***warning in case any triggers I don't know about lol***Hi! I have been a lurker for a long time and finally decided it was time to post

My husband and I have been trying for a child for 3 years now. And finally went to IVF last Oct. I have severe Endo, which has one blocked tube, and massive endo cysts on both ovaries. I did a surgery to clear some of it up back in 2014 but of course it comes back

. The Husband is issues as well with low count and funky shaped heads on his little swimmers

We just got word yesterday that our second round of IVF failed. SO I'm looking for others with Endo to get ideas on what might be possibilities to try next time or to discuss with the doctor about.
Here is how our last two times have gone just for a reference.
Round #1150 IU Menopur
300 IU Bravelle
Normal IVF oral drugs including a Thyroid med since the blood results came back at 6
5 Folicles gave us 3 eggs
2 fertilized at were of A quality and both went in at once for a fresh transfer
Tested Neg 2 weeks later
Round #2150 Menopur
450 Bravelle
600mg CoQ10 3x a day
25mg DHEA 3x a day
Uterus scratching before hand
10+ Follicles gave us 7 eggs
7 fertilized and the two that went in were of A and B+ quality
for a fresh transferAssisted hatching was used on both
1 frozen egg left over (yay!)
Tested Neg 2 weeks later
I feel like we did SO much extra and good stuff this time around but the results were the same in the end. So now I'm wondering about what can maybe be done about the Endometriosis and if that is the possible issue. Appt with our Doctor is next Tues to look at next plan of attack. I haven't had enough eggs to do a frozen transfer, so I'm excited about no shots this time around
Re: Endometriosis and IVF People
Married Jan. 2014
Me:36 DH: 39
TTC since August 2014, Mild PCOS + uterine fibroids
Myomectomy June 2015- 18 fibroids removed
IVF #1, May 2016 = 32 eggs retrieved, 12 fertilized, 7 frozen, 3 PGS normal
FET#2, July 2016 = one embryo transferred
TRIGGER
BFP! Beta = 617
Due date = 4/9/17
Delivery date = 3/20/17
I've done 1 fresh and 1 frozen IVF in the past, both unsuccessful. What I'm doing differently this time:
Intralipid Therapy
Ubiquinol and Resveratrol supplements leading up to help with egg quality
I'm more strict on my endo/anti-inflammatory diet this time around
Plan on doing acupuncture more regularly and throughout IVF process (even though extra needles seems like torture)
Unfortunately there's not much specific to Endo as there's so much still unknown about it. Surgery is of course one avenue that could increase chances for success, and you've done that already...
*edited* - I'm silly... you did the scratch last time I'll leave this for ppl wondering though *edited end*
The only other thing I've heard of is a uterine "scratch" - where they scrape the uterine lining. The hope here is that it aids implantation for whatever reason. Been a while since I read up on it. That being said, I did have a uterine biopsy last month (so kind of the same idea) but maybe not quite as intense... not sure.
PGS is certainly an option, but we can't financially afford it personally, so not necessarily accessible for everyone...
Started TTC April 2011
Me: 32, DH: 32
Diagnosis: Endometriosis
- - -
I'm a YouTube vlogger who talks about Infertility, IVF and Endometriosis. Check it out here!
Follow along at http://liv4today.blog
Instagram @liv4todayvlog
PGS testing in interesting but I believe the Program we are on does not allow it. I'll have to double check. I know our clinic can do PGS, and I have that one frozen egg left. I'll ask on Tues
Intralipid Therapy is VERY interesting. Those stupid Killer T Cells are what always worry me. They just seem to kill everything. So this will be asked about for sure
I could think about my diet a little more DURING the process as well. I have been on crazy diets to get my BMI as low as possible (I need to be a 33 BMI for the program), but I always stop those about a week before Stims, since it is such a low Calorie diet but they are also very friendly for keeping Endo at bay. But I eat whatever during the stims since it is comforting lol
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Considering you only have 1 egg left, I would just go ahead and transfer and not bother with PGS this time around. If you are unsuccessful and choose to do another round, then perhaps PGS is something you could look into. That's just my opinion though...
I totally understand trying to keep stress at bay during stimms. That's why last time I did the same by being semi-relaxed on diet (and avoiding acupuncture). Adding yet another thing to worry about during such a stressful time feels overwhelming...
But having focused the last few years on my diet while I was "not trying" I've seen an INSANE difference in my overall health and wellbeing. I cut out wheat and eggs completely, and dairy almost entirely (the odd sprinkling of cheese here and there to keep me happy but not much at all). Now I've cut out red meat too... had no clue it was bad for endo!
I know it's hard, but if you are really looking for answers and a good outcome, I highly HIGHLY suggest getting on track with that above anything else. If your body is fighting off the inflammation it will be in fight/flight mode, and not sustain a pregnancy. I'm sure this feels like preaching, but it's something I've really had to come to terms with, and I'll be totally frank... took me a long time to adapt fully to... it's not easy, I KNOW!!! I just want to give this last IVF the absolute best chance possible as I'm forking over so much money, not to mention the emotional/physical toll each time I put myself through this. I don't want any could haves/would haves/should haves.. you know?
Some interesting reads at these links, but I highly recommend you do some research...
https://www.healthywomen.org/content/article/lifestyle-and-dietary-changes-endometriosis
https://www.drmcdougall.com/health/education/health-science/stars/stars-written/paula/
https://attainfertility.com/article/diet-exercise-endometriosis
Endo is super frustrating, and the infertility journey itself is so so painful at times. I wish you so much success, no matter which route you decide is best for you... as only you know what's best for you own circumstances. Again... best of luck to you. xx
Started TTC April 2011
Me: 32, DH: 32
Diagnosis: Endometriosis
- - -
I'm a YouTube vlogger who talks about Infertility, IVF and Endometriosis. Check it out here!
Follow along at http://liv4today.blog
Instagram @liv4todayvlog
I'm debating doing the cardboard diet for the few weeks I might have before the frozen transfer. It will help with the endo. Through I think the package are a lot of soy protein. So I'll have to think a little on it. I could easily eat healthier without being on the crazy diet, but any extra lbs I take off I know are doing nothing but good things in terms of getting preggo.
I think the intrallipid therapy is a better idea then clomid, it does exactly what I was thinking about. Doing a bit more research on all the suggestions and will bring them all to our Appt with the doctor next Tues
My mother talked about a Full Uterus scrape as well (versus just the scratching). Sounds horrible, but I'll try anything lol, so something I'll chat with the doctor as well.
So much reading today! I'll check out the links you have as well in a sec
Thank you, Thank you!
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Started TTC April 2011
Me: 32, DH: 32
Diagnosis: Endometriosis
- - -
I'm a YouTube vlogger who talks about Infertility, IVF and Endometriosis. Check it out here!
Follow along at http://liv4today.blog
Instagram @liv4todayvlog
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Background: after a year of trying unsuccessfully, DH and I went in for testing. That's when they discovered one of my tubes was blocked. The doc actually didn't think it was endo at the time because I don't have the traditional symptoms of pain and bad periods. I elected to do surgery to remove the blocked tube, and during surgery they confirmed it was endo, stage 3. We then did two rounds of IUI before moving to IVF. We did do PGS testing which I highly recommend. I'm now in the TWW.
To make things more complicated, I also have interstitial cystitis (chronic painful bladder condition). I'm on a low-to-no acid diet all the time for this reason.
To prep for our first ivf cycle I did acupuncture for the last few months. I can't say I did anything else special except the usual no alcohol, and I can't have caffeine anyway because of my IC condition. I'll let you know in two weeks if it paid off! Best of luck to you.
On our successful cycle, I also did acupuncture as it turns out chinese medicine could sort of explain the relationship between my liver issues and the endo...don't know how much/if that helped, but the acupuncturist was the first one to be able to tell I was pregnant.
A good friend of mine also has endo but no one was willing to perform the lap until recently when she came to see my RE. She has done an egg retrieval last year as she was diagnosed with premature ovarian failure, which we now know is likely a consequence of endo. Her RE always said even if it was endo, it didn't matter. My RE, on the other hand, said she needed to have the surgery in order to remove whatever was there and importantly, to remove inflammation. Turns out massive amounts of free blood were found in her abdomen, which my RE says would have impeded conception. Seems also that he was imolying that the egg quality of whatever was retrieved while she had massive amount of endo could be affected (she doesn't know yet as the egg retrieval was for fertility preservation, she was trying at the time, just looking for some pain relief and the ovarian failure was found through bloodwork). So anything you can do to reduce inflammation would likely help. Anything you can do to help with egg quality (although it already seems like you've done this with the CoQ10) would probably be good too. I hope it all works out for you!
@KidShrink - thanks for stopping by and joining us. Great info. I've heard mixed reviews about surgery, but now I'm thinking maybe if my upcoming cycle is unsuccessful I'll do that next. They just haven't found anything on any scans so were unsure where to look... I dunno... So many different directions to take it...
Started TTC April 2011
Me: 32, DH: 32
Diagnosis: Endometriosis
- - -
I'm a YouTube vlogger who talks about Infertility, IVF and Endometriosis. Check it out here!
Follow along at http://liv4today.blog
Instagram @liv4todayvlog
I forgot to add before - I asked my RE if endo can affect implantation, and he said yes but didn't specify how. From my own reading it looks like it can be from a toxic uterine environment created by the endo? As well as lesser egg quality. Is that what everyone else heard too?
Started TTC April 2011
Me: 32, DH: 32
Diagnosis: Endometriosis
- - -
I'm a YouTube vlogger who talks about Infertility, IVF and Endometriosis. Check it out here!
Follow along at http://liv4today.blog
Instagram @liv4todayvlog
What my RE did was a hysteroscopy, followed by a transvaginal endoscopy (essentially using the same type of procedure they use to do an egg retrieval but to observe the uterus from the outside and see if there was a need for a laparoscopy). That would have saved me from unnecessary incisions if there was no endo to remove. There are definitely a number of REs (including my friend's) who refuse to perform the laparoscopy arguing that it'll remove healthy ovarian tissue while removing any endo on it. My RE specializes in those types of surgeries, so he felt this is the way to go. If I hadn't had the surgery, there is no way I would have gotten pregnant without IVF as my left ovary is likely not producing great follies because of the endometrioma, and the right one was completely covered in endo. So even if I did ovulate on the right side, there was no way for the poor egg to make it in the fallopian tube, even if it wasn't blocked. There are definitely other ways to try to improve the environment and reduce inflammation, which are probably helpful to explore (my friend has been put on Lupron to calm everything down considering she went through more than 10 years of pain and inflammation until they decide to start trying again, but it does come with significant side effects).
Just sucks that a year later and I can tell things are getting worse and worse again. The pain is coming back. Even with about 6 months on a REALLY good diet to get down to a IVF weight.
I hadn't realized what the surgery could do to your ovaries when thinking about IVF. It wasn't until the third IVF doctor I saw (and the one I stuck with) that they recommend NOT doing surgeries for Endo removal until after IVF is successful in order to preserve as much of your egg reserve as possible, oops. lol. But I guess that would be in a doctors opinion as well.
Luckily our egg quality is really good. We just have low numbers every time. Tues I'll ask the doctor is there are things we can do about endo being in the uterus lining and maybe causing our implanting issues. I'll even go as far as a full uterus scrap if that helps lol.
Also intralipid therapy and Diet are big on my list right now. I'm reading up on it all now
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If that doesn't encourage you to try and remove wheat, dairy, eggs (and other inflammatory foods) I don't know what will
Also just a heads up. Not all REs believe in intralipids. It can be controversial. I picked my RE based on their belief in auto-immune factors affecting conception. Just a heads up that you may be hit with denial of its aid for pregnancy outcomes.
To answer an earlier question, they confirmed endo for me by uterine biospy. I was pretty loopy off drugs when they explained how they came to that knowledge, I believe it was presence of a protein or something. Not sure.
Started TTC April 2011
Me: 32, DH: 32
Diagnosis: Endometriosis
- - -
I'm a YouTube vlogger who talks about Infertility, IVF and Endometriosis. Check it out here!
Follow along at http://liv4today.blog
Instagram @liv4todayvlog
No ideas but a lot of hugs for you. I had stage 4 endo that was somewhat cleaned up in surgery, when they attempted to remove my damaged tube but it was so scarred they could not. We had a very successful IVF cycle and are having a healthy pregnancy so far! Endo isn't the end o' all hope for conceiving
I'm hoping my Doctor will be willing to try something, I don't really care if it is iffy. If it is not going to 'hurt' anything, then why not. I'm willing to put the money into it.
@khochanadelSo happy to hear about your success! I worry a bit the more I read about Endo people having a harder time then others with IVF working. It was something I had not read before. I always thought the issue of endo were out of the equation with IVF.
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@khochanadel - thanks for sharing. Love when someone gives us a little extra hope. Anything you did to help your odds (like acupuncture, exercise, whatever?)?
Started TTC April 2011
Me: 32, DH: 32
Diagnosis: Endometriosis
- - -
I'm a YouTube vlogger who talks about Infertility, IVF and Endometriosis. Check it out here!
Follow along at http://liv4today.blog
Instagram @liv4todayvlog
They've told me I'll need a complete hysterectomy when I'm done having kids too, because of the endo. Scary crap!
@khochanadel looking at acupuncture now, scares me! lol But you wouldn't think it would anymore after two round of stims for IVF
Doctor appt for me tomorrow, hoping she'll like something extra to do.
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Here I was hoping a Frozen transfer meant less shots and now I know there are 3 kinds we need this time around! lol
We talked about looking more at my uterus, doing a hysteroscopy where they can fix any issues they see on the fly or possibly a full uterus scrape. Sounds like neither would be covered under insurance, so I'd have to think about money on those. BUT if it gives us an extra % I'll do them
She wants to do those before the next fresh cycle though (not this frozen cycle), if we have to do one. It is our last fresh cycle on the program we are on, so she said we'll play all the cards we can find.
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I have endo, too. I was diagnosed at age 17, so I don't know the stage of endo I have. I have been on BCP since 17, to slow the progression of the disease. Even when I was on BCP, I had to be hospitalized a couple of times from menorrhagia with a follow-up D+C. One time, I was not given adequate treatment from a Catholic hospital who thought my condition was something else, and I developed a bad infection from waiting for treatment. I was in bed for a month after that D+C. This week, I go in for a hysterosalpinogram ( test to check if there is a fallopian tube blockage). I am thinking about acupuncture as well to destress my body from the toll TTC takes on me. Reading this thread has given me so much hope. Thank you.
This is still so hard to remember such things!.. Thanks to some lovely people on forums we found a good clinic in Ukraine - Biotexcom, where had the start and successful end of our journey (de ivf).. Sorry I didn't mean to hurt you somehow here, really. I just wanna say in such a situation we should keep going on whatever happens to us. I know this is very difficult for myself and dreadfully tough at moments.. Now I think we lost a lot of time struggling on our own, we should go to a fertility expert much earlier.. Did you think of changing the clinic and getting another view on your trouble??
Hugs, dear X Wish you all the best.
A) don't be scared of the needles. They are teeny tiny and you'll only feel them for a few seconds.
C) it is a lot like a massage without the touching. You get to just lie there and relax with some heat on you.
Give it the college try. Like my RE said - it can't hurt; it can only help.
Hoping to get started next week. I think we'll have our frozen transfer late April, but I have not heard from the Scheduler yet. But hopefylly it will be enough time for the acupuncture to do some good
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In July 2014 I had surgery to see just how bad my Endometriosis was. It was pretty bad. All over and large cysts on both ovaries. One tube was blocked. SO I decided to try a couple of things, diet change (granted I was already doing this for weight loss), Acupuncture 1-2 times a week, and change my beauty and household items to all natural.
I started this in Feb 2016
In June 2016 I had the same surgery and the differences were AMAZING! All my endo spot are about gone, just a few pin size spots now, instead of the big spots I had all over. The Cysts were literally dying where they sat. The doctor said they crumbled away as she tried to remove them. And both tubes were free flowing and usable!
I have no clue what did it, lol. But something did.
Now we have stims coming up next month. We'll see if there is an egg count change got better as well
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I just recently bought the book It Starts with the Egg since I know IVF is in my future. I haven't started reading it, am saving it for my hospital stay next week after endo surgery. But I know it talks about household items and diets, so your changes hopefully will increase your egg count and quality.
I have been a part of the June/July IVF board as well as the August/September IVF board. My husband and I have been trying for 3 years and fall in the unexplained infertility category. Prior to starting IVF and working with my previous RE, I mentioned endometriosis which he quickly dismissed. He said the only way to test was laparoscopically and why go there if it wasn't necessary. I've always had painful periods which have been getting progressively worse. Fast forward to my ET, my new RE found tissue with endometriosis on the needle used. My fresh cycle failed and my frozen cycle took only to result in an ectopic pregnancy discovered last Tuesday during my 7 week U/S. I was rushed to surgery as my hcg was very high and the baby was large for my tube. During the surgery they also removed my appendix due to a "growth". I just found out that the growth was endometriosis. For those of you that have/had endometriosis, did you have it removed prior to IVF? I am reading conflicting things and don't know how to proceed. I've read that endometriosis can lead to ectopic pregnancies as well as 3rd trimester miscarriages. I've also read that the chance of ectopic pregnancies increases from 1%-15% once you've had one. Some studies say that IVF is a way to bypass endometriosis; however, would I still be at risk for another ectopic or a late term pregnancy loss? I know I need to sit down with all my doctors and discuss this, but was wondering if anyone has been through anything similar and how they proceeded. Thank you!
Unexplained/ Endo
Medicated IUIs # 1-3 BFN
IVF #1- BFN
FET #1- BFP; Ectopic pregnancy found at 7wks
FET #2- February 2017 BFP Beta #1- 119 (8dp5dt) Beta #2- 475 (12dp5dt)
Unexplained/ Endo
Medicated IUIs # 1-3 BFN
IVF #1- BFN
FET #1- BFP; Ectopic pregnancy found at 7wks
FET #2- February 2017 BFP Beta #1- 119 (8dp5dt) Beta #2- 475 (12dp5dt)
I have also heard mixed things. Here is some I know or have heard
They do say Endometriosis can only be diagnosis via surgery. Mainly because it is the 'development of uterus material OUTSIDE the uterus". But I think there are some big hints. Chocolate cysts. They don't go away and normal ovary cysts might during your cycle. They have material in them that has them look different on an US. I had a Urgency room doctor and my OBGYN see these cysts and suspect I had Endo.
I believe they can test for Killer T cells. (silly name I know) But these are a result of Endo and basically make your uterus a bad environment for sperm. Which is why IVF can bypass it. I haven't had this test done or suggested however.
Of course painful periods. But I think other reasons can cause this. I'd be in tears, unable to move for hours due to the pain every month.
Some IVF doctors don't want you to do these surgeries when they involve the ovaries, since removing a cysts means removing ovary tissues and that outside ovary piece is where your egg reserve lives. We don't grow back lost eggs ;(
Of course those cysts on your ovary ALSO cause issues with IVF. They take up space on your ovaries where follicles would normally grow. And when going to retrieval the doctor might have to go through a cyst in order to get to the follicle. Putting all the Endo gunk in the syringe with your eggs.
One reason to have a surgery is to test for blocked tubes. Endo likes to do this. And if a tube is blocked it can cause a strange 'flow' in your uterus. Both a backup and living ground for this 'hostile environment' up in your tube hat is blocked, but also they have noticed that more ectopic are caused by this blockage. because it can suck the egg up there.
I have never heard of late pregnancy miscarriages with Endometriosis. Basically I have heard it causes issues with you getting pregnant, but once you are, it is a normal pregnancy.
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I had extreme Enodmetriosis when they did my surgery back in 2014. It was everywhere in my gut. I also had 2 large cysts. I did have them remove the cysts (I wasn't as educated then) and as much Endo as they could during this surgery. One of my tubes was blocked. BUT remember Endo it all comes back given time.
My IVF doctor decided she wanted to go in an look at it all as well (after 2 failed transfers), that was June 2016. She wanted to remove an endo she could, remove the cysts because they were just taking up too much room (I have a 2in cysts and a 1in cyst) and I was barely making any eggs s I needed all the room I could get. She tested my tubes (and remove them if blocked) and put a camera in to look at my uterus.
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Some useful things I have done to try and help my IVF experience in terms of Endometriosis are diet, acupuncture, all natural products at home.
Of these three things something affects my Endo and my 2016 surgery showed it about gone, cysts were dying off and my tube was unblocked. Win in my book! Though I don't know exactly what did it.
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I couple random things (as if this post isn't long enough already). Just things I have read and keep in mind
Endometriosis can cause issues with implantation - For this, we are doing lovenox shots after transfer. My doctor said it may not help, but it can not hurt so why not.
Endo lowers the temps of your uterus - Just something I read, so after the transfer I planned to always have a blanket on my stomach just for a little extra warmth. You do want a warm environment for your little embryo
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@ derrian You weren’t kidding…that was a long post! I truly appreciate the time and information you put into your response. Yes, I’ve had endo show up during two different procedures now. So I know I have it, I just don’t know to what extent. I’m guessing its not very good if it was on my appendix (very rare occurrence of 2-3%).
I haven’t heard of killer T cells but will certainly look into that. If it creates a bad environment for sperm, I wonder if it also creates a bad environment for an embryo?
Yes, I’ve always had very painful periods and they have been getting worse and worse as I get older. I thought I was going to have to go to the ER during a recent period as the pain was so bad. Doctors are very quick to dismiss this as many woman have painful periods L During the ET was actually the first time that endo had been found.
I have had a HSG X-ray a while black which showed that my tubes were clear. Do you think I should have this repeated? Would endo shop up then?
Here is the info I keep reading: “ women with endometriosis are more likely to experience complications during and after pregnancy, including an increased risk of miscarriage, and ectopic pregnancy. Women with endometriosis who pass the 24-week mark of pregnancy are also at a higher risk for hemorrhaging ante- and postpartum, as well as preterm birth” and “Women with endometriosis are more likely to lose the baby and need extra care, say fertility doctors. It is caused by the lining of the uterus being found elsewhere in the body including the ovaries or vagina.A study, on nearly 15,000 people in Scotland, found the condition increased the risk of miscarriage by 76%.”
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Sounds like you had horrible endometriosis! Yes, I hate that it comes back!! I’m sorry to hear about your failed transfers.
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That is amazing. I have been reading a lot about diet for endometriosis. I eat fairly healthy now but have read that a vegan diet is best…that would be a big change! I’m going to at least try to walk more. I can’t believe yours was gone…that is incredible! What kind of diet are you doing? I’ve done acupuncture in the past and it seemed adding one more thing in actually stressed me out more and I didn’t enjoy it.
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I will ask my RE about lovenox shots as well. I’m willing to do anything. I had not read that endo lowered the temperature of the uterus. I knew it was important to keep warm after the transfer anyway but now I guess it’s event more important. Thank you so much for all your wonderful information. Have you had any successful transfers?
Unexplained/ Endo
Medicated IUIs # 1-3 BFN
IVF #1- BFN
FET #1- BFP; Ectopic pregnancy found at 7wks
FET #2- February 2017 BFP Beta #1- 119 (8dp5dt) Beta #2- 475 (12dp5dt)
Surgery definiely helped my periods be less painful. But it was about a year after that I noticed them getting worse again. So 2015.
2016 is when I did a ton of stuff to help with IVF and now the Endo is abut gone
I was told to do a notified Diabetics diet to help with Endo. You want stick to organic meats if possible, low/no carbs, and eat lots of foods with antioxidiants
There are lots of articles out there about what 'not' to eat because it can help the Endometriosis grow. Anything high in estrogen, for example (Which is why you want organic meats)
I actually am doing a diet called "Ideal Protein" granted I changed it up a bit so I don't have to buy the super expensive packets. I did this really for weight loss, I needed to go from 208 to 186 in order to get into the IVF program. 2 months on that diet and I reached my goal weight
Now I just keep on doing it whenever I can, the lower weight you are, the better your chances with IVF
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My doctor talked about the endo gunk not being good for the egg. But never for the embryo. Once it implants, she said all was fine. Not entirely sure why, but I have read that as well.
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I also do not like Acupuncture lol, BUT it is highly seen as a good thing for IVF and something helped my Endo. So I'll keep going lol
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I have not had any successful transfers. Of course we have only gotten 2 tries so far since we aren't making a lot of eggs to get chances at Frozen transfers. I'm hoping, if there is an implantation issue, the lovenox will help that.
Granted you have to be careful since lovenox prohibits your blood from clotting. My doctor said if we have get pregnant this time around she'll keep us on lovenox for awhile
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Started TTC April 2011
Me: 32, DH: 32
Diagnosis: Endometriosis
- - -
I'm a YouTube vlogger who talks about Infertility, IVF and Endometriosis. Check it out here!
Follow along at http://liv4today.blog
Instagram @liv4todayvlog