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Thread: Endo specialist or IVF? Desperate to have a child.

  1. #19

    Default Endo and miscarriage,

    Hi everyone,
    I had endo removed three years ago since then I had three miscarriages (spontaneous pregnancy) my progesterone level is too low it doesn?t support the pregnancy. I am not a good responder to IVF treatment , I would like to know if anyone has the same problem.


  2. #20

    Join Date
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    Cival,

    Sweet there a a few of us that get low numbers great Assitaed conception threads for lost of q's

  3. #21
    Clover Guest

    Default

    Hi everyone

    I thought you might be interested in hearing about my recent experience with IVF.

    My endo background - I have had three laprosc surgeries for endo in the last five years - I get severe endo with adhesions and choc cysts (like others it took over 10 years to get a diagnosis so the endo - and its damage - was very advanced). I also have food allergies and intolerances, plus interstitial cystitis caused by the endo damage and stress to my system.

    Before I began my first IVF cycle all of the specialists acknowledged my endo was on the increase but more surgery was never discussed, I proceeded straight to the IVF drugs. This involved taking a drug called puregon that causes the follicles to grow on your ovaries, It is also not a great drug for endo patients to take - it is like fertiliser for weeds.

    A week after I stopped taking the puregon and about five days after the embryo transfer I was in increasing pain, nauseas and vomitting. This got significantly worse over the following week. To the point I was so toxic that the embryo had no chance of surviving - as I was later told by the specialist. My endo is now back with a vengence spurred on by the fertility drugs - all of the debilitating symptoms are back and I am dreading my next period. I am booked in for surgery at the end of the month for another clean out - thankfully I have a great endo specialist who specialises in surgical removal and this works (atleast in the short/medium term) for me. I don't respond to drugs.

    I now wish I had had the surgery before I went thru the IVF cycle. I would have got more eggs and the embryo would have had a better chance of implanting. I feel frustrated and saddened that I wasted a good quality embryo on my dodgy system. The IVF process wasn't horrible but it was exhausting. I have one embryo on ice and I want to give it its best chance.

    So my advice is get treated for the endo before commencing with IVF to give yourself the best chance of success. Also try alternative therapies - accupuncture prior to and during IVF is being promoted as being very beneficial. Plus it can ease endo symptoms.

    Also don't be afraid to get a second opinion on treatment. My first endo specialist did a half hearted surgery (didn't even suggest getting my damaged appendix removed) and prescribed drugs. I got a second opinion and it was the best thing I ever did. I can criticise the disease but not my treatment.

    I wish you all the best.

    Clover

  4. #22

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    HI Brisvegas - ive just been reading ur thread andi feel for you - a severe endo suferer myself. I have 3 major operations in a span of 18 months and was told to try adn fall preggers ASAP naturally even though they knew i couldnt. Put it this way i was in hospital at one stage for almost 3 weeks - it was bad. After my last operations last Feb 07 my GYN/OB placed me on synarel which bascially puts u into menapause - to be honest it was good apart from the hot flushes lol.... anyway this drug is also the starting process of IVF which i had to do. After being on this drug for 3 months i started IVF - its not than bad u just had to go in there with an open mind and no expectations (which is hard). It was especially difficult for my husband and myself as we lost a best friend to cancer (just b4 his 30th), i started a new job as did my husband. You do what u have to and its all an experience and what u make of it. I was very lucky though i fell preggers straight away, no complications throughout the pregnancy and have a beautiful 2 month old Joshua. I wish you all the best - lucky ur naturalpath remedies are working for u - it didnt for me nor did chinese medicine. If ur still trying to source a doctor - Dr Peter Illingsworth from IVF Australia Sydney is also very good. I actually went through Westmead hospital in Sydney which costed me nothing...but it is all expensive. Good luck i hope you get ur bundle of joy u deserve.

  5. #23

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    Hi Ladies,

    Thank you thank you thank you for sharing your stories and all of the support you are giving me and others who visit this thread. I was so dubious about these types of forums, but since being on them have felt so much better about it all. I think just knowing you are not alone helps so much. Also just talking about it.

    I am coming into the 3rd month of my course of chinese herbs and acupuncture. Firstly I have to say that anything to do with herbs must be given at least 3 months to work and be followed diligently if you want to see any results at all.

    I saw marginal results for the first 2 months, in fact a return of symptoms to an extent which got me down. On the 3rd month I am starting to feel hopeful. My BBT is starting to look normal, and I am ovulating strongly. My mucous has increased and the pain is lessening. I may not fall pregnant naturally after this, but at least I will be in a much better position for IVF should we need to go down that path.

    Some of the herbs I am taking cause miscarriage, so for that reason we have had to stop trying for a while, but my practitioner tells me that we are just about ready to start trying naturally again, based on the results. I see him weekly and he tailors the herbs and acupuncture accordingly, based on my symptoms, time of cycle and BBT.

    I've also been off wheat (about 90% of the time) for 3 months now and am less bloated and feel better in myself overall. So perhaps there is some kind of link to allergies/food intolerances and endo. However I have realised that my biggest issue is with stress in general and managing stress. The anti-stress herbs I have had to take are the ones that have had the best effect on everything - including my progesterone levels. So I've had to admit that to myself and work to find other ways to alleviate the stress and my response to stress. I believe that endo breeds on stress. I have been also doing a course of hypnotherapy to help with managing stress and am getting some good results.

    Stay tuned. I feel so positive right now, but we all go through those down times with this terrible affliction. It's like riding a wave.

    Best wishes to all of you who are undergoing treatment or about to. My thoughts are with you. Will you keep us all posted on how you get on?

    Big hugs xxxxxxxxx

  6. #24
    Tiffiny Guest

    Default Hello, everyone

    Hello, everyone

    This is Tiffiny, i just have laparoscopy to remove my endometriosis (moderate) by Dr Molloy in QFG, and i thought my realistic pregnant rate should be normal after the surgery, whlie Dr still recommend me to IUI two months after the surgery, is there anyone who has been conceived naturally after laparoscopy? i am 29 years old and my husband is the same age with me and his sperm count/ motility is good but percentage of abnormal sperm is a little bit higher than normal. we have been trying to conceive for more than one year.


    Thanks for your reply

  7. #25

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    Hi again,

    Well it has been almost 4 months on the chinese herbs and acupuncture. Was getting good results in terms of period symptoms decreasing and my progesterone levels increasing. Until this last cycle.

    I had a particularly stressful 2 weeks at work, was also going for another job, my parents were up visiting and we were trying to fall pregnant for the first time naturally in months. Well the stress was too much for me and guess what - I got severe endo symptoms again. Abdominal pain, IBS symptoms, nausea etc etc. I know it's come back.

    Now I feel despressed as I amy have wasted 4 months doing the natural thing when I could have gone down the IVF route instead. I feel like I am back to square one again.

    I want to go and see an OB/Gyno, but not sure if IVF is worth trying straight away or perhaps another clean out (10 months since my last one). God I hate those clean outs!!!

    Hope you are all well. Does anyone have any good news of late regarding their endo and fertility treatment? I'd love to hear it.

    xxxxxxxxxxxxx

  8. #26
    Clover Guest

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    Hi BrisVegas

    I am sorry to hear that all is not well - hang in there. Don't think of them as 4 wasted months - you tried something less intrusive than the options western medicine offered and you did get some relief from your symptoms. Keep moving forwards.

    My last couple of months also haven't exactly gone to plan. I ended up in severe pain and non-stop vomitting a few days after my last post and got carted off to the emergency room. They pumped me full of narcotics and fluids, 24 hours later I had the surgery - it was all over my bladder, bowel, tubes etc etc.

    The surgeon has recommended that I have a hysterectomy...but this doesn't exactly go with my IVF plans! I was a bit freaked about this option when it was first mentioned but now I see it as a good option for twelve or so months time. Given my period is a huge problem for me, apparently a hysterectomy will improve my general health and quality of life.

    But for now I am back in the IVF grind. I started ASAP after the surgery and will have the egg pick up and transfer next week. I don't get great results as one ovary no longer functions and the other is slow. So I am hoping for two eggs next week (had a scan today to show this) - I am booked for a double embryo transfer. Fortunately my eggs seem to be good (so far) and quality seems to be more important than quantity.

    This cycle is also going much better health wise since the surgery. I have been tired but not ill - fingers crossed that I stay this way.

    Good luck with what ever path you decide to follow. I will let you know how I get on - hopefully it is some good news!

    Hugs

    Clover

  9. #27

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    Bris Vegas sweetie have a good chat with the FS they will know what to do mine suggested 2 stims b4 we cleaned out again

  10. #28
    hannah6666 Guest

    Red face ICSI experiences in Perth

    Hi

    I am about to start an IVF cycle with ICSI and am in Perth (Fertility Specialisits of WA in Claremont). I was wondering if anyone had any experiences to share about the clinic or just in general.

    Also does anyone recommend taking time off work during the whole thing or staying at work.

    Also interested in seeing if people told their families before starting IVF?

  11. #29

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    Hi Clover and Tiggerlinda,

    Thank you so much for your replies ;-)

    Dear Clover - my goodness! My thoughts and hopes are with you. Never give up on the dream. You truly are a special person to go through all that you have.

    My sister in law gave birth to a beautiful baby girl today. The first grandchild in my husbands family. I try so hard to be upbeat, supportive and happy in these instances, although it is just so hard. Particularly when you hear that they fell on the first go. Is there a god? Really?

    I do find that the toughest part of being an endo sufferer trying to fall pregnant, being so positive and happy for those who fall so easily. And shouldering the dreams and disappointments of both my husband and I. Seeing the disappointment on my husbands face each month when it still isn't happening sometimes crushes me more.

    We keep the faith and soldier on another cycle in the hopes that this might just be the one!

    Thank you all so much for your support. This forum helps me more than you know.

    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  12. #30
    Clover Guest

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    Hi Brisvegas - I have good news - I had two eggs picked up yesterday and this morning was told that both have fertilised. Yay!!! I am having both transferred tomorrow (Yes twins freak me out, but two is better than none).

    Hopefully the surgical clean out I had gives me a good chance of one of the embryos sticking. The 2ww begins tomorrow.

    Have you decided what path you are going to follow?

    Hannah - Good luck with your cycle. I have worked full time during my ICSI cycle, taking time off only for the EPU and ET. I have been very tired so social activities have stopped. I told my friends and family so they understood what I was going thru. However if my job was stressful I would have taken more leave.

  13. #31

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    Clover :goodluck2: hopefully this is it and no more need for another cycle

  14. #32

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    Oh Clover - that is all really positive. I am so hoping that it all works out for you. How fantastic.

    Tiggerlinda - let us all know how you get on too.

    I have been getting tests done to figure out why I am getting nasty reflux and nausea for the past 3 weeks. Getting the camera down the throat on Wednesday (groan). At least it can rule out any nasty's or other complications.

    Have also booked into see Dr Lindstrom in Brissy. Can't get in until late August. She deals with both infertility and IVF.

    We are putting off buying a house until we figure out how much this little journey to have a baby will cost us.........

    Have a nice, relaxing weekend everybody. I'm sending you lots of pink energy to fill you full of positive energy.

    xxxxxxxxxxxxxxx

  15. #33

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    Update:
    We have had 6 eggs at pick up and 5 fertilise over night hoping 6 times lucky

    Julie Lindstrom is at my Clinic at City IVF heard she is very good the team are fantsatic there

    for us all

  16. #34
    Clover Guest

    Default

    Hi everyone

    Tiggerlinda - have you had your ET yet?I am sending you baby dust and sticky vibes

    Brisvegas - how are you feeling? Nausea and vomitting is one of my big symptoms so my thought are with you!

    Writing this has just reminded me of a diagnosis that hugely improved my pain symptoms and nausea about 18 months ago - it is the norm in my daily routine so I don't give it much thought. I was getting a painful spasm in my belly - it caused vomitting and at its worse I started to go grey and black out particularly after I ate (my poor Mum was with me when it first happened). It took about 6 months to be diagnosed as interstitial cystis due to the damage the endo had doen to the outer muscle of my bladder. The solution was quite simple - 10mg of Endep (neurological inhibitor - stops pain messages getting to my brain) and 20-40mg Nexium (reflux meds) every night. I felt better within weeks - if I stop the meds i have nausea/vomitting when I have my AF.

    There is a down side - weight gain - but hey I generally feel a lot better. Apparently endep is given to anorexic patients as it helps with weight gain - I found this out later.

    Oh - Brisvegas - keep in mind that IVF costs are medicare costs not private health fund (well not mine anyway). The good news is that your first cycle will result in you hitting the medicare threshold and once there you get 80% of your out of pocket costs back. At my clinic you pay the medicare gap up front (about $2200) then at the end of your cycle they send you the tax invoice you use to claim the 80% from medicare. So this cycle has cost me about $450 plus about $110 for a drug. The medicare threshold is per calender year - so if you need more than one cycle you want them in the same calender year to reduce costs. I hope this helps with the $ thoughts.

    Yes I have rambled on - trying to keep busy and not think about the 2ww - stick stick stick baby(s)!!

    Hugs Clover

  17. #35

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    Clover good luck with the TWW
    Yes we have had transfer 2 embies

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