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  1. #1
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    Default Severe endometriosis and ivf - any success?

    Hi ladies

    I have severe endo and DH and I are starting ivf. We're wondering if anyone who has had/has severe endo has managed to conceive naturally or via ivf?

    I had a laparoscopy 12 months ago where they had to do a bowel and bladder resection, remove cysts in both ovaries and they found one or both fallopian tubes may be blocked despite the lap. After ttc naturally for 12 mths after the lap as recommended by the doctors without success DH & I are starting ivf. However, I've just recently been advised that the endo has grown back (which is within 12 mths of the lap) as they found endo on my right ovary during ultrasounds for ivf. I've also just been advised that I have low egg reserve because of the endo (so I don't produce many eggs for ivf) and my right ovary may be too damaged from endo to produce any eggs.

    All the negative findings has really dampened my spirits and now I'm hesitant to believe that ivf (our last resort) would succeed for DH & I.

    Are there any women out there who has managed to conceive in spite of severe endo? I'm hoping to find some inspiration to continue hoping.

    Thanks ladies!

  2. #2
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    hi

    i have endo, had one lap back in 2007, didnt know at the time how it could badly affect egg reserve etc so it was quite disheartening to go thru several cycles with little or no response. mine was never "graded" so to speak and dont think it was all over but definately in the ovaries hence the low egg reserve..however some ppl still seem to get quite good egg numbers, it seems a bit hit and miss. anyway after i got on the right cycle and drugs (dhea for low reserve..my amh in 2009 was 4.0), i had a DS on our 8th stim and now pg again...so yep u get all the bad news about endo and poor response to the drugs BUT most ppl i know did get there..it does seem to give lower egg numbers mostly. the first cycle is trial and error so u just dont know how u will respond...did u get your amh tested recently as u said u had low egg reserve? i know ppl with endo who got a bfp first go and others who took a while...u just dont know . good luck.

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    Nibblerbunny (16-09-2011)

  4. #3
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    Hi there,

    I'm another one with endo. I had a couple of laps in my early 20s then was placed on medication to stop AF (and the spread of endo). Then when we wanted to conceive (after trying for 6 months or so naturally - not a long time but we knew it just wouldn't happen) the FS did another lap (a really full-on one) and he wanted us to start straight away on IVF. However I wanted to go the OI and IUI route first. Well I started taking Clomid, the blood tests told me I hadn't ovulated so we didn't do IUI, was told to start IVF in a month or so...then had a BFP anyway! I am VERY lucky and the FS was as shocked as I am. However, I must say that my fallopian tubes have always been pretty clear but my ovaries (and other places like my bowel) were covered. I don't think I'll be so lucky next time.

    Another thing in my favour too is that my endo was picked up years before I started trying to conceive (because of severe pain and general misery!) A lot of ladies only discover they have endo when they start trying for a family and by then damage has been done.

    I'm surprised they suggested you try naturally for a year even though your endo is severe. Did that mean no OI or IUI at all?

    I want to wish you and your DH the best of luck for your IVF journey.

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    Nibblerbunny (16-09-2011)

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    Hi, I also have severe endo. I was diagnosed at 23 and now, at 32 I've had 7 laparoscopies and one laparotomy to clean it up. I've had one ovary and both tubes removed and several cysts removed from my remaining ovary; all before starting IVF. We started ttc when I was 29 and now, after 8 stim cycles, we have a beautiful 7 week old baby girl. We never had any embryos to freeze and in three of our cycles, they weren't even able to retrieve any eggs during the epu. On the 6th cycle, I got a positive but sadly miscarried. I was told it was because my eggs are poor quality. But, and you'll hear this over and over again, it only takes one good egg to get your baby. On our eighth cycle, only one egg was retrieved at epu and she's now sleeping beside me in her bassinet. Stay positive. IVF isn't easy emotionally or physically but it's all worth it when you're successful - and I'm sure you will be!!

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    Nibblerbunny (16-09-2011)

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    Bronsie. Wow your story has touched me! You are an amazing woman to be strong after so many cycles!

    Just wanted to say congrats!!
    X

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    Thanks ladies for sharing your stories and your well wishes! your stories really give me hope.

    jfblady72 - yes I did just get my AMH test results and I found out just after my EPU cause the results came back while my FS was on leave ...it wasn't good news, it was a 7 which the dr says is low given my age (30) which explained why they only retrieved 2 eggies. Also not the news you want to hear just coming out of sedation but I tried to stay positive. We had 1 fertilised and we've just had the ET so fingers crossed

    sammy11 - I was surprised too when my endo dr recommended we try for 12 months first given he said I was the worst case he'd seen in many years. He said in spite of that he couldn't see why we couldn't conceive naturally now the 'endo is cleared' but then he never recommended we do more tests or see a FS. Thinking back to it, I'm not sure whether he really believed his own words or it was because he wanted to prop up his stats...he was proud of his figures of how many couples conceived naturally after laps he did. (he wasn't a bad dr and I'm sure most other women were lucky, only I was an exception to that stat) Any way, I questioned his advice and DH and I went to see an ivf FS 7 months after the lap and we had intended to do ivf the next month after that but a couple of bad luck episodes (illnesses, deaths in family etc) happened and I finally had a breakdown from all the fertility and other stress. But now I've picked myself up again and we're finally going through ivf.

    Bronsie - thanks so much for sharing your story and I'm so happy you finally got your precious little bub You're such an inspiration! and you've certainly made me feel hopeful again

    Nibblerbunny xx

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    Hi, Just thought i would add my story here whilst i am still going through my journey I think it may be useful for other people to hear......

    I was diagnosed with severe Endo at the age of 36 after undergoing a lap due to infertility. My FS decided against doing any further surgery as he felt it was too severe. As it was on my ovaries he was worried that trying to remove it would reduce my egg quantity. He recommended going straight to IVF. I was shocked - as i had no idea I had endo. I received a second opinion who also said go straight to IVF due to my age (wait time for surgery, healing etc).

    My AMH was at 13 (which was slighly below where i should be for my age) but still quite good. Anyway I did one stim cycle and got 11 eggs - 6 fertilised and 3 made it to 5 day blast stage, which was fantastic. The transfer ended up a BFN (2 weeks ago) but i have 2 left for FET.

    I kept asking my FS about how endo will affect IVF chances and he seems quite confident. My FS was happy with my stim cycle, I responded well to the meds at a small dose (Gonal F150) and retreived more eggs than what he thought i would get. But you will never know until it happens.

    Sometimes I am real confident that it will be ok and then other times i think i am at the beginning of a really long journey. I wish i had a crystal ball!

    Anyway i would love to hear from other people who have severe endo success or otherwise.

    Thanks

  11. #8
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    Hi Indigored75! Thanks for joining the thread

    I think the stories above, particularly from bronsie, really give us endo girls some hope. Plus you have a pretty good egg reserve which seems to be a big issue for endo sufferers (I only have an AMH of 7 and I'm only 30) so I have a lot of faith that you will go really well with ivf

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    Hi

    I wanted to post an update to this thread. Whenever i used to search for posts on endometrosis i always wished i could find out what happened to folks on the same stressful journey.

    Anyway i ended up getting a BFP from a frozen transfer in Oct 2011. I had my 12 week scan yesterday and it all looks on track so far. It kind of hasn't really hit home as yet - i guess cause my FS told me miscarriage rates can be as high as 25% so i was just taking it day by day.

    I still have a long way to go but the point of this post is for those ladies with severe endo and going down the IVF path - it can happen!!

    Good Luck to everyone. I hope you get your BFP soon.

    Take care

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  14. #10
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    Hi Nibbler

    I could of writtern this post myself, a few years back. I was diagnosed in 2005 with severe endometriosis. I had grade 4 so top of the top worst of the worst. I underwent 5 operations 3 of them major. Like yourself one involving the bladder, and a bowel resection - 20 cm. It was everywhere. My last op was in 2007 and then my DH and I took time out from TTC as mentally and physcially I was exhausted from surgery after surgery .. in 2009 I underwent IVF and was very blessed to conceive our daugher who was born in May 2010. I put most of my success down to my endo surgeon Prof Micheal Cooper in Sydney and our IVF doctor Warren De Ambrosis in Brisbane. Its so hard having to undergo all those ops and then IVF ontop of everything else. Hang in there and do what you can to give yourself the best chance. I'm living proof that the worst of the worst can make it

    PM me if you need to chat - I know exactly how you feel xo PS check Prof Michael Coopers website it is seriously informative and he blogs reguarly on research and IVF


 

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