Anti-paternal antigen-enough’s enough

“This is the hardest story that I’ve ever told, No hope, or love, or glory
Happy endings gone forever more” – Mika, Happy Ending

This is the song verse playing in my head. Because it is the hardest story I have ever told. Putting it all out there. It’s not the happy ending we wanted.

We, hubby and myself, seem to have lost “us” during the last three years. We have had nothing but stress and heartache over trying to conceive. I have been depressed since starting the birth control pills. It’s slowly getting worse. I go through my day fighting the anxiety and tears. Mood swings? The understatement of the century. On Monday, I have an appointment to check that my ovaries have cooperated. Then I’d be given Lupron for three days. I thought that was causing my anxiety, but it turns out, these a bigger cause. Neupogen. Read the side effects. How many more drugs can I add without risk and consequence? What happens to the miracle child after all of this?

My immune panel came back. There’s an HLA gene combo I have called anti-parental antigen. Basically, my fabulous immune system is not tolerable towards the part of the embryo that is my husband. This causes the lack of implantation. We kind of knew that already and addressed it with the arsenal of shots and pills from last cycle. Now, he wants to add Neupogen, which may or may not be covered under insurance. Plus this HLA gene also has been linked to premature birth and still births, and autism. Anti-paternal antigen.

I am currently on cd14, 10 days of bcp’s behind me and I want to stop them. I’m also still taking the baby aspirin and prednisone, my generic synthroid and prenatal and vitamin D. I feel lousy. I’m in tears at work. It shouldn’t feel this way.

I was gloomy again last night. Hubby and I had a nice dinner out and gelato (which I knew I shouldn’t eat due to my milk allergy, but I had to have it and suffered greatly) and a nice short walk. When we got home I was in tears and asking what he thought of the Neupogen and everything else. It took a little while, then he said it. “I don’t think we should do this anymore.” I cried some more and then a little more when I realized it was a relief to hear it.

Then I cried more because I am not sure if we should give up. This would be the end of biological parenthood.

I always thought that a surrogate would be the answer to my evil uterus. Then my husband explained his point of view, which I never looked at. It’s another person that would be in our lives and marriage. At this point we need to be in a marriage, not just going through the motions. We love each other, we make love, we laugh sometimes, watch tv together, but we don’t really have fun anymore. It’s been one thing after another since before we for married, since we decided to start trying for a baby, it’s been an uphill battle with no end. The first year was amazing. The second year, cervical dysplasia and endometriosis. 6 surgeries, two failed IVF cycles and a failed FET cycle, followed since 2010. We’ve only been married for two years, but it feels like a lifetime. That’s not always a good thing.

I have endometriosis. There is no cure. It came into our lives the same month as our decision to start a family did. December 2009. I also have no tubes and adenomyosis now, along with Hashimoto’s and food allergies. It’s like a cruel curse. It’s been a vicious cycle. I want out of it!

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About our last embryo

I have Endometriosis, Adenomyosis and Hashimoto's Thyroiditis. I've had Lyme, Bell's Palsy and the Shingles before I was 25. I've done IVF twice, with and without immunosuppression and FET. I am married to my best friend and I am Infertile.
This entry was posted in adenomyosis, anxiety, devastated, embryos, Endometriosis, endometriosis awareness, excision surgery for endometriosis, food allergy, hope and love, hydrosalpinx, infertility, infertility in the workplace, invisible illness, IVF In Vitro Fertilization, laparoscopy, laparotomy/c-section scar, reproductive immunology and tagged , , , , , , , , , , , . Bookmark the permalink.

20 Responses to Anti-paternal antigen-enough’s enough

  1. megz says:

    xxxx’s we have a similar issue with the HLA anitbodies etc- It really is a hard pill to swallow, because it presents so many issues…=(
    I will be praying for you guys, in whatever you may decide.

    • You’re lucky you have kids tho.

      • megz says:

        Absolutely. I do not disagree there…I thank my lucky stars for them every day. I cannot begin to put myself in your specific shoes, and know what you are going through…I wont even try……even if I had NO kids, I still would not know what it is like to FEEL exactly like you do…we all cope VERY differently….What effects one person, may not effect another the same…We are all entitled to grieve the loss of the ability to have a child, be it the first or 5th….I don’t think it is fair to play pain olympics and “who has it worse” or to negate the difficulties someone has faces because they already have a child- you never know what that person is experiencing in their own situation.And, There is alwayyyysss someone out there that has it worse off than you…At least I try to remind myself of that…..However, I do know what it is like to feel betrayed by your body…To feel like you are falling apart and have NO control over anything…It is a hard place to be …This kind of issue is not very common, and is hard to treat and very expensive, some might even say out of reach for most…It is not understood by most specialists, and is just plain sucky… to know your body basically kills any baby or chance of a baby you have because your body doesn’t like the genes in your husband and there is nothing you can do to change it, except take risky meds…Thats not a thing anyone should be faced with…it just plain sucks….I am so sorry for all you have endured, and I wish there was something anyone could say or do to make this any easier.. I hope you find peace, in the midst of this time, and many blessings follow you, whichever way your journey goes…<3

      • Exactly right. Thank you.

  2. newtoivf says:

    thinking of you. such a hard decision…wish I had something to say that would help in anyway xxx

  3. Steph Mignon says:

    You and your hubby have been trying for about the same time as me and mine, so I can definitely relate to how you feel. I too have food allergies and endo, though they’ve both gotten more manageable with Chinese Medicine and herbs. Key word though, is “manageable.” Like you said, there’s no cure and it sucks. I can also to relate to how you feel on the pill, it turns me into a depressed and emotional mess! I can only imagine being on all those other drugs. And who knows, I might need them! That’s one thing that gets me… I’ll have to have more miscarriages before they test me for clotting disorders and that anti-paternal gene. Argh. The whole thing is just depressing, exhausting, and ANNOYING. Regardless, my thoughts are with you as you navigate toward your next course of action or in-action.

    • Thank you. I wish you all the best.
      Maybe you should seek out a reproductive immunologist for extra help and to avoid any more devastating miscarriages.

      • Steph Mignon says:

        That’s probably a good idea. If only money grew on trees!

      • True. I am lucky my insurance covers 60% out of network doctors, which we know all specialists are.

      • Steph Mignon says:

        I get only 10k toward fertility coverage, which is pretty awesome since some have none, but is quickly dwindling unfortunately. Tests and ultrasounds alone have almost used up our insurance budget. I can’t imagine how much IVF will actually end up costing if and when we do it, let alone a trip to the immunologist. Sigh.

  4. Wannabemom says:

    It’s okay to want off the crazy train and take your life back. That’s about the only good thing about IF. It’s a disease where you can say “enough” and walk away from the battle.

  5. amykristin75 says:

    So sorry you are going through all of this. I was diagnosed last month with NK cells, which sounds similar to HLA. My body will basically reject any embryo that tries to implant. The horrible realization that came along with the diagnosis is that everything we had done so far (IVF, IUIs, pills, shots, etc) were all for nothing…they never had any chance of working.

    • I know, if only everyone checked our immune systems first. Some RE’s wont do anything with the info anyway, like the ones I went to that were covered by insurance. Now its too late for me. Will you do ivig?

  6. katherinea12 says:

    Many thoughts and prayers as you continue to make these very difficult decisions.

  7. dogsarentkids says:

    I wish I had something poignant or witty to offer you, but I have none. I remember what it was like at 2 years. Honestly, I think years 2-5 were the WORST. After that, it’s not like you “accept” the situation, but you eventually to learn to live with it. I’m still struggling every day, but the way you deal with it does shift at some point.

  8. Stina says:

    Ugh! I know there is nothing I can say to help really, just know that I’m thinking of you. In a way I feel very lucky to have avoided the infertility roller coaster as my endometriosis forced me into a hysterectomy very early on so I always knew that adoption was my only course. I do know what it feels like to be betrayed by my body though, sometimes it just feels like one thing after another and it can be so hard to accept. I can only send you positive thoughts and prayers and know that you are not alone in your suffering. Each of us may have different issues or varying illnesses that we battle but our pain unites us universally. As an endosister I stand behind you and offer my support however feeble that attempt may be.

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