I’m in such a weird space right now…not doing anything.

This is the first time in 3 years I haven’t been trying to have a baby. I haven’t had appointments. I haven’t gotten my blood drawn.I haven’t had my lining measured. I haven’t had a shot. O.k….I’ve had a shot of vodka or two…but you know what I mean. I could go on and on. But I am just here…living and not trying.

It’s really odd because I still haven’t achieved my dream…to have my baby. I haven’t given up on my dream but I feel like I am just at a crossroads with it all.

After IVF #3 totally failed—I’m exhausted.

If you’ve been following me these past couple of years…I’ve been through a good amount of crap(see timeline here). I know others have been through more..but holy moly….there’s only so much disappointment a girl can handle month after month, year after year…and I’m pretty much there.

I really want some good news for once.

I continue to research my specific problem…chronically thin endometrial lining. I’m less than <.8%. Seems unreal right? To be part of not even 1%? Yeah…and what’s even worse is that there might be procedures out there for women like me….but because we are less than <1%, there are not enough women to have clinical trials with and in turn not enough interest and money in government trials….cue my FRUSTRATION šŸ™

I wrote about some experimental stem cell treatments in a past post. They are doing this in Spain, China and Greece. So, I’ve been trying to find a way to make it happen here in the good old US of A. Women with Asherman’s Syndrome and other uterine lining issues have had their own stem cells(NOT embryonic stem cells…BIG difference) washed in their uterus and lining has grown and they’ve been able to get pregnant, stay pregnant and deliver healthy babies. Basically, when you have Asherman’s Syndrome(damaged thin endometrium), it is extremely hard for you to carry a child full term. The lining is damaged(in my case due to my appendix rupturing when I was a child) and it just won’t grow. No amount of estrogen will help. No pineapple core, pomegranate juice, brazil nuts, etc, etc..will help. Most women don’t even have to worry about this problem. So I am part of a small group of women….lucky freekin’ me.

But I found someone that was willing to help.

He is the CEO of a plasma/stem cell company. I wrote to him about my story. At first, he said he couldn’t help but I pressed on..I tugged on his heart strings, he researched on his own and he spoke with his partners and he was finally willing.

Wow, finally someone was willing to help. But there was a catch, he said that my RE had to perform the transfer of the stem cells because he didn’t know any Dr. that’s ever used these cells for GYN procedure, it is basically like a simple IUI but with my own stem cells instead of sperm. This, in turn, would regrow my endometrium that was damaged. I read a couple studies where it had worked in China, Spain and Greece…and the women had even worse cases than me. I truly believe that this could help me. That I could pave a way for women in the U.S. for a treatment so that they wouldn’t have to look into gestational carrier, something that most of us cannot afford or travel to another country for a chance.

So I went to my RE. To go over our failed cycle and bring this up to him. I needed to bring all of my research(like I did with the G-CSF) and talk him into this. I felt like I could do this. The CEO of the company did his research with his partners and they agreed that it could help me. They even offered their services free of charge(so kind). So I just needed one more person on board. I pled my case and before I could even show him the paperwork he said, “No, I can’t go against my morals and standards of practice for my field of medicine. I just don’t feel comfortable with the small amount of studies that have been done and it’s not proven to help.”

And that was that.

Because there is not enough research, because there are not enough patients, because there is not enough funding…because I am a part of the <.8%…No one really cares enough to help. They say, “Use a gestational carrier and have your baby that way.”

Like it’s that easy to find someone to carry your child. Wow.

So I don’t know what we will do now. I feel so beat down and defeated. I feel like I have exhausted every procedure available to me to grow this lining. I have tried to find a way.

But ultimately….I just want my child…my children.

I want them to be healthy. I don’t want complications. I just want them here with me. In my arms. Safe.

I guess if I have to choose….I would rather have my children for the next 60 years than carry them for 9 months. That’s the way I must look at it to accept it.

So that’s where I’m at. Still lost but trying to wrap my head around the idea of someone else carrying my child and how that is even going to be possible. We can’t afford an agency. We have too much debt from all of these cycles and procedures for the past 3 years.

But I truly believe, some how, some way this will happen…

Well…..I know it will happen because I will not stop until it does.

It’s the air I breathe. It’s the reason why I get up every morning. For those babies. My babies.

“I will keep holding on…until I’m holding you in my arms” Love, Mom

27 Comments on Frustration, Fear & the Future

  1. You can do this. You already did it once- you got someone you didn’t know, who had the capacity to help to agree to it in the form of that CEO… don’t give up! RE’s are a dime a dozen, there has to be one out there who would be willing to do this. Who wants to also help that .08%!! You are resourceful, and a fighter, and I just know in my heart of hearts that you will get this done- and you will make a DIFFERENCE for that .08% at the same time!

    Sending you lots of love, and strength!

    • Thanks so much vtr87…I’m trying to figure it all out…so hard when others are unwilling. I am a fighter and I will keep going until I have my babies…thanks for the support…appreciate it a lot! xoxo

  2. I’m so sorry your RE isn’t on board. The stem cell transfer seems fascinating and groundbreaking! Why wouldn’t he want to be part of that?! I don’t know why… but deep down in my gut, I think that just might work for you!

    I know you’ll still have your babies. Some way, somehow. It WILL come to be.

    • Thanks girlsetsfire…the stem cells are ground breaking…it’s actually working in other countries and I just want the US to get on board. I tried to convince my husband to let me go to Greece(because they are doing the procedure there) but the costs and uncertainty worry him. I’ll figure something out but again I just want my babies…healthy and safe…thanks for tour support…xoxo

    • Thanks Caroline…I know. It is a shame since it has worked in other countries and simply due to the small patient population in the US, it probably won’t be able to get approved by the FDA because not many women need help with it…so frustrating but you are right…doors close and we don’t understand why but there is a reason and I’m determined to find it and bring my babies home..xoxo

  3. Oh vey! Any chance there’s a different RE in your area that might agree to help? I’m sure you’ve probably already thought of that. I’m sorry Hon, that is a very rough hand that you have been dealt. Praying you find some answers and some peace!

    • Thanks Dawn…I’ve tried to ask other RE’s but they don’t want to touch me with all of my problems and they are worried about law suits and such since it’s not FDA approved. Thank you for your prayers…something has to bring my babies home to me and I’m determined to figure it out…xoxo

  4. Have you thought about trying to find a research hospital that has a doctor willing to do it? Like another comment suggested, it is groundbreaking… someone in the US has to want that! I am very sorry for your situation, and my heart breaks for you. If I wasn’t infertile myself, and trying, going on my 9th year to have a baby, I would be your surrogate in a second. That is a gift I have always wanted to give, it was only deepened when we found ourselves facing infertilities ugly head! I really hope something great comes your way, giving you the babies you dream of!

    • Thanks a bunch Jenna…yes, my RE actually said if I could get a research hospital on board and it became a trial then he would be willing. I’ve contacted a couple of universities but they haven’t gotten back to me. See, the main problem is that it is such a small amount of women with this problem that there is not enough interest in solving it. Thank you for your sweet words of wanting to help someone carry a child…and I am sorry for the 9 years you have been going through…wow. I really hope something wonderful comes your way too…no one should have to go through what we have gone through…my heart breaks for you too but somehow we will get through this…please keep me updated on your journey…blessings to you! xoxo

  5. What about trying an RE that is more cutting edge like Dr. Braverman? I know this a isn’t his area, but he works at the cutting edge of the medical field and may know someone who would do the procedure.
    Also, living in the space you a re in right now is weird. I think that’s maybe part of why we jumped into adoption so quickly, we knew we were going to ha e a family, we just needed to find our way. Now, please understand I’m not suggesting you jump into adoption, more just sharing how we pretty quickly moved out of the space you are in because it’s such a hard place to be. Sending you love my friend.

    • Thanks MPB…I’ve actually contacted numerous RE’s that are specifically trying to help women with thin linings but it is all so relatively new that they have tried to get funding to do the trials and can’t. There is an RE, Dr. Casper, in Canada that I’ve spoken with and he is trying to help but again…small patient population and no funding for the trials makes it extremely hard. And I am thankful for your support and understanding. It is a weird space right? I’m ok with it for now but I do feel like we will need to move forward with something soon…of course, I will keep you updated if/when we decide what is next but I am soooo happy that adoption is going well for you all. I know there have been some struggles but isn’t there with everything associated with infertility? It’s like never ending but you are right you are going to have your baby soon…I want my baby soon and I hope I can find that way soon…thanks for all of the support friend…lots of love back at you…xoxo

    • Thanks alicia3234…yep…3 years non-stop is exhausting…I’ll take a break, drink some wine and re-group..and I will have my babies when they are supposed to get here..thanks for your support..xoxo

  6. There’s got to be an RE somewhere that will listen. There has got to be, right?! You’re persistent. You’re a fighter. Start emailing all of them in your area and get that fight back. You’ve been through hell, I know that well because I’ve read just about every one of your posts. I’ve cried when you’ve cried, I’ve hoped when you’ve hoped, and I believe when you believe. And do you know what, if you’re not ready to move on, don’t. However, know that whenever you are ready to take a different path, it’s okay and I’ll support you there too. But the fact that your RE didn’t even listen?? Find someone who will. It sucks being on the short end of the percentage and I’m sorry no one seems to care. You deserve so much more than this defeat & heartbreak. šŸ’œ

    • Thanks so much…I know right?! You would think someone would be willing to help but unfortunately, due to possibly getting sued, most Dr.’s won’t try anything that is not FDA approved and this procedure is far from that…they are doing this in Greece but the hubby is pretty against me going and the fact that I don’t know if we’d be able to afford it anyways…so frustrating. But I’ll figure something out…you are right…some way I’ll bring these babies home…I just have to…thank you for always supporting me…one day we will look back and be like….”Wow…I can’t believe we went through all of this but it sure was worth it” I must think that way to be able to get through all of this heartache…we both deserve a break…thanks for all of the love and support always…xoxo

      • I didn’t even think of that. Bummer.. Where is the shady, unethical RE when you need one?? šŸ™‚ We wouldn’t be able to afford Greece either. but if you’d need a buddy for Greece I’d totally make it work, stop and pick me up on the way. šŸ™‚ We WILL get through this. WE WILL.

  7. Sweetheart, drop that doctor like a bad habit. I also have a question. I don’t know the specifics of your medical conditions but had your doctor suggested and endometrial biopsy/scratch? It helps with implantation and increases blood flow to the uterus which could help make your lining a little thicker? Hurts like a son of a gun but it helped our lining be at least 2mm thicker. I apologize if you have already tried it. I looked through your timeline and didn’t see it mentioned. get a new doctor and do that trial!

    • Thanks so much ivoryangel143…I actually haven’t had a biopsy/scratch because I have had adhesions in the past and they worry that they will grow back and also, I have some “bald spots” within my endometrium that no lining grows…but I agree with you…I think I should just try it because..why not? I mean if they are telling me to use a gestational carrier then why not try this? If it ruins my lining more, well, it’s already ruined so whatever…I might just have to ask for this next month for the heck of it…thank you for your suggestions and support…xoxo

  8. Hi dreaming, I second the previous posters- you’ve done the hard yards with finding the stem cell company, and now you just need an RE wanting to do a test case. Someone with a bit of get up and go and wanting to get their name into a journal or conference (sad, but there needs to be something in it for them).
    My naturopath uses high dose fish oil to improve lining (its probably just a crock, but I suspect it causes me to have mid-cycle bleeds, so it does do *something*). Not sure if you’ve tried it but thought might be worth mentioning.
    Wishing you luck

    • Thanks a bunch RC…I know, you would think someone would want to help but unless it’s approved by the government trials, most won’t do it on their own in fear of being sued. Sad but true. I even wrote up something stating that I wouldn’t sue but they still don’t want to do it. I’ll have to look into the fish oil…I take some but not a lot…thank you for the luck and support…xoxo

    • Thank you unwickedstepmother…I am gonna take a little break…it’s exhausting..I wish taking a break would lead me to my miracle but unfortunately, when you don’t have tubes, you have no chance naturally…oh, how I wish I had tubes šŸ™ Oh well, some way I will get to my babies…just gotta keep the faith..thank you for your support…xoxo

  9. I’m so sorry. You did all that work researching and it sounded so promising… Wherever the next leg of your journey, I wish you nothing but the best. You are strong and determined – I can’t help but believe you will have your take home baby one day.

  10. That is tough, so sorry you’re dealing with that. I really hope that your dream does come true. I know the journey there can be really frustrating so don’t give up!

  11. I just wanted to say I completely relate to your statement/belief that you WILL have your babies one way or another. I felt the same way and recently gave birth to my IVF miracle in March. Took us 8 years!! The moment I saw her I knew it was all meant to be and that I was suddenly grateful for all of the pain and heartache–the journey is what brought this perfect child to me. Your journey will end the same way, unfortunately we just can’t choose how or when. Hugs to you fellow

  12. Hello, I am don’t know where I stand statistically but my uterus is hosed too. 3.8 is the maximum thickness. My life in a nutshell- I have never missed a period since I started menstruating, each time for a full five days. I ovulate like clockwork very cycle. Never taken contraceptives, no STDs, only one sexual partner ever. As clean as it gets in terms of Gynaecological health. In 2015, I got pregnant in the third month of trying. I was so happy, but two weeks later I was in ER battling death. It was a ruptured cornual ectopic pregnancy. I lost one tube. I picked up every piece of faith and courage in me, to fight and move forward. But I never had a normal period after that. Initially doctors thought I was another psychotic woman desperate to get pregnant. Relax and you’all be fine, I was told. Months later I found a doctor who cared. My lining was very thin. What an HSG revealed, was confirmed by a hysteroscopy. I had intra-uterine scarring. I had a balloon in for 10 days, have done two cycles of estrogen but with no improvement in lining. Since the past 1-2 months, I am also on vitamin E and Trental, do accupuncture in addition to eating healthy and exercise. It’s been a year since the ectopic and 5 months since my first Hysteroscopy. I still ovulate regularly. I just had a second hysteroscopy and the news is bad. The scarring is worse than before and I have Ashermans. I have been asked to consider surrogacy.
    I am looking at the stem cell work, and that’s how I landed here. I feel better knowing I am not in this alone. Hope you find comfort in knowing someone else in the < 1% as well. I am curious where your journey led you since this blog. Sending hugs, love and hope your way!

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