I have endo.. But curious about other symptoms?

Hi

I was diagnosed with endo via laparoscopy in October 2010 (after a year or more of complaining to my GP of pain). They offered for me to have it taken away via another operation but I chose to try taking the pill continuously first to see if it helped with the pain. Regardless of not having periods, the pain was still too much and eventually I could not handle it any more and I had my second laparoscopy in November 2011 and they removed the endo.

When I came round, the registrar came to see me just to say 'The endometriosis has spread and we managed to remove two area's'. I wasn't told where from and all she said is that my consultant wanted to see me in six weeks time which should have worked out to Christmas week, however my consultant had Christmas and New Year booked off so my appointment is not until the 19th January.

I have recently had pain in the same area as I did before, not as bad but still noticable. I also have been suffering from constipation one minute and diarrhea the next. I am constantly tired and will get home from work and sleep straight away. I am only 21 and feel old before my time! Is this related to the endo? Is it worth mentioning at my appointment next week? I worry now whenever I experience new symptoms as I have never really suffered with health issues before, but now it seems to be one thing after another. I guess my fear is that it is now affecting my bowels..

Any advice/opinions welcome!

Thanks

5 Replies

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  • hi sorry to hear u are in distress im 25 and have been waiting for gps to diagnose me for 6 yrs they diagnosed me last year in june before that i had pain wenever i opened my bowel and would tear but it wasnt affected on my bowel atall so dont stress over that to much cos i was i was also worried about my bladder cos it also hurt wen i went to wee they removed my endo in june by september i was back in all the time i feel old before my time im lucky in one way thoufgh as i dont work due to mental illness and my husband is my carer but cant imagine how hard it is to work with this condition i dont get much sleep am exhausted all the time my pill box is way to big for my age and have to refuse invitiations as i cant tell them in advance i have to let them know on the day i would mention everything to gynae cos u never know wether something could be important and plus he needs to know how it is affecting ur life

    onone way as i dont work

  • sorry wouldnt let me type anymore bloody pc lol anyway wot i was saying was cos of my mental health i dont work i cant imagine wot it must be like to have to work under these health conditions i admire all u ladies so much i would mention all your symptoms and feeling to gynae cos u never know wether something is important and he needs to know how u feel hope all goes well will be thinking of u on the 19th hun xxx

  • Hi Kay-R,

    I have been diagnosed with endo since Nov2010 via laparoscopy at age of 23, the pain you are suffering after lapo is probably scar tissue from where they got rid of endo but tell the doc anyway (they lasered mine with my 1st lap, not sure why they waited a year for you).

    I tried microgynon continuous for 3months and cilest continuous for 3months but pain and bleeding for me was still everyday. Tiredness is also a big endo problem! So, they put me on Zoladex injections (brings on a kind of mini-menopause) for a break. I have just had my 3rd month of injections which has given me one month off from bleeding but no pain relief. Constipation and diarrhoea has been a constant problem with me and because I am still in pain docs are thinking it maybe something else like IBS or somethingelse caused by the endo - I am being referred to a bowel specialist some time next month.

    I'm the same as you - my doctor hadn't seen me for nearly 10years before I started going about my periods (I stayed quiet and accepted the pain thinking all girls go through it and I was being a wuss)

    My advice is DON'T SUFFER IN SILENCE!! Write everything down (the dates you bleed and how heavy they are (how many pads/ tampons you use per day)/ rate your daily pain in a diary of 1-10 and the main areas pain strikes/ how many bowel movements you have per day and consistancy - if you bleed from back passage as well. The more info they have to go on the better they can help.

    I hope I have helped :) Probably best to look at the website linked to Health Unlocked... endometriosis-uk.org/inform... - there is also a link to download a one month diary page asking you above questions.

    Good Luck on the 19th!

    Amy.

  • Thank you both for replying :) I really appreciate the advice and help. And Amy, thank you for that link, I found it really usefull! It feels so much easier to write it all down.. I know once I get into the consultants office my mind goes to jelly and I forget to say and ask things.

    The first lap was just to diagnose, they didn't mention anything before hand about them being suspicious of endo, I'd had a pelvic ultrasound and that was fine. After the lap she told me it was endo and offered to have it removed, but also went through the risks of the ablation affecting fertility, and suggested I tried the pill constant first. I didn't want another operation so I was happy to go down that route, but the pain was still too much so I gave in.

    I'm currently taking Yasmin but the dosage is altered compared the standard contraception pill and I take it all year round - every day. She mentioned an injection to me that would shut down my ovaries and trick my body into thinking i'm going through menopause and then when it comes to me wanting children, start them back up. Is that the Zoladex injection?

    She also mentioned the Marina coil which I really don't want. I have never heard anyone have a good thing to say about it so I don't want to risk further problems.

    Thanks again for your advice

    x

  • i have suffered from endo for over 20yrs,ive had 6 laps to remove it and now a full hysterectomy at the age of 37 .7 ops and a twin pergnancy in 7yrs is a lot .I surprised how my body has taken it .Well anyway alot of my symptoms are leg/groin pain ,tiredness ,sickness,before hyst heavy bleeding ,shoulder pain ,pain in sides ,back ,bum (feeling as if insides ae going to fall out )bowel pain .......oh its endless .....guess what after hysterectomy ,leg/groin pain is back ,will this never end ,tc hunny x

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