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endometriosis... help!

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  • Registered Users Posts: 276 ✭✭MarthaMyDear


    Have my lap in the morning. Have been on the liquid diet all day-3 different kinds of soup and some smoothies!!

    I'm really nervous, mainly of just the hospital environment and the pain when I wake up. I hear it's not too bad though I just can't wait for it to be over!

    I feel so much better knowing so many people on this thread have been through the same thing and I'll be thinking of all of you when I'm really nervous tomorrow! I think going into the theatre and waiting to be put to sleep will be the worst :(

    I'll report back as soon as I can and let everyone know how it went :)


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    So home from hospital a few hours and not feeling too bad! I'm gonna tell my story so other people who have to get the laparoscopy know what to expect! I spent hours last night looking for info on the internet (not advisable!)

    I slept terrible last night worrying about the hospital and felt like I was gonna get sick with nerves on the way there. I got admitted and was brought up to the ward where I was shown a bed after a few minutes then left there. I couldn't relax at all I was completely freaked out at this stage! Got a few visits from some nurses and a doctor and had to sign some forms-my hand was shaking so much!

    Was dozing off after waiting a couple of hours when someone came to get me. Walking down to the theatre was horrible! I was put on a bed just outside the theatre and got an IV in. I started to not be as nervous then as there was no turning back and I knew I'd be asleep soon! I was brought in then and given an injection to make me sleepy (and very happy!) then was giving the other injection to knock me out. The last thing I remember is the oxegen mask.

    I woke up with stinging in my stomach and was given painkillers. The pain never got too bad and I didn't get nausea either! I think I was one of the lucky ones! I was up and talking not long after coming out of recovery. I had some tea and toast and was reading my book for most of the day. My stomach did have a pulling/stingy sensation when I moved the wrong way! When my lift came to get me I waited in the main waiting room downstairs for them to bring the car around and I started to feel really horrible and hot. Woke up sprawled out on a row of seats. My first time ever fainting! Nobody in the room even noticed! :rolleyes: Think they thought I was having a little snooze...

    Anyway..sorry for the long post don't know if it makes any sense! After all that it turns out that I am now officially a member of the endo club! Apparently I'm lucky to have caught it at 19. The doctor lasered it off but I assume I'll have to go back again for more. Have another appointment in November! He said he found in the area just above my bowel and below my uterus.

    In bed now with a hot water bottle on a slightly aching shoulder and taking nuerofen plus for my tummy pains :D


  • Registered Users Posts: 758 ✭✭✭bubbaloo


    Well done Martha - glad you're doing well and isn't it great that you have discovered the endo now and you know what you're up against!
    Move your shoulder as much as you can - walk around if possible - that will get rid of the pain.
    I can't believe nobody noticed when you fainted - I have had it done 3 times and never fainted, but a friend of mine has also had 3 laps done and fainted twice. The anaesthetic affects everyone differently.
    Good luck in November. :)


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    Thank you :) feeling odd this morning but happy to have an excuse for a few days of bed rest! Meant to be back in work Thursday have to see how I go!

    I'm not really up to scratch on endo, I'm just wondering because I have it now does this mean it'll probably get worse as I get older? And could it grow in other places apart from where he found it or does it usually stay in the same area? I probably asked him this but was too out of it on pain killers ;)


  • Registered Users Posts: 50 ✭✭Lainey89


    Hi Martha. Glad to here the op went well for you. I'm very close to you in age and got diagnosed last year. My understanding of it was that it will probably get worse as you get older but because you know you have it you can manage it by taking the pill. You're doc will probably discuss this with you in November but feel free to PM me if you want to talk :)


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  • Registered Users Posts: 276 ✭✭MarthaMyDear


    Thanks Lainey :) I've been on the pill for years due to bad pains so I'll definitely be staying on it!


  • Registered Users Posts: 758 ✭✭✭bubbaloo


    Ladies I can tell you, as a 37 year old, that unfortunately it does get worse as you get older but there are things you can do to help yourselves....
    A good healthy diet always helps - I was very heavy up until last October and this did certainly not help. Try, where possible, to stay away from dairy products and stock up Omega 3. The pill will help, but as you get older IF you want to have children you should talk to your doc before trying to conceive.
    It took me 5 years (and 2 miscarriages) to get my diagnosis so although it doesn't seem like it now, you are lucky to know early in life what you are facing. The good news is that I have a little boy now so if you want it it's possible. :)


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    did any of you guys go for a check up after your lap? I have a few questions about endo and I don't wanna wait for two months until my next hospital appointment! Would they think I was silly going into my college doctor for a check up? Still have pulling and pain in my belly button and very tired but grand apart from that! Stitches soooo itchy :(


  • Registered Users Posts: 50 ✭✭Lainey89


    hey Martha, hope you're feeling better after your surgery. I went to the college doc last year to ask about pain managment for endo. I had to see the nurse first, and she had a vague knowledge of it. She also asked me if they were still telling women with it to get pregnant and it'd sort itself out. This was an old attitude to it. The doc knew very little on it but was helpful with the pain managment side. It would really be best to talk to your gyny as you get much better info. In the mean time, I've found this site very helpful http://www.endo-resolved.com/index.html


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    Thanks! Went to the college doctor and he was very dismissive..I was in their for about 30 seconds. I was annoyed because he was really patronizing! I tried to ask him some questions but he didn't answer them, just gonna have to wait for my appointment in November!


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  • Registered Users Posts: 66 ✭✭Netanya


    I wondered if anyone would be interested in taking part in a radio documentary about endo, and it's effect on women in Ireland? I really would love to hear from women who are dealing with the disease while using the southern Irish health system.

    I feel that the approach taken by gp's, the medical industry, can leave a lot to be desired. Never mind dealing with the people in your life who think that because they can't see anything physically wrong on the outside means that they can treat you like you don't have anything wrong at all, and that these things will never change unless we give people the stories of our suffering and inform them of how it effects us on a daily basis.

    If anyone is interested please please pm me. I would love to hear from you.


  • Registered Users Posts: 50 ✭✭Lainey89


    Grr. I feel in bits, painkillers aren't helping and I'm heartbroken. Wonderful start to the New Year!


  • Registered Users Posts: 2,168 ✭✭✭Ms. Koi


    Are you alright Lainey? What painkillers are you on?x


  • Registered Users Posts: 50 ✭✭Lainey89


    Just the strong ibeprofen, don't find ponstan any use at all. Might be a reaction to emotional pain tho either, I'm not entirely sure


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    Hope everyones doing ok. I've been taking the Feminex like there's no tomorrow! :o I find it's the only thing working at the moment.


  • Registered Users Posts: 50 ✭✭Lainey89


    I never found Feminex any use, and I've a codeine intolerance so pretty much stuck with regular ibuprofen. The pain wasn't too bad in the end when it actually showed up, albet 2 days late which resulted in a bit of panic.

    I've really cut back on milk and bread over the last 3 months and found that it seems to be helping. Has anyone else tried this?


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    No I havn't tried that! I think I will though, I heard cutting out dairy is good but I eat a lot of cheese don't know if I could survive without it :o

    I went back to my consultant last month, he said to take the pill 3 months straight at a time to give myself a break from the pain but decided against it this month. I didn't get my period this month though? Just never came! Have had mild-ish cramps and back pain literally all month but no sign of it and was due nearly 2 weeks ago??

    Kinda wondering why, can't be anything baby related unless it's a baby jesus because I havn't been able to do anything like that for months with my boyfriend due to the endo :mad: He'll get sick of me soon!!!


  • Registered Users Posts: 50 ✭✭Lainey89


    I was taking it for 3 months straight last year and found myself getting very agitated about halfway through the third pack so just went back to 2 packs straight. Sometimes all the changing about of the amount of hormones can make it not show up so I wouldn't worry too much about that! : D
    Kinda wondering why, can't be anything baby related unless it's a baby jesus because I havn't been able to do anything like that for months with my boyfriend due to the endo mad.gif He'll get sick of me soon!!!

    Sucks doesn't it? My relationship just ended and while those things were brilliant with him I'm, not entirely sure he completly understood how painful it could be, and had been in the past. Kinda hard for guys to grasp the idea of incredibly painful sex I think :(


  • Registered Users Posts: 813 ✭✭✭Sinall


    I had a laparoscopy last week and have been reading up on how your diet can help/worsen the symptoms of endometriosis. Apparently wheat, dairy and sugar are the big ones to try and cut out. Have been avoiding wheat for nearly 2 months now and personally I find that's helped me quite a bit. Trying to lose the sugar addiction will be harder!


  • Registered Users Posts: 461 ✭✭Howitzer


    Hi, I'm looking for name of a gyn that has good experience treating endometriosis in a conservative manner (.i.e. priority on preserving fertility).

    Anyone have someone they got on well with? please PM me details if you do - it would be much appreciated.

    My wife was diagnosed via laproscopy recently - not really confident in the person we are with at the moment...


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  • Registered Users Posts: 276 ✭✭MarthaMyDear


    Lainey89 wrote: »
    Sucks doesn't it? My relationship just ended and while those things were brilliant with him I'm, not entirely sure he completly understood how painful it could be, and had been in the past. Kinda hard for guys to grasp the idea of incredibly painful sex I think :(

    Yeah, it really is hard. It's been so long since we've been able to anything and although he's very understanding he does get frustrated.
    He's probably sick of me saying I have cramps too, he must internally roll his eyes every time I say it!


  • Closed Accounts Posts: 3 sino30


    Dr.Mary Wingfield in Holles Street is an endo specialist and also works in de merrion clinic,i know she is gud wit de endo but ive also heard lots of people praising her wen dey hav had problems conceiving


  • Closed Accounts Posts: 4 butterfly1


    HI All,

    Personally, I always more or less add pains (periods cramps, back pains, bowel movement pains). however these pains got worse the last 2 years and i was doing multiple infections (UTI, kidneys and pelvic infections). All my symptoms worsen when i stop the pill. After multiple smear and test done which always came back normal, a female GP in rathfarnham mentioned endometriosis to me and put me back on contraceptive pill to treat it. However in November 2011, my back got blocked and i handed up in the Beacon emergency room. An MRI of my lower back was made which showed again nothing. So i decided to mention the requirements of a Gyneocologist consultation for possible endometriosis during my time there.

    In december, I was diagnosed with a stage 4 endometriosis with adhesions to rectum during a laparoscopy at the beacon hospital (Sandyford).I already received my decapetyl injection, and I am scheduled for another laparoscopy in April to try to remove as much as possible.

    Does anybody know or heard of DR Prendeville at the beacon as he will be my surgeon? I heard that he is good but just want to have ur opinion.

    Also a lot of the questions going around my head these days are, what are my chances to conceive after the op? natural conception or IVF? what s your experiences?


  • Registered Users Posts: 813 ✭✭✭Sinall


    From what I've read I believe your chances of conception seem to be increased during the 6-9 months immediately following the laparoscopy. A girl I know recently became pregnant 2 months after her laparoscopy and a colleague's daughter is pregnant one month post-op. I know the endometriosis can reoccur in a high percentage of people, but I believe an endometriosis-friendly diet can help your chances of conceiving naturally. I don't know much about IVF but I know there are a number of endo-related posts in the Assisted Reproduction thread in the Trying to Conceive forum and they would know more about it over there!


  • Registered Users Posts: 50 ✭✭Lainey89


    Hey all,

    Anyone heading to the Endo information day in Lucan next Saturday?
    http://www.endo.ie/


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    Lainey89 wrote: »
    Hey all,

    Anyone heading to the Endo information day in Lucan next Saturday?
    http://www.endo.ie/

    ohh I may go to that! Thanks :)


  • Registered Users Posts: 813 ✭✭✭Sinall


    I went to a nutritionist on Monday, who specialises in endometriosis diets. It was really interesting and there was lots of information to take in. I filled in a questionnaire and was given lists of foods to avoid and lists of foods to increase, as well as supplements to take for a few months, until I start to sort my diet out. Feel free to PM me for further info. I went to see this lady in London, but she also does telephone consultations if anyone is interested. Will let you know how I get on and if it makes a difference!


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    hows everyone doing? I finally got some new painkillers that are helping :D

    Ponstan Forte and Ixprim, anyone on either? The ponstan are grand they take the edge off I've only taken one of the Ixprim and they seem really strong!!


  • Registered Users Posts: 50 ✭✭Lainey89


    I've been on Ixprim for the last 3 weeks (6 tabs a day) as I've had constant severe pain in my right abdomen for the last 6 weeks!. Went to Holles st. about a month ago as I though it might have been a cyst and the did a scan, everything was textbook perfect so they said it wasn't a gyny problem. A week later I went to Naas A&E as I was in agony and wasn't eating, GP though it might be appendix so of I went to sit on a trolley for 36 hours to have another ultrasound. Told everything was fine and that it was probably the endo and go back to my gyny, even tho she was unwilling to go in and have a look after the scan was clear.

    Went to the A&E in the Hermitage after that, they did a CT scan which was also normal. The doc there put me on Ixprim and Vimovo. He thought I might have Chron's or IBS even tho I have zero bowl problems!

    So long story short I wnt to see a gastro/general surgeon who operated on my before and he's preforming another laprascopy on Wednesday. I hope he finds something, or sorts out the existing adhesions that are present. I had to miss 3 weeks of work from this and its impacting my life. The painkillers take the edge off but I have to take them every 6 hours nearly or the pain shows back up. Sorry for the rant guys, I'm all grrr at the moment.


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  • Registered Users Posts: 276 ✭✭MarthaMyDear


    awh Lainey I'm really sorry to hear about all that! God I find Ixprim very strong so you must be in some amount of pain...I only have to take them the few days of the month that the pain gets horrible. Good luck with your lap, hopefully they find out what's wrong. xx


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