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endometriosis... help!

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  • Registered Users Posts: 50 ✭✭Lainey89


    Thanks Martha : )
    I think I may have developed a bit of a tolerance to them at this stage, they are however one of the painkillers that didn't really have any side effects like drowseyness or brain fog!
    Does your pain completly go away when you take them or even any other painkiller or do they just take the edge off so that you can get on with things?


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    The ponston (I don't know if I'm spelling that right!) just take the edge off. I still have a very heavy, achy feeling after I take them and the relief from the pain doesn't last very long. The Ixprim seem to take the pain away completely but I've only taken the once since I got them because they made me very sleepy! I actually had a few drinks before I took one so maybe that explains it :o:o

    I havn't had my TOTM yet since I've gotten my new painkillers so I'll have to wait and see if they do anything for the really extreme bad pain I get around then!

    Let us know how you get on in the hospital :) I'd say you'll be so relieved once the pain goes!


  • Registered Users Posts: 758 ✭✭✭bubbaloo


    Oh ladies - I'm at my wit's end today. I'm on day 5 of my period and it is absolutely horrendous! The pain and the heavy flow are unbelievable. I'm destroyed. I've dosed myself with Cyklokapron and Ponstan Forte but they're not working their magic today! When will this ever end? :(


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    Just had a ponston forte myself! Don't worry it'll be over soon. Water bottle + chocolate + more painkillers :P


  • Registered Users Posts: 813 ✭✭✭Sinall


    Hi ladies. Just wondering if anyone here has had a lap done privately without health insurance? I was lucky enough to have mine covered by health insurance, but my friend's sister has been advised to get one done. She doesn't have health insurance but has been advised by the consultant not to go via the public system.

    Any info/thoughts would be greatly appreciated!


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  • Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    Hi,
    I just seen your message there about the lap. personally I would recommend her to go privately the difference between public and private is huge. I had two laparoscopys down publicly and neither found endo and the first actually nicked my womb and after 2 years and no pain relief at all i decided to go privately and endometriosis was found straight away!! I would never go public again but maybe thats just because ive had a bad experience but if possible i would advise private the care is so much better

    Hope this helps you :)


  • Registered Users Posts: 813 ✭✭✭Sinall


    Hi Danni - thanks so much for your response, it's really helpful. Sorry to hear you had such a hard time of it with the first 2 laps.


  • Registered Users Posts: 758 ✭✭✭bubbaloo


    Hi ladies, I just wanted to pass on some good news to all the endo sufferers. I found out this week that I am pregnant so all good things come to those who wait. I have very severe endo and have a miracle little boy, conceived through Napro, after 7 years of trying to get a diagnosis, having surgery and treatment. He is now 3 and I have spent two years having more surgery etc to treat my endo, in the hope of giving him a sibling. Well it looks like our dreams are going to come true.
    So if you have endo and you want babies, be patient, persevere and it will happen for you. :)


  • Registered Users Posts: 300 ✭✭meggysmom


    hi sinall,i had my lap done privately through the beacon in dublin,my insurance didn't pay as I didnt have it long enough:(I had a feeling about this beforehand but chose to go ahead and pay myself if they turned me down.I paid 1,400 for the op.It was a day precedure thank god as having to stay is much more expensive.With having a lap you just don't know until afterwards if you will be able to go home,depending on what they find when they go in there.
    You can have this done privately no problem,but you will have to pay.I was thrilled with my op in the beacon and the care and 1,400 didn't seem like a huge amount of money to pay for the peace of mind.I had some endo removed and a cyst,dye test,d&c and ovary unstuck from pelvic wall....


  • Registered Users Posts: 120 ✭✭Little Miss!


    bubbaloo wrote: »
    Hi ladies, I just wanted to pass on some good news to all the endo sufferers. I found out this week that I am pregnant so all good things come to those who wait. I have very severe endo and have a miracle little boy, conceived through Napro, after 7 years of trying to get a diagnosis, having surgery and treatment. He is now 3 and I have spent two years having more surgery etc to treat my endo, in the hope of giving him a sibling. Well it looks like our dreams are going to come true.
    So if you have endo and you want babies, be patient, persevere and it will happen for you. :)

    Congrats on ur fantastic news, there's hope out there for all us endo sufferers! Take care :D


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  • Registered Users Posts: 276 ✭✭MarthaMyDear


    bubbaloo wrote: »
    Hi ladies, I just wanted to pass on some good news to all the endo sufferers. I found out this week that I am pregnant so all good things come to those who wait. I have very severe endo and have a miracle little boy, conceived through Napro, after 7 years of trying to get a diagnosis, having surgery and treatment. He is now 3 and I have spent two years having more surgery etc to treat my endo, in the hope of giving him a sibling. Well it looks like our dreams are going to come true.
    So if you have endo and you want babies, be patient, persevere and it will happen for you. :)


    Congrats :):):) so happy for you! Make sure to keep us updated on how your getting on! xx


  • Registered Users Posts: 277 ✭✭Blue_Seas


    hey all,

    my doctor suspects I have endo due to painful menstruation, painful bowel movements, heavy and clot-y (is that even a word? :pac:) menstruation and pain with penetration.

    I have an appointment with a gynae in about 6 weeks but I'm starting to get worried. Everyone seems to be in much worse pain than I am. I get a dull ache through my cycle, with some evenings turning in to a much more painful, burning ache in my stomach area and lower back.
    Pain with my bowel area is nearly every day, I haven't tracked it enough to know if it's worse on my period but I know some days it's stabbing and horrible. Some cycles, for no apparent reason, I'll be sitting down doing nothing and get a sharp, stabbing pain that causes me to double over. I only remember this happening twice - the first time I didn't mention it to anyone but the second time I went in to A&E with the pain and how white I looked. It extended up to my chest.

    That doesn't seem that bad compared to the monthly struggle everyone else has.


  • Registered Users Posts: 813 ✭✭✭Sinall


    Hi Blue Seas

    Endo is a funny one - the amount of pain, or other symptoms you have doesn't necessarily correlate to the severity of your endo. Don't worry about not having 'enough' pain - just explain everything to your gynae and see what he/she says. Come back here after that if you want to talk about anything! Good luck.


  • Registered Users Posts: 1 sappy83


    oh ladies i am so glad i found this forum!!! FINALLY a group of gals that know exactly how i feel! i was diagnosed with endo in 2001 at 18, was minor and treated with the pill, so it was put at the back of my mind and stayed there until I got married recently! came off the pill in May and cycle returned straight away! less than 24hrs into my period and i cannot bloody move with the pain!!!! have an appointment with my GP on wednesday so hoping to leave there with the referral letter! does anyone know what hospitals take the medical card or i am gonna turn into a skeleton waiting if i go that route! hubby not working so money is tight but there is no way that i can cope with this pain every month! for those of ye that have had the laser treatment have u seen any great improvements??? thanks in advance


  • Registered Users Posts: 62 ✭✭miss dakota


    Hi Ladies, this thread has brought hope to me after spending the last 5 days in bed in agony,with the stabbing & migraines etc, have to do something.
    Could anyone kindly reccommend any gynys they are pleased with,as d'ont know who to contact, wud be most greatfull tks mill


  • Registered Users Posts: 758 ✭✭✭bubbaloo


    Hi Ladies, this thread has brought hope to me after spending the last 5 days in bed in agony,with the stabbing & migraines etc, have to do something.
    Could anyone kindly reccommend any gynys they are pleased with,as d'ont know who to contact, wud be most greatfull tks mill

    Isn't it horrific? I'll send you a pm now with a couple of names. :)


  • Registered Users Posts: 813 ✭✭✭Sinall


    sappy83 wrote: »
    oh ladies i am so glad i found this forum!!! FINALLY a group of gals that know exactly how i feel! i was diagnosed with endo in 2001 at 18, was minor and treated with the pill, so it was put at the back of my mind and stayed there until I got married recently! came off the pill in May and cycle returned straight away! less than 24hrs into my period and i cannot bloody move with the pain!!!! have an appointment with my GP on wednesday so hoping to leave there with the referral letter! does anyone know what hospitals take the medical card or i am gonna turn into a skeleton waiting if i go that route! hubby not working so money is tight but there is no way that i can cope with this pain every month! for those of ye that have had the laser treatment have u seen any great improvements??? thanks in advance

    Hi Sappy83! I don't know about hospitals that take medical cards, but I can tell you a bit about my own experience with laser etc. Apparently, in the words of my consultant, my endo was 'lasered and vaporised to good effect.' After the operation I felt a lot cleaner and lighter if that makes sense - once I'd gotten over the laparoscopy!

    I still have some symptoms but they aren't as bad as before the operation, although they still cause problems. For me, my laparascopy was initially to diagnose endo, but also to treat it if they found any in there. So it was a relief to have a proper diagnosis as I got some strange responses from doctors over the years - one told me that my symptoms were due to age and were my body's way of telling me to get pregnant!!!! :confused:

    I don't feel as 'hormonal' since the surgery and I don't just meant that in a PMT sense. I feel more myself again. I've overhauled my diet and found that my pain is substantially reduced since I've cut out wheat and red meat. Every month that I am not in a daze on painkillers and able to dress myself and walk around is a miracle and that gives me the motivation to stay off wheat etc!

    Endo can't be 'cured' so it never goes away, but I think the operation did help me to feel more normal again.

    I hope you get a good result with your doctor and good luck with it all.


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    Hi girls :)

    Hope everyone is doing ok! I just wanted to ask, does endo affect your relationships with guys? Myself and the BF are on a "break" basically because he can't handle the lack of intercourse anymore. Because it is so painful I have no drive for it either :( I also think he has it in the back of his head that I may not be able to have children. He said that it's terrible I suffer with it but that he should be sympathized with as well because he suffers in a different way!

    Any thoughts? Feeling very :( now!


  • Registered Users Posts: 813 ✭✭✭Sinall


    Hi MarthaMyDear. Really sorry to hear that you and your BF are on a break. I can completely empathise - the painful intercourse (and other things!) can be difficult to deal with and can definitely make you want it less.

    I'm lucky in that I'm not restricted at the moment, but I know my fiancé does sometimes feel that everything has to revolve around my cycle - which can unfortunately be true!

    Lack of physical intimacy in a relationship causes its own problems. I completely understand how you feel and can also see how your BF finds it difficult as well. Without being too graphic, do you do 'other' things aside from intercourse? Are you still affectionate with each other? Have you spoken to your GP about it?


  • Registered Users Posts: 758 ✭✭✭bubbaloo


    Hi Martha - I'm sorry to hear you're having such a hard time.
    I second everything that Sinall said - it can be very difficult and my husband and I went through our own difficult times but if you can talk honestly to each other it can help. I'm lucky that my hubby has always been very understanding and never put pressure on me but I felt the pressure nonetheless. Talk to your GP or maybe a counsellor of some kind? Best of luck.:)


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  • Registered Users Posts: 50 ✭✭Lainey89


    Hi Martha. Sorry to hear about you and your boyfriend.

    When I was woth my first partner I didn't know I had endo and intercourse was extremly painful. Being young and inexperience I figured it would ease up but it got to the point were I expected pain so then you tense up and then that causes more pain etc. I also think the pill I was on wasn't helping the situation as a side effect of the pill can by dryness.

    Intercourse never hurt with my previous partner. I agree with Sinall that even just physical intimacy is very important, as is doing other "things" (oral, shared showers, lots of cuddeling etc) if you're unable for intercourse. I think I came across an article before that was essentially positions for people who had pain with intercourse.

    Might also be a good idea to discuss it with your gyny if you havent already.


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    Thank you for all your replies! We do a few other things apart from the intercourse but almost because we feel we have to if that makes sense? I asked my doctor about it and she literally did not have an answer! She said a lot of my endo is located near the bowel and that's why it's so sore. The only thing she could recommend is taking painkillers to lessen the pain.


  • Registered Users Posts: 813 ✭✭✭Sinall


    I get what you mean about doing other things because you feel like you should do them - like if intercourse isn't possible then you have to do something, right?!

    Is it your GP or your gynae you spoke to about it? I often find that my GP just doesn't know enough about endo to give me any real informed, or detailed answers, but that my gynae can usually help.

    Have you seen/spoken to your BF recently? Try to concentrate on yourself for a while - be good to yourself, eat well, exercise if you can, try to relax, hang out with friends and look after yourself. Emotional trauma really takes its toll and that can make your physical symptoms worse - and vice versa.

    I'm having a particularly painful day today - the first one in a while. I know it's because I haven't been as good with my diet recently and that really affects me. Think it'll be a duvet day all day!


  • Registered Users Posts: 813 ✭✭✭Sinall


    Hope everyone has been doing well and that things are improving. My endo has taken a bit of a turn for the worse in the last couple of months so am off to see a new consultant in January.


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    Hope everyone is feeling ok? Just have a few questions! Has anybody's cramps gotten more severe or painful when they are on the pill? I thought the pill was meant to help but just started back on it this month and my cramps have been much sharper and sudden, like I'm being stabbed compared to the dull ache period cramps that I'm used to!

    Also, anybody been on tylex? I'm on ponston and tylex now but find the tylex makes me sooooo spaced out!


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    Also just to add! Had to finish things with the bf because of endo problems :( at least I don't have to worry about it now but it was the main reason we ended it after two years so worried about how it will effect relationships in the future!


  • Registered Users Posts: 813 ✭✭✭Sinall


    Hey Martha! I'm not on the pill but I do sometimes get those stabbing pains you mention. It's alarming when they happen and lately I've been getting them in different places too. Am going to see a new consultant in January sometime so will ask about those then. How are you feeling at other times of the month?

    I've been on tylex for something else in the past and it didn't agree with my stomach at all!

    Really sorry that your relationship ended due to endo-related problems. I hope 2013 is a really good year for you.

    xx


  • Registered Users Posts: 276 ✭✭MarthaMyDear


    Thanks :) I'm sore for almost all the month with either dull or bad pains so going to go back to my consultant in Jan! I can't keep taking all these painkillers because they make me so spaced out and I'm in my final year of college so they don't help!!

    I don't know if they would schedule me for another lap because I only had one just over a year ago! Hope everyone has a great Christmas :)


  • Registered Users Posts: 50 ✭✭Lainey89


    Hello ladies

    I am wondering does anyone have any experience with Dr Hugh O' Connor? I am seriously considering asking my GP for a referal letter at this stage as I am a bit fed up with the aches and pains. All the info I can find is generally to do with treating endo as a means to pregnancy so I'd like any info specifically on pain managment and helping with symptoms etc.


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


    Lainey89 wrote: »
    Hello ladies

    I am wondering does anyone have any experience with Dr Hugh O' Connor? I am seriously considering asking my GP for a referal letter at this stage as I am a bit fed up with the aches and pains. All the info I can find is generally to do with treating endo as a means to pregnancy so I'd like any info specifically on pain managment and helping with symptoms etc.

    Hi there,

    I know a lot of women in the Facebook group have had him as a consultant. I would have a look for the page. It's private, so someone needs to add you!


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