a lil advice/suuport please x

Hi I am currently on waiting list for lap, am in constant agony, exhausted beyond words (and lots of other symptoms inc pcos) and until i started reading some forums yesterday, had began to believe i was imagining all my pain. I am convinced i have endo, my gran had hysterectomy at 30, my mum had hysto at 49 and they found severe endo while doing that. I have had to start down the route of "absence management meetings" and "occ health" at work. They were v nice and trying to understand and i thought id explained sufficiently until i was asked "do you think it could be your chair doing this?" I have a 6 yr old daughter but had been on microgynon and was on this when i conceived her. I have been trying for over 3 yrs to get pg also but my fear of not being able to have a sibling has been totally overidden by my fear of not being fixed -or more accurately, not being able to find ways of managing my pain. i have had problems for years but the last 6 months things have just plummeted. On top of the awful pains etc, i have this feeling that something is rotting inside me and it makes me feel sick which i know sounds bizarre but it is that strong it is giving me nausea.

I guess would just like some advice from those who have already had confirmed/know what i can expect in the months to come. I am on co-codamol 30/500 but this is no longer working so going to go back to gp to discuss pain med alternatives and see if can speed up laparoscopy,

sorry to ramble but i am just at rock bottom with this and i think the being in limbo doesnt help. also petrified they dont find it on 1st lap as gynae said only find in 50% then people will think i am lying :(

6 Replies

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  • Even if they don't find it doesn't mean you don't have it, and if you have adenomyosis which is roughly speaking endo in the muscle walls of the uterus then tht doesn't show up with a lap at all.

    There's a website for adeno too

    adenomyosisadviceassociatio...

    just in case you want to read through and see if that also ties in with your symptoms. Endo is outside the womb, and is a very similar disease in terms of symptoms, but is still different from endo whcih grows anwhere and everywhere it cares to.

    Have a word with the GP, seeing as you are on the list for a lap op, he might agree to temporary stronger pain killers till the surgery just to tied you over.

    As for speeding up the lap op, sadly the waiting llists are horrendous, and your best hope would be to call the hospital and let the gynae team know that you are prepared to take a short notice cancellation op should any crop up in the mean time, but for that it will be a small number of days notice, and you would need to warn your employer of that and also make arrangements for little one to be looked after for a while perhaps at grandmothers house and forewarn her that mummy might be in hospital a few days and afterwards she cannot jump up on you for hugs for a few weeks till you say its okay. (being attacked by small kids suddenly can have you creaming through the rafters if they land on surgical wounds. I speak from experience.)

    Pain and painkillers can give you nausea, so feeling sickly is expected and normal under the circumstances and if you had something rotting inside your body would be very unwell by now trying to fight off infection.

    There is a leaflet you can print off at home or email to your employer about endo and the workplace. It's not overly helpful but might explain that your illness is a smidge more serious than the design of a 'Chair'.

    endometriosis-uk.org/downlo...

    Though I'd be tempted to tell them only the best will do, you now need a leather massage chair with inbuilt heating and extra bouncy springs, which lies flat at the push of a button and makes your coffee for you when you are in too much pain to move.Oh and don't forget the tv screen in the arm rest, so you can be distracted from pain when it gets too much !!

  • Thank you so much for your reply, it is amazing how much speaking to other people who understand your symptoms can help. I have been telling little one that mummy's tummy is broken and am waiting for op to try to fix it etc, she is very bright and understands things very well-although knowing my luck that will go out the window when i come home from op and i'll be in A&E with burst stitches or something! Love the suggestion re the chair :)

    i have an appt with GP this morning so am hoping to get some help re the pain meds, see if he can give me something to reduce the sensation of having a knitting needle up the rear and advice re work, which i can take to my occ health meeting, although am so run down and in pain that i suspect may need to reschedule it.

    thank you again and the websites were v useful x

  • Hi, My problems only started the beginning of december, lucky enough my children are 10 and 13 years and i had them young. i was in agony, i had a cyst that burst and cyst the other other side, i was in hospital several times between dec to feb and no-one really helped until i was admitted on boxing day, consultant came around and said he will book me in for a lap (six week wait), i had to really push but had it done on 12th feb. The consultant did say to me that they might not find anything, well they did, cyst removed, coil that was stuck removed and endo (this hadnt even been mentioned to me before). the op was four weeks ago and even thou i was poorly after with a bowel infection and then a stinking cold, im actually feeling alot better, bit tired and think i might be suffering with IBS. but thats nothing to what i was like Dec/Jan.

    I was given co-damol and Tramadol, as Diprolfenic and co-codemol dont agree with me and made it worse. If your are given Tramadol or Diprofenic just go careful as Tramadol is addictive, i had them for 8 weeks high dose low dose and high dose over lap time and you end up replying on them..

    Oh and keep nagging for the lap to be bought forward, i was ringing the consultants secretary.

    Best of luck x

  • Thank you Sheri. Just came from GP, have been signed off for a week and put on Tramadol. She is also writing to consultant to let him know how things have deteriorated. Going to get in to bed and try rest up. Hopefully will get a date soon, think even just having a date to aim towards would help.

  • and sounds like you have been through hell, wishing you best of health x

  • Thanks, you to.

    If you havent heard from consultant this time next week, phone the hospital, keep on at them, they will soon know your name. I would just take one Tramadol to start with i found them quite strong, but im a light weight lol. and please only take them if you feel you really need them.

    Good luck, would be interested how you get on and how long you will have to wait. mail me if you want a moan. Best of luck again x

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