Endometriosis

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Noms44
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Posted: Tue Mar 03, 2009 8:51 pm 
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mimilo wrote:
hi again, i just read one of your old posts again and saw that you already ARE seeing a specialist, sorry. it's totally weird that they don't say the same thing! i'm definitely going to tripple-ask mine about this. i'll let you know.
also, you might like to know that he says its way better to have it removed by excision than lazer, apparently it stays away longer and they don;t miss anything that way x


Hi Mimilo hope your doing well after your keyhole surgery and not to sore, I had that done twice before once to make sure my tubes where not blocked and when they where in there they found a cyst which they only drained and never spotted my endo at all, and then I moved to the clinic because I knew something was wrong with me and I started artificial insimanation and had to stop because the cyst that had been drained had grown to the size of an orange and should have been removed not drained so I had to stop treatment and go get keyhole surgery done again to remove the cyst but when they where in there again they spotted my endo and did not remove it while in there and I always wondered why I know now its all down to money I have been messed around so much by doctors and so fed up now with them, the way I see it they should have done the cyst and endo while they where in there makes me so mad...so when I went back to IVF clinic and to told them about my Endo she said it would be ok to go ahead with IVF and I asked her should I get it removed and she said no as I told you, and I have done so much reserch on my Endo Im always on the the internet checking different sites and getting as much information as I can before I go back to the clinic which Im due back tomorrow so be interesting to see what she has to say when I ask her to get it removed...if she disagrees I'll go else where for second opinion already rang my GP about it and she said talk to clinic first and if I get no where them come back to her and she refer me to a gyny, sorry for such long message nice to be able to talk to someone thats going through the same. Great your on the right path now fingers crossed for you and hope your relaxing. Do you mind me asking where your from? I'm living in Ireland just asking because if your from Ireland be nice to try same doctor as you are dealing with.

Chat soon Mimilo and thanks so much for your chats been such a help to me you know idea l will let you know what way the clinic goes tomorrow xxxxxx
mimilo
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Posted: Tue Mar 03, 2009 11:08 pm 
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i really feel for you having been stuffed around that much, that's terrible. i really hope it gets sorted for you. i'm in australia so unfortunately as far as it gets... but i will let you know what my doc said next time i see him. looking forward to hear what yours says too. all the best xx
Noms44
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Posted: Thu Mar 05, 2009 4:35 pm 
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mimilo wrote:
i really feel for you having been stuffed around that much, that's terrible. i really hope it gets sorted for you. i'm in australia so unfortunately as far as it gets... but i will let you know what my doc said next time i see him. looking forward to hear what yours says too. all the best xx


Hi Mimilo how are you feeling now are you still very soar? Hope your feeling better. I got on not to good with my clinic I listened to what she had to say and she was so rude towards me when I brought up that I had done some reserch about my endo and said I could not get it removed because it was on my ovary and I ask about getting it lasered and she said yes but she said she didn't know how soon she could get me in maybe April but was more interested in when I was doing my next IVF treatment wanted me to go back on the pill till June thats when she wants me to do next IVF but we said no why go on pill when we can still try and hope to concieve naturaly while we wait for keyhole surgery, I know it cams it down but I just feel she is doing everything to stop me getting pregnant, she also said my endo was at grade 4 which she told me at the beginning a yr and half ago that it was grade 5/6 so theres a lie right there and alse suggested that I would have better chance of holding onto my egg if it was and egg donar who didn't suffer with Endo, an egg dosen't carry endo so that just made me mad because im producing my own eggs I had three first time around and second time I had two but I know its not as many as some women have but I still have my own and it only takes one. So Im meeting my GP Tuesday to get her to refare me to a good gynaecologist who deals with Endo don't trust who she is going to send me to. I was so upset leaving the clinic after the way she spoke to us after all we have been through and spent with them. I just need to fing new IVF clinic not going back to them.

Chat to you soon let me know how you are feeling and wish you all the best next few months trying naturaly xxxxx
mimilo
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Posted: Fri Mar 06, 2009 12:07 am 
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i really feel for you noms. i think you should try to find someone else to help you. i hope your gp can recommend someone good. i can't believe they treat you like that, they should know how hard all this is for people.
just so you know, i had two small patches of endo on one of my ovaries and he removed that without any probs. i feel much better now, back to normal already after a week, only got a bit of an unsettled tummy that's all.
let me know how it all goes. best of luck xx
Noms44
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Posted: Fri Mar 06, 2009 7:33 am 
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mimilo wrote:
i really feel for you noms. i think you should try to find someone else to help you. i hope your gp can recommend someone good. i can't believe they treat you like that, they should know how hard all this is for people.
just so you know, i had two small patches of endo on one of my ovaries and he removed that without any probs. i feel much better now, back to normal already after a week, only got a bit of an unsettled tummy that's all.
let me know how it all goes. best of luck xx


Hi Mimilo thats great your feeling good that soon ah Im hoping the best for you really am. Your right IVF tough without them being nasty to you but I feel I'm on the right path now found a new clinic last night thank god for the internet is all I can say, they do keyhole on you before IVF treatment so thats a good sign there a bit further away but worth the extra traveling, I just feel we have been messed around so much by them and feel Im at the same stage I was when I first started with them. So you had to patches removed on your ovarys thats mad she nearly jumped down my throath when I mentioned it thats great to know at least Im going to get it looked at now properly and should know more.

Thanks for that Mimilo would have never known any of this only I chatted to you.

Chat soon xxxxxxxx
mimilo
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Posted: Fri Mar 13, 2009 6:41 am 
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hi noms,
i was just wondering how you were getting along? have you been to see your new specialist yet? hope it's all on the right track xx
Noms44
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Posted: Fri Mar 13, 2009 7:48 am 
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mimilo wrote:
hi noms,
i was just wondering how you were getting along? have you been to see your new specialist yet? hope it's all on the right track xx


Hi Mimilo

How are you? Hope your feeling better? Are you still very soar?
I'm getting on good in much better form thank god feel Im getting somewhere now...went to my GP and have good Gyny who deals with Endo and I meet with him on Monday to organise keyhole surgery, and the new clinic we are going with suggested we get it done before we come to them they require keyhole surgery to be done before they start IVF can't believe how much we where taken for a ride its really upsets me that there are clinics out there just for your money and can play with your emotions like that but its behind us now and we are alot happier now, just glad to be away from that clinic and not to have anything to do with them anymore.

Will let you know how it goes with gyny, take it easy and chat to you soon xxxx
I will
mimilo
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Posted: Fri Mar 13, 2009 9:08 am 
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oh, that's such good news noms, so glad it's getting there for you!!
i'm doing well too, i was back at work less than a week and a half after surgery and i'm starting to exercise lightly as well. not sore at all, just little sensations going through my tummy sometimes, but it's amazing how quickly i've recovered. i expected it to be a much slower process.
so glad that you too are getting the help you deserve now.
take care, chat soon xx
Noms44
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Posted: Tue Mar 31, 2009 8:47 pm 
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mimilo wrote:
oh, that's such good news noms, so glad it's getting there for you!!
i'm doing well too, i was back at work less than a week and a half after surgery and i'm starting to exercise lightly as well. not sore at all, just little sensations going through my tummy sometimes, but it's amazing how quickly i've recovered. i expected it to be a much slower process.
so glad that you too are getting the help you deserve now.
take care, chat soon xx


Hi Mimilo

How are you? Great to hear your feeling much better and recovered that quickly. I didn't get on to well with the gyny only good thing came out of it was organising my surgery so just waiting on my appointment should get one in next few weeks so thats good, he wanted me to do injections to shrink my endo so that ment I would have to do it for 6 months and you cant try naturaly at all once you start injections so I just said no waisted enough time and money on doctors just feel we have been giving to them all the time and getting nothing back in return so I just told him to put me down for keyhole surgery so Im happy with that so just have to wait now.

So chat to you soon say little prayer for you all goes well now for you and it will.

Take care

Noms XXXXXX
mimilo
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Posted: Tue Mar 31, 2009 8:55 pm 
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hi noms,
well its good to hear things are moving along for you at least.
so are you on a waiting list for surgery now or do you have a date for it?
hope you don't have to wait too long.
its amazing stuff, the only sign i have of it now is two tiny scars on my tummy and i feel a million dollars! i had irritable bowel and nasty heavy painful periods before, now my tummy is perfect! it took a couple of weeks but now i feel better than ever.
so now we're just ttc-ing for all its worth!
at the moment i'm in my first 2 week-wait since surgery.
all the best to you and let us know how it goes xx
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Me 28 (have endo)
DH 38 (has low morphology)
TTC #1 since Nov 07
Surgery to remove endo Feb 09
Starting ICSI Aug 09
mimilo
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Posted: Sat May 09, 2009 4:40 am 
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hi noms,
i haven't seen you here for ages... how are you? are you ok?
let us know how you're getting on xx
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Me 28 (have endo)
DH 38 (has low morphology)
TTC #1 since Nov 07
Surgery to remove endo Feb 09
Starting ICSI Aug 09
jomodo
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Posted: Sat May 09, 2009 10:08 am 
Post subject: IVF & Sterilisation reversal
Hi,
I've suffered from endometriosis for well over 20 years. I've had so much treatment and surgery, with bits and pieces being removed along the way... as a result I have also ended up with adhesions which have stuck everything together. I was told that I would certainly have problems conceiving naturally, however, I did get pregnant and now have a 4 year old! I got pregnant again just over 2 years ago but unfortunately miscarried. We tried and tried again and after several investigations and more surgery, I was told that the endometriosis had returned and this time, it was worse than ever. Both of my tubes are blocked and kinked plus the fimbria at the ends have been destroyed. IVF was our only option.
We started our first cycle at the end of last year.... it failed Sad We did however have two embryos frozen... they were put back last month and I'm now 7 weeks pregnant... I had a scan at 6 weeks and one of the embryos made it Very Happy I know that i'm not out the woods yet... I have medication to take to support the pregnancy right up until 14 weeks, but fingers crossed...
mimilo
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Posted: Sat May 09, 2009 10:05 pm 
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wow, it sounds like you have been through a lot, you poor thing. but it's great to hear that you still managed to get pregnant and that you are again! and it gives us other endo sufferers hope! best of luck x
_________________
Me 28 (have endo)
DH 38 (has low morphology)
TTC #1 since Nov 07
Surgery to remove endo Feb 09
Starting ICSI Aug 09
jomodo
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Posted: Sun May 10, 2009 1:52 pm 
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Thanks mimilo... I guess that I was really lucky in that initially, my tubes weren't too badly affected by the endometriosis.
I know that I used to get so frustrated with the condition... I had awful periods right from the very beginning. My first surgery was at 18... I'm now almost 38. I took so much time off work... my colleagues didn't understand (I worked in Healthcare BTW!)... they wrongly assumed that surgery would be the end of it and of course it wasn't! I was constantly faced with a barrage of questions... they just didn't understand that it was impossible to get rid of the endo completely. The only thing that I found worked for me was the Mirena IUD... it was a godsend! I had my first one removed just after I got married and conceived within 6 months.
I will keep my fingers crossed for you and wish you all the best of luck x
mimilo
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Posted: Sun May 10, 2009 9:45 pm 
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thanks jomodo, i'm glad it has worked out for you in the end. i had quite a lot of endo but luckily none on my reproductive organs. i didn't suffer as badly as you either, i just had an irritable tummy with lots of bloating and things and a very painful first day of each period and very heavy bleeding. but now, three months after surgery, i'm having my first totally pain free period! it's great. and my tummy is sooo much better too. only thing that remains is quite heavy bleeding. so both me and doc are happy with the surgery. but i still haven't managed to fall pregnant... but hubby has some sperm issues too so... we'll be doing ivf in august if no luck before then. all the best to you x
_________________
Me 28 (have endo)
DH 38 (has low morphology)
TTC #1 since Nov 07
Surgery to remove endo Feb 09
Starting ICSI Aug 09
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