Saturday, March 11, 2017

New doctor, new hope?

If you've been following our 'maybe baby' journey you might recall that I'd nicknamed our old doctor "Dr. Direct" due to his straight talking attitude. "Dr. Gentle" is the second doctor at the clinic who we only occasionally saw but seemed to have more empathy and was softly spoken. The first nickname that came to me about our doctor at the new fertility center was "Dr. Peppy"! She just seemed full of energy. Hubby commented afterwards she's probably a type A personality. She was nice and made a good impression. I think it will be easier if I use bullet points to sum up some of the main things from our appointment;

  • She said we have done and tried everything already by now apart from me getting a uterine biopsy done. This is where they take a sample of your tissue and then you can have it tested for natural killer cells and/or plasma cells. If I have NK cells in my womb then the only way to treat it is to get the Intralipids infusions which I'm getting anyway for high NK cells in my blood so the doctor said there is no need to check for that. However if I were to have plasma cells, which seems to be some kind of infection then I'd need to take antibiotics for four weeks to get rid of it! She said it is unlikely that I have it but it would make sense to rule it out. The decision is up to us though. According to an information sheet she gave us, among couples with several failed IVFs/miscarriages behind them, between 10-20% of women in that group are found to have this issue. The whole thing would cost around 300€ out of pocket.

  • She wouldn't suggest natural or mini IVF in our case. The follicles can be empty or contain immature eggs and it is often a wasted cycle. Since my health insurance will partially (50%) cover one more IVF it makes sense to do another full round. She discussed two possible stimulation protocols I could try. Her preferred one for me would be the long protocol. Around day 20 of my cycle I'd go there for a scan to make sure there are no cysts, then I'd use a special nose spray morning and night for about two weeks to down-regulate. Then your period comes and she said at this stage your hormones are at null and you then start to build them up from scratch with the injections. I'd have to go for two ultrasounds during the injection phase and then the egg retrieval would be around two weeks later. She recommends that protocol since I haven't tried it before and it *might* lead to them getting more eggs from me at the collection (no guarantees of course). She's seen it help some poor responders in the past.

  • She recommended I should do the whole immune therapy stuff again. When I'd go in on day 20 for the ultrasound I would get the first Intralipid infusion done there, then the second one at egg retrieval stage and then third would be if I get a positive pregnancy test then every two weeks in first trimester. I'd also take the low dose steroids again after transfer plus the extra Granocyte injections. She acknowledged that those are a pain as they are expensive and not covered by health insurance (none of the immune therapy is). Last time we had to order the Granocyte meds from France since they are about 200€ cheaper there. Think it cost about 400€ for just five of those injections nonetheless! However if the Granocyte reduces my miscarriage risk of course I've no problem with it.

  • She discussed some "extras" we could consider. For instance there is something called Assisted Hatching. This is where they use a laser to cut a tiny opening in the shell of the embryo to help it to get out better. We never went for it before as we just thought it sounded too artificial and that the embryo should be able to get out by itself! Hubby still thinks it's a waste of money but I'm conflicted about it now. I have read that when several IVFs have failed that it *could* help. It's so hard to know with these things. At some point when going through IVF you do end up thinking what's another 200-300€ in the long run since we've already spent so much on this and I want to give it our best shot. On the other hand I don't want us to waste our money on these unproven things. For our first round we paid extra for a thing called Embryo Glue. That isn't even offered at this clinic making me think it can't be so good after all!


  • She talked about whether we'd want to let the embryos grow to day 5 this time. It would be a good idea if we were to have at least four but otherwise it could be a bit risky if we only have a few embryos. There is a theory that some embryos that don't survive in the lab might have lasted longer had they been transferred into the womb sooner.

  • I'll mention here that PGS testing (genetic pre testing of embryos) isn't allowed in Germany unfortunately. ERA receptive testing which ecofeminist talks a lot about the importance of isn't available here either! You'd have to go to Spain for it we were told.

  • The doctor wanted to take a blood sample in order to test my AMH and thyroid levels. When she phones me in two weeks with the results, then I can tell her if I have decided to do the uterine biopsy and if so make an appointment for it. She also wanted me to get a booster vaccine for polio & typhoid etc which I was also able to get there and then which was handy though it did give me a sore upper arm for days after!

  • She said that yes some women do need to get their fallopian tube removed when it is blocked as sometimes the liquid inside it can drip down and cause a hostile environment. That was something I was worrying about recently. She gave me an ultrasound there and then to have a look but luckily my right tube, the blocked one, though slightly bumpy/bigger than it should be is not bad enough to require surgery to remove it

  • We asked about our chances of trying naturally. Her answer was a little vague, along the lines of never say never but chances are very low. When there has been surgery or infection around the fallopian tubes then the tiny little hairs inside them can become stiffer making it very difficult for sperm/eggs to travel through them.

  • I commented about how our embryos were great quality last time, plus I had done all the immune stuff and it still didn't work! She replied that even if everything is perfect, IVF still only has a 30-40% chance of working each time.

  • In terms of supplements which I asked about, she said I could try taking 25mg of DHEA until IVF starts or I could take melatonin since both do more or less the same thing in terms of improving egg quality.

  • We have a fair bit of paperwork to get sorted first if we want to change clinics. My health insurance approval is tied to the other place so we would have to reapply for approval. There is a requirement for couples doing IVF to get tested for HIV and hepatitis which we've already done so we'll need to ask our clinic for a printout of results. Also a different doctor not associated with a fertility clinic has to talk to any couple in Germany considering IVF about their options and tell them about the risks associated with IVF. We already had that talk ages ago but need to find the signed form otherwise we'll need to do it again.

  • My gynecologist in the town where I live had offered that he could do some ultrasounds for me so that I wouldn't need to travel back and forth to the new clinic. However Dr. Peppy said that's not possible as they'd want to scan me themselves. Since I'm still not comfortable driving in Germany (haven't had enough experience here yet), I'll have to get public transport to reach the new clinic. It takes about 75 mins each way. It's not ideal obviously but I could catch up on my reading and try to get appointments that are either very early or late to work around my job or even take some half days off. It should be manageable.


Overall the appointment went well. That said, I left feeling very overwhelmed about it all and needed a day to get my thoughts straight. Hubby was a bit cynical saying of course they say we should do another round with them as they want the money and didn't feel convinced that anyone in the industry gives you unbiased advice. We had some differences of opinion on how to proceed but we are on the same page now. We've both agreed that we'll go for a fourth (and final IVF) at this new clinic.

I spent a few hours reading up about DHEA supplements and ended up totally confused about whether they would help me or not! On the one hand some studies have shown very positive effects for poor responders who take them. However I've also read studies disputing that. Some women on message boards talk about how they had much better IVF results after taking DHEA but then I read others saying it messed up their IVF and it was a wasted cycle! On top of that it can affect your thyroid and immune system apparently which concerns me since I already have immune and thyroid issues. I'm still on the fence. Melatonin has shown some promising results.

Something I did decide to order is Serrapetase. It's an enzyme found in silkworms and it's meant to dissolve old tissue in your body so it has even helped some women unblock their fallopian tubes and get rid of adhesions apparently! The doctor hadn't heard of it and it hasn't been clinically proven but I read through hundreds of reviews from people who bought the tablets and the majority were very positive. A few did mention it caused stomach upset so hopefully I won't be one of the unlucky ones with bad side effects. I've figured it's worth a try.

I an feeling quite overwhelmed at the thought of going through IVF again. I'm painfully well aware that just because we are trying a new protocol there is no guarantee that my body will respond better to it and grow more eggs so that's a concern! During the second round of IVF the doctor tried me on new meds and I only ended up getting one egg at the retrieval, my worst round. It was incredibly disappointing really. I've read online that poor responders generally have worse success rates than average. Even if I do get pregnant I'm anxious about having a another miscarriage. Hubby also commented that we could go through so much only to find out that something is wrong with the baby. It probably sounds like these are all very negative thoughts but I think we are just being realistic at this stage. We could be one of those couples that IVF just doesn't work for.

All that said, I am still hopeful. Sometimes I allow myself to fantasize about what it would be like to go to the doctor for a pregnancy ultrasound with my husband and see our baby moving around on screen, or how wonderful it would be to have our baby or babies growing inside me for nine months. I also imagine how amazing it would be having our child actually here with us! I'd love to bring him/her to trips to Ireland with me and there are so many people among our family and friends who would also have so much love for our potential offspring. I still hope and pray that this is something we will get to experience. However if it doesn't work out this Summer with our fourth IVF attempt, at least we'll know we gave it our best shot and be able to move forward without regrets.

28 comments:

  1. I feel like our experiences have been very similar, several doctors , several protocols including immune, and 4 IVF cycles, I'm also I poor responder. I believe you follow me over at Notbreedingintheburbs.com so you know that I'm currently pregnant from our 4th cycle where we only retrieved 2 eggs, as they say it only takes one! I would say don't worry too much about The amount of eggs you get but the quality which it sounds like you have had good quality embryos before. It's still really early for us we haven't even had or first ultrasound yet and I'm terrified and literally just taking it day by day. This was our last IVF attempt with my eggs and I just keep thinking what if we hadn't tried one more time? Sometimes one more time turns out to be THE time! I'm hoping all of your preparations leading up to this next cycle help make the difference I recommend the melatonin I used it myself and I think it increased our quality and the added benefit of a great nights sleep every night during an anxious time was worth it! I will be thinking positive thoughts for you!

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    1. Yes I'm following your blog too! Tried to comment recently and wasn't able to as it said I was a "suspected bot"! Really hoping your first ultrasound goes well. Thinking of you today. Hearing your story has also given me hope as another poor responder! A friend of mine used melatonin also on the cycled that worked for her so I'm planning to take it from the start of injections. Plus coq10 and DHEA. Hopefully we'll get at least one good embryo next time!

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  2. It is a lot to take in, no wonder it makes you feel overwhelmed. One step at a time. In my experience it can be good having a break between ivf cycles, enjoying the spring and other things in life, even though you cannot forget about the upcoming cycle, I think it can do you good.

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    1. Thanks Nora! I also find taking things one step at a time makes it more bearable and feel somewhat less overwhelming. Having this break now has been doing me good

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  3. That is a LOT of information! Not surprised you feel overwhelmed.

    I can kind of see where your husband is coming from saying of course every clinic wants you to spend your money there, but my doctor in Switzerland has said he still thinks we should be able to conceive on our own and if the remaining tests show nothing he will diagnose unexplained infertility, but we should still try naturally for at least another year before moving on to treatment. If he wanted our money he could easily suggest moving on immediately (especially since insurance here doesn't cover IVF at all, so if it comes to that it will be ALL our money!)

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    1. Oh that's really annoying that ur insurance in Switzerland wouldn't cover IVF. I'm hoping you won't need it though. I remember reading that some couples just take 18 months or even two years so I also wasn't in a hurry to start IVF even though in my case I have a blocked tube so it was less likely to happen naturally. If all your tests come back fine that's great.

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  4. Wow, that's quite overwhelming. The ERA thing doesn't exist in Japan, at least that I know off.

    I'm currently on a diet that includes lots of raw greens. Raw spinach is recommended for estrogen dominance which I think has plagued me a lot. To my surprise, the effect on my cycle and health have been quite fast. Guess Popeye the Sailor Man knew what he was talking about!

    I take a natto vitamin, coQ10, and DHEA as well. I don't know which ones if any are having an effect, but since I've done them my numbers have improved a lot. I feel better.

    I read that it takes 3 months to affect the quality of the egg, and I think that's been true from what I've seen in my own body.

    My husband was also concerned about clinics pushing the IVF train for money.

    IVF never worked well for me. I always responded poorly. But I hope it brings you the pitter patter of little feet and the happy giggle of your child.

    I want to read about your wonderful adventures as a mother one day. :)

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    1. That's great you've seen positive effects after eating more raw greens such as spinach. I definitely think the food element is largely under-looked. I've gone gluten free and am trying to eat less dairy, sugar and processed foods. I'm hoping it'll help reduce my elevated NK cells, but I've also just feeling better in general so that has to be a good thing! After reading a lot on DHEA I've decided to try it for two months, as well as coq10. Thanks, you're so sweet, I also hope we both get to experience motherhood!

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    2. ERA is available internationally and I read on Igenomix's website they're opening a lab in Japan this year. Your doc just has to call them and sign up - RE's just do the biopsy and mail the sample to Igenomix who does the testing...

      Dubliner - why can't your new doc just mail the biopsy tissue to Igenomix in Spain?

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    3. Not sure, the doctor just said they only do it in Spain. I can ask her about it again to see if that might be possible

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  5. Wow, you take lots of detailed notes, which is great. I feel like writing it all down gives you some sense of control and definitely allows you to be a better advocate for your care. That's a lot of information. I am so hopeful for you. I can tell you that I had never heard of Embryo Glue before I read "Avalanche," but I did Assisted Hatching on all my transfers after the first two, and it seems pretty commonplace here in New York. That one made sense to me because I was told that as your eggs get older, the shell can be tougher to break out of on its own, and assisted hatching just gives a bit of a leg up on things. I think they can only do that on blasts though, from what I remembered unless they have changed things since I did it (which is SO possible as technology just keeps flying forward). I hope you can make sense of everything to find the protocol and plan that works best for you and feel good about this fourth cycle, hopefully the one that puts you on a different leg of this journey.

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    1. Yea it was a lot of information at once, very overwhelming! But I'm happy to have a plan again and be moving forward. Yeah, I remember reading reviews of Avalanche on various blogs and I could relate to the pressure from clinics she mentioned to pay for unproven extras! That's interesting that assisted hatching is so common there. I'm going to try to read more studies on it and try to decide if it makes sense in our case. At this stage it's very tempting to do everything possible, though I also don't want to end up broke and babyless at the end of this! I mainly feel good about my clinic though and I like the new doctor which is great.

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  6. Some scattered thoughts:

    -You're going to love serrapeptase if you have a history of menstrual cramps. My dose is 120,000 SPU twice a day, so a total of 240,000 SPU a day. That's the dose that eliminated my menstrual cramps. It's amazing stuff. Which brand did you buy? I got mine from Amazon and the brand is "Doctor's Best."

    -I didn't know they can see the shape size of a fallopian tube during the ultrasound. Interesting.

    -I'm so jealous you don't drive. I live in a state where you have to have a car. I miss public transport. :)

    -Can you post your past protocols? What dose of Follistim/Gonal-F (bioidentical FSH) were you taking? Menopur (synthetic LH/FSH)? Was there an antagonist such as lupron, ganirelix, or birth control pill? With an AMH of 1.13 (which is really good), I just find it so hard to believe the response you had. Especially for being 34. But then again, I had the same response at the same time (was your second IVF in May 2016?). Like I said earlier our histories are very similar we could be twins! I digress. Were you on low doses of stim meds? I was on 150 IU of Follistim and one vial of Menopur. I stimmed for 8 days I believe. If you don't mind sharing, doses and protocol information would be very helpful.

    -I didn't know the hairs inside f. tubes can be stiff due to surgery or ectopics.

    -I really think you need to get your entire thyroid function evaluated. I say this to everyone because I am a thyroid advocate. :) We need to know what your T3 is. Do you also have Hashimoto's Thyroiditis (when the immune system attacks the thyroid gland)?

    -Yes, go for a Day 5 transfer. I didn't know that embryos in the lab do better in the womb. What days were your previous transfers? I had one lead follicle for IVF #2 and it was cancelled. No transfer. IVF #3 we had a 72-hour transfer because doc didn't think the embryos would make it. They had to use ICSI and maybe they did assisted hatching. I don't remember about assisted hatching.

    -yeah, I hear REs nickel and dime for ICSI and assisted hatching. Both came with the IVF package we bought.

    -Have you considered getting IVF in America? CNY in Syracuse, NY offers the cheapest IVF in the country, maybe in the world? I have two acquaintances from my support group that went to CNY for IVF. https://www.cnyfertility.com/financial/. One cycle is $3900 (I looked it up and Euro and US are almost 1:1).

    -What has been your AFC for IVFS #1-3? Mine was 7-9 for IVF #2. IVF #1 I never made it to stims because my TSH was 21.

    -There's always hope to conceive naturally!

    -I'm praying for us! Be encouraged!

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    1. That's a lot of questions :) The serrapetase is from a brand called Natures aid that I got from amazon.co.uk as I couldn't seem to find it here. It's 80,000iu per capsule and it says you can take up to three a day which would be the amount you take then. That's cool you have noticed positive benefits!
      In Germany public transport is really good so that you actually don't need a car! It does mean my driving has gotten really rusty though since I rarely drive these days.
      The immune specialist I went too said she didn't find any markers for any autoimmune conditions, though my NKcells were elevated. I'll send you an email with my full thyroid values.
      If I was going to travel abroad for IVF then I've heard Prague offers good value deals and can be combined with a holiday. If our 4th round doesn't work though we are considering stopping treatment at that stage.
      What does AFC stand for?
      Thanks for your prayers and support! I'm hopeful for us both too

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    2. Antral follicle count. The first baseline scan before stims starts.

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    3. ah I see. Mine was 10. So initially my doctor said he was expecting to get around ten eggs from me.

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  7. Wow, a lot of information and decisions to make. If I were you, I would probably try everything they can offer at this point. Also because your insurance covers part of the cycle. But I understand those decisions are hard to make and cost is always a concern. Good luck

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    1. Yeah we've decided to go for a 4th full IVF since my insurance will help and may as well give myself the best chance! It is hard deciding on which extras to get as these all cost extra. Like you say on the one hand it's tempting to throw everything at this, on the other of course the costs are also a concern. Thanks for your support!

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  8. Hey dear. Sorry I haven't been very active recent but wanted to day that I'm still following along. I used melatonin on my third round and I think it might have helped, plus it also helped my sleep. I took it just before bed and did meditation. I know its so hard as you get more and more information. Take some time to reflect and speak to a few different clinics before making a final decision. Sending hugs. XXX

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    1. I've been hearing more and more good things about melatonin! Definitely going to try adding it next round. Thanks for the hugs. I'm looking forward to your next update. Really hoping it will be with positive news! xx

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  9. There is so much to consider, it makes my head spin! I hope you are able to break it down into more consumable chunks and figure it out. It seems like you have to become moderately educated in the medical field just to understand it all! Best of luck to you! Fingers crossed the 4th time is the charm!

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    1. Oh yes I've had to read up on so much to try to make sure we are choosing the best treatment! And then of course what works for one person might not work for someone else. There are still so many unknowns. Thanks so much for your support!

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  10. Your RE gave you a lot of options. On one hand, it's good to know you have them, and to feel some control. On the other hand, making pivotal decisions about your final IVF is hard.
    For egg quality I have seen my friend My Hope Jar have great success with 400mg Ubiquinol and 1000mg Royal Jelly (she has DOR, 8 miscarriages and several failed IVF). I was impressed with her results so I took these supplements after many months of failed heavily medicated cycles, and then conceived BG. Coincidence? Maybe, but I think not. XOXO

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    1. Yea it's so hard when the doctor leaves big decisions up to us because I know that if it fails I'll think we made the wrong choice! I'm taking coq10 and planning to add DHEA for this cycle. That's interesting that you and your friend had good experiences with Royal Jelly. I'll read up more and think it. I just caught up with your latest post by the way and I'm delighted to read about how great you've been feeling lately and that your results were good! Yay xx

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  11. It is amazing to hear that you are having a much more positive experience in leading up to your new cycle. I have a few thoughts (take them for what they are worth). I did dhea 25 mg three times a day. I had 8 eggs our first round and 11 mature the second. SO minimal increase, but that being said it was 3 more eggs (I have low AMH so I am not a poor responder but a low reserve which means higher doses of stims and less eggs). I fully recommend the biopsy. Not only will it be good for ruling out things, but I read studies that say it helps with implantation by up to 20 percent. We used it on our second round where we did get pregnant (but miscarried due to blighted ovum). As far as the hatching, I say that is up to you. Not all clinics offer it. I would say I wouldn't do it. But plenty of people have gotten pregnant using it in my Facebook support group.
    I hope that everything goes well with you this cycle. Sticky baby dust!

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    1. Thanks for your comment and support! If DHEA helps me even get a few more eggs that would be great. It's amazing how a scratch on the womb can help so much! I went ahead and got the biopsy done and am waiting on the results now. Yeah, I still have mixed feelings about the assisted hatching. I'm sorry your journey has been so difficult too.

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  12. That is a LOT of information from one appointment! IVF can be so overwhelming. I took DHEA before my 3rd cycle. My acupuncturist suggested it. Doc said it can't hurt, but didn't want me taking it during stimulation. Who knows, we ended up getting 2 blastocysts from that cycle (our best), and one didn't pass PGS and the other was a fail after transfer. Ugh. But I'm all for trying something new if you feel good about it :) Hope, hope, hoping this cycle is the one!

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    1. yeah my doctor was the same. I asked if I could take DHEA and she agreed but only until the start of the injections. Thanks for the good wishes. I'm crossing my fingers and sending you positive vibes for your two week wait!

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