

I'm scared of finding out whether or not I've got Endo. I'm scared that I might have it. I'm also scared of if I don't have it, then what the heck is causing me all this awful agony?! I'm also scared of having an op as I don't want to take too much time off work.

I've been a vegetarian all my life. I'm on a low income so I can't eat really good food. I'm worried that I may have made things worse by my diet as I've seen and read things about the Endo diet.

I'm sick of the pain, the moodswings and everything in between. I just want to know what's wrong and I want it to stop!

I'm sorry if anyone feels offended by me posting.

15 Replies

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  • frst thing i have to say to you is you havent offended anyone....we all kind started were you are now...ill tel you a bit bout me im 26 and have been diagnosed with endo since last sept...i saw a few gynae before who told me i have ibs...which i dont show symptoms for....then i went to a new gp who is also a gynae...(jackpot..lol)...he sent me for test....scans dont show endo...so they wud be clear...but becos i had a been egnored for so long i had a dermoid cyst growing around my fallopian tube and ovary...they were destroyed by it and removed...during the op i had multiple edhesions(endo) so from there was diagnosed...i was once told it can take upto 7 years be diagnosed...so now i am in the middle of trying anything to help me...my medication is a big thing...well for me it is ...it keeps me moving..kinda..lol...and as for the endo diet ive not personally looked in to it...but i know a few on here are on it...im sure you have not made your endo worse by wat you eat...but they do say citrus foods can make it mad...so i stay clear just in case.....lol....if theres any other questions just ask....we will all help were we can.......*hugs* xxxxxx

  • Thank-ou for replying! Yeah my Doc sent me for the ultrasound & bloody tests as he said the Gyne wouldn't accept a referral unless certain tests etc had been done to rule out other stuff. My scan showed no cysts. Bloods are all okay. Yeah I heard 8 years is the average time it takes to be diagnosed. Medication for me just got me off my face but didn't help the pain. I'm on a low income so I can't afford prescriptions (I have a few tramadol & diclofenac for emergencies & also a muscle relaxant Methocarbamol from a back injury but I don't take the pills as I don't see the point when they don't help the pain). I need to get the low income prescription cost help form from my Docs as I lost the first one. Thanks for the advice. I love oranges though!

    Is 17-20 young to get Endo?

  • You are born with endo. At least some women are, it then begins to cause problems when you reach puberty and the body starts producing oestrogen and the dormant patches of endo feed off the oestrogen and get to work just as the lining of the uterus bleeds each period so too does the endo as it's the exact same cell just growing in the wrong places.

    Another theory which is quite strong is that endo can be made worse by back flow of menstrual blood up the fallopian tubes and in to spaces between your ovaries and neighbouring organs.

    In all likelyhood it's a bit of both.

    Other than painkillers have you tried anything to stop your periods and see if that gives you much needed relief?

    Birth control pills, nexaplon arm implant, mirena coil in the uterus, etc.

    Getting refered to a gynaecologist is the first step, then next is to have a diagnostic laparoscopy (key hole surgery) and you need to discuss with the surgeon in advance what procedures you want them to undertake in the op if they can.

    Either it can just be a look around

    or you could ask them to remove patches of endo by surgery or by laser.

    or cut back any adhesions (scar tissue) which can glue organs together

    or ask them to put in a mirena coil if you haven't had that yet, during an op is the ideal time to have it installed.

    If it's a really severe case do you want them to open you up with a big hole (laparotomy) to make sure they can actually deal with whatever they have found, if that i easier for the surgeon.

    You need to be thinking about how far you are prepared for the surgeons to go and let them know what you do and don't want them to do.

    For example is you had exams coming up then no point having a big hole this time round as the recovery takes too long, would be unwise.

    If they do find endo, you could find yourself having several ops over many years to kep the disease cut back.

    If the implant is currently working, and you are not having periods then it might be that they don't see any of your endo lesions bleeding and may report that they didn't see anything, which doesn't mean you don't have endo, just that they couldn't see it glaring at them because at the time of the op it wasn't bleeding. It's quite common for that to happen.

    Here's a useful link to an Australian pdf of pelvic problems. Definitely worth a read through

    endometriosis.org.au/images...

  • youcould really do with seeing wat help you can get with prescriptions ...i was always told to keep your tabs topped up...for instance...morning for me...is 300mg gabapentin,3tramadol..one naristerone..and one defamic acid...i have that 3times a day i take more if i need to that day....but im on alot. i have endo and chronic pelvic pain syndrome..my point is maybe regular taking pain killers may help...impatient is right in the medical side...you have to keep your head high and clear ...your at the begining of this...and its hard....youve defo come to the right place...lol..xxx

  • Thank-you Impatient! The link is fab! & everything else you said is very much appreciated.

    So would the Gyne be the person to speak to about my implant (i.e. how much having the implant would affect the outcome of a lap, whether or not to get it out before the op etc)? Because I don't even get spotting on the implant and as soon as it comes out I'm regular again.

    Yeah I was aware that when you go for the op you sign stuff to give consent on what you want them to do etc. How long is the recovery for just the belly button stuff? How long is recovery if they open you up?

    Missee - I've taken a lot of strong pills throughout my teens so my Doctor says I've built up a high resilience. I did used to stay topped up with various pills and combinations, but they just didn't seem to help whatsoever so I gave up because the stupid pain is just a part of me and my life now. From the age of twelve/thirteen I was getting awful headaches which turned into migraine's and constant head pain from fourteen to sixteen and pills never seemed to help much then either. So I guess I've learnt how to adapt and accept pain. I will ask my Doc what he thinks about trying regular pills again if I can get help with the costs. Thanks again! I think I'm ready now for it to be hard, especially if there's lovely people out there like you guys.

  • Hi, yes, definitely mention to your doc about not being able to afford the prescriptions, I did and mine now gives me two lots of everything at a time, Cocodomol, Buscopan, Tramadol, Gabapentin, Diclofenac and Morphine. I then bought a 3 month prescription prepayment (you can do this online). I just managed to scrape together the just under £30 but this is far far cheaper than paying each time when you are on such a lot of pills (I currently take 20 a day),

    Good luck with all you are going through, and remember to speak up and make yourself heard and understood and to not allow yourself to be fobbed off. xxx

  • it's hard to find the right words to say how sorry I am to hear about u pain.

    I wish better .

    About natural remedies which did help me

    Evening primrose oi - really good staff

    no coffee or less tea - caffeine - Drinking coffee a day alters oestrogen levels in women - very bad for endometrios

    Wish U better and God bless !

  • Pls don't think you have offended us, cos you haven't . This group is here to help all of us find some solution to our problems. Since doctors have failed some of us this is the place many of us could actually say what we feel, when we feel it without the fear of being judged. So on behalf of myself and the rest of all endo warriors out there WELCOME! And I pray everything goes well with all of us. Amen

  • Thank-you Amb43, Samovar & Abbs!

    Amb43 - Ta for prescriptions info, I do always make myself heard in any situation haha! At the moment I can't even scrape £7.65 together and the annoying thing is they prefer you to pay for it and then reimburse you - but I am going to try to get the exemption certificate.

    Samovar - Ta for the caffeine info - I'm an insomniac & I've had a melatonin deficiency since birth so some days I rely on caffeine (terrible I know) in an attempt to keep me going as I'm constantly exhausted! (Especially if I've taken temazepam the night before as side effects are drowsiness the next day!) I will speak to my sleep consultant to see if she can suggest anything else.

    Abbs - Ta for the welcome! & Amen!

    Sort of new occurrence for me today.. Around midday I was at work and suddenly had ghastly sharp shooting pains come on. (Almost reduced me to tears but had to hold them back due to being around clients.) They lasted about thirty mins, I took some ibuprophen and paracetamol as that was all I could get my hands on as I was at work. The pains were all across my womb, tubes, ovaries and entire stomach.

    Must dash off for a train for work, thanks again guys!

  • Look-After-Yourself , please. ))

    Coffee is a big deal believe it or not . The reason u could be exhausted ( no energy) Iron-deficiency anemia very common for us with endo . I take iron tablets , after my blood work shown very low iron . My friend even used to pass out , later we found she was severally iron deficient and has endo.

    I used to have those pains u described today , I know its bad ((

    Get better , I wish U better. God Bless ))

  • I do my best.

    Well my iron levels are borderline & I've had loads of iron pills in the past but they didn't even appear to boost my levels as I'm still borderline but my doc says I'm not anemic & being borderline isn't concerning & my sleep doc doesn't think iron levels are to blame either. Thank-you!

  • You sound so busy and exhausted, please take good care of yourself. xx

    PS Glad to hear you stand up for yourself! You go girl!!! Lol xx

  • I am :( These few weeks are just so hectic due to Easter. I do my best.

    Wooooohooooo! Go all of us!

  • thats all you can do with endo...your best..xxxxx

  • thats all you can do with endo...your best..xxxxx

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