Doubts and choices

Monday evening, as I left the RPL clinic’s information meeting, my overall feeling was disappointment.

It started out nicely. The room was filled with over 30 other couples. The doctor presented himself and pointed out the fact he’s been treating patients suffering from recurrent miscarriage for the past 30 years.

He started by showing some common ‘myths’ we hear all the time. The first one, ‘If you just try again, next time it should be fine’, he replied to with some statistics. He said after 3 miscarriages there’s over 60% chance of another miscarriage in any subsequent pregnancy without proper treatment, while after 5 miscarriages there’s almost 80% chance. The second myth, ‘It was probably some chromosomal error with the baby’, he commented by saying his research has shown that it’s not the case with patients dealing with recurrent miscarriage. In such cases, about 90% of the babies are chromosomally normal (of course it varies with the age of the mother and other factors; this number was for young, otherwise healthy women).

At this point I was feeling quite excited and hopeful. I thought, finally a doctor who’s willing to investigate and treat me.

During the rest of his presentation, the doctor explained some of the main causes of recurrent miscarriages and the treatments they offer. He also showed a graph outlining the success rate of his treatments, which seemed to vary significantly with the number of miscarriages the woman had prior to starting treatment. Women with 3 previous losses had up to 75% success in 5 years’ time, while women with 6 had about 60% (bear in mind that I’m writing these numbers from memory, so they might not be exact).

Throughout his presentation there were a few things that bothered me. When talking about immunological causes to miscarriages, he mentioned natural killer (NK) cells and their impact in the developing embryo, however said it wasn’t possible to actually measure these cells and instead, they look for other indications. If such ‘indications’ are present, he can offer treatment. Many other doctors offer a NK assay, so I don’t understand why he’d say it can’t be measured (I guess he doesn’t believe in the current methods).

Another thing was, he never mentioned alloimmunity as possible cause, nor did he mention lymphocyte immunization therapy (LIT) as possible treatment. He also only touched upon testing for lupus anticoagulant antibodies (which I have already been tested for, several times), as opposed to the complete assay of antiphospholipid antibodies I was hoping for.

These observations, among other smaller ones, were a bit discouraging, but at this point I was still feeling quite hopeful. Until, after listing the different treatment options (including IVIg, Hydroxychloroquine, prednisone, heparin) and explaining that each treatment protocol is personal, based on the patient’s test results and history, he presented a few protocol guidelines.

The first one was: history of 3 miscarriages, all blood tests normal. Treatment offered in this case is tender loving care. In other words, nothing. That pushed me over the edge. Four miscarriages entitles one to Hydroxychloroquine and five, to IVIg; but three is just try again.

How could he say that after opening up with the myth ‘If you just try again, next time it should (NOT) be fine’? I don’t get it. Not to mention that tender loving care should be offered to everyone, despite previous losses or not. And when I hear doctors suggest tender loving care as treatment for recurrent miscarriage it makes me think they believe my stress and anxiety caused my miscarriages (instead of the other way around, the losses causing me stress). And I really don’t need the extra guilt that comes from such thoughts.

After the doctor’s presentation, a nurse explained the practical details and showed us how to fill in all the forms. She also emphasized the importance of emotional support, stating that over 60% of all RPL patients are highly stressed and up to 9% are moderately or severally depressed. Included in the forms we need to send back to them are assessments of our stress and depression levels, for both partners. This thoughtfulness was refreshing, as I often felt the psychological impact of our losses and infertility was neglected by the medical staff. How they intend on dealing with the stress affected patients, however, remains to be seen.

The nurse explained the expected timeline as well. The initial consultation will happen in the next 2 months, when the patient’s history is discussed and blood is drawn for testing. About 6 weeks later patients are called back in to go through the results and chosen treatment protocol. Only after that we’re cleared to try again (she emphasized several times that we should avoid pregnancy until then).

The meeting ended with a very emotional account from a previous patient of her experience. She went through 7 losses before giving birth to her daughter. Her story was so touching, it left most of the women present in tears.

When the meeting was over, I had some practical questions to the nurse and during our short conversation she confirmed that I’ll probably only get the initial appointment in the beginning of March, so our FET isn’t likely to happen before May.

Overall it was a very good meeting. All the staff seemed very caring and there are many options of treatments and testing. Why I left with such overwhelming disappointment feeling, I can’t explain. I don’t understand it myself. But the truth is ever since that meeting I’ve been into a horrible funk.

Up until Monday I’ve been feeling a lot more like my old self, thinking optimistically, acting more socially and so on. I thought I was finally learning how to cope with all this.

Since the meeting I’ve gone back into misery mode: crying everyday (several times a day, including at work, hiding in the bathroom), wanting to hide from everyone, not able to concentrate on my job, needing over an hour of self convincing every morning just to get out of bed and face the world, etc. And I don’t really know how or why I got here.

My only guess is fear. Fear that after all the tests and all the waiting I’ll be told to try again without any treatment. And I’m very familiar with the result of just trying again.

I think I might be overwhelmed with doubts: whether I should trust this doctor, whether I’m wasting time (if I’m supposed to just try again then I might as well do it next month), whether I should look for a more ‘aggressive’ RI (like Braverman), whether I should make more lifestyle changes (such as going gluten-free)… The list goes on and on.

The positive from this is: I have choices. There are many options I can pursue if it doesn’t go well with this specialist. I just need to stay strong until then and keep going. Which is easier said than done, right now…

 

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28 thoughts on “Doubts and choices

  1. Oh wow.. “The first one was: history of 3 miscarriages, all blood tests normal. Treatment offered in this case is tender loving care. In other words, nothing. That pushed me over the edge. Four miscarriages entitles one to Hydroxychloroquine and five, to IVIg; but three is just try again.” That paragraph really struck me.. I can see why you were a bit disappointed. That’s the thing about RPL.. you analyze EVERYTHING and doesn’t it just seem like a guessing game? It’s so frustrating and I’m so sorry your in a funk again. Feel what you need to feel and try not to beat yourself up. RPL does have such impacts on the emotional state and I am glad they recognized that. Big hugs.

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  2. I had my third and fourth miscarriage while under the care of a doctor who thought I should “just keep trying and eventually one will stick.” F*** that. Switching doctors and investigating things I could do on my own to improve my chances gave me a feeling of action that kept me from losing my mind. I hope when you actually meet with this doctor he doesn’t recommend TLC.

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  3. I can only say as a veteran of 7 pregnancy losses of a wide variety ranging from biochemical pregnancies to a ruptured ectopic to a 2nd tri fetal demise that you have to find the reason, and they are varied. I’m a big believer in ruling out variables. I think PGS is worthwhile since half of all losses are genetic. I think it’s important to be scoped for anatomical anomalies with a biopsy for endometritis and receptivity (found out after many years of agony that my receptivity is delayed via the ERA test, and poor synchrony can cause faulty implantation that results in loss or allow implantation of genetically bad embryos growing behind schedule). After that, some empirical use of steroids, antibiotics, and blood thinners are usually harmless and cheap. Make sure you’re with a doctor who doesn’t dismiss these concerns. You should have to endure MORE suffering to warrant proper care.

    Liked by 1 person

    • Thank you for commenting and for your suggestions. I’m so sorry you’ve been through all this. I’ve had a hysteroscopy, which has shown no anatomical issues, but never had a biopsy and never heard of ERA before. Is it widely available? I’ll surely look it up. PGS is not allowed here, but I’ve thought about doing it abroad if I need to have another cycle of IVF. I have six frozen blasts now, so the plan is to do a FET soon. Thank you for your encouragement, I’m tired of unhelpful doctors, if this one offers me nothing, I’ll go abroad for care. By the way, I hate how they dismiss my ectopic loss and thus say I’ve had ‘only’ 3 miscarriages! Have you experienced that too?

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  4. How frustrating! I remember feeling that sense of hopelessness/despair after my third miscarriage:( I commented a few months ago about my story and really believe that you should at least try going gluten free for several months. I am convinced that it is one of the biggest reasons I finally got pregnant anf had a baby (actually 2 just 16 months apart!) after 6 years of losses. I do not have celiac disease, but i do have Hashimoto’s and am definitely gluten sensitive. I also cut out dairy and had allergy testing done. I cut out everything i was allergic to and I believe it made all of the difference (after 7 failed iuis and 2 failed ivfs). Diet can be huge. Best of luck and please feel free to contact me if you ever have questions!

    Liked by 1 person

    • Thank you for sharing. I’m seriously considering going gluten-free. It won’t be easy giving it up, but if I’m willing to try if it helps. I’ll probably start with gluten and maybe remove dairy later on too. I’m so glad to hear you managed to have two children, it gives me hope!

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  5. WTF? Tender loving care? That should be given regardless, and why add random treatments as the miscarriage number goes up? I think that’s a little sketchy, as while I believe in treating things that need treating, I also don’t think you should just give people meds with no rational (that’s the nurse in me speaking out). Hopefully he will have some better insight for you at your appointment, and once you get the results of your tests.

    I’m sorry you are back in a funk. This is a really awful thing to be dealing with. Sending you love and hugs, and remember to be kind to yourself. It’s ok to be sad. This is a very devastating time in your life.

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    • The engineer in me agrees 100% with the nurse in you! I’m hoping these examples he gave are simplified for layman eyes and he has better insight than that when actually choosing the treatment protocols. But I guess I have to wait and see.
      Thank you so much for the support too, I know I’ll manage to get back on my feet soon enough.

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  6. That’s deeply troubling and disappointing. I would be in a pit of despair too. I think your funk is a normal response in all of the circumstances. Does this doctor include natural conceptions and IVF transfers with blastocysts in the same way when adding up failures to get to 3=do nothing? I want to scream for you.

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    • Thank you for saying this! Somehow it makes me feel better to think that I’m not totally overreacting.
      In his 3 = do nothing example, he didn’t make a distinction between IVF or natural conception. But in the case with 5, it was either 5 naturally conceived or 3 losses with IVF. Not sure how he will mix the two, as in my case…

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  7. Having RPL myself, your post was disheartening to read and so I can only imagine how discouraging it was to be there. Thank you for posting though, as it gave me lots to look into.

    Also, I had to delete my old blog (Waiting for Baby Bray) but it is up again at livingwithbabyloss.wordpress.com if you are interested. 🙂

    Liked by 1 person

    • I feel a little better now, I think the support from this community has helped me a lot!
      I’m glad you found something useful in here, hope it helps you! And it’s great you managed to keep sharing your thoughts with us, I’m already following you again!

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  8. Ah, I’m sorry to hear you’re in a funk. It sounds bit like how I felt when I started looking at cycle 2. And truth be told, I’m a bit scared I’ll feel the same as you after my appointment with the RI clinic. I think right now I’m sort of pinning all my hopes on it. And I don’t even have 3 miscarriages or RPL because I’ve never managed to get pregnant on my own… I hate how people diminish infertility and loss, as though one loss or years of infertility isn’t worth investigating!

    I’m really similar to you in that I want to find out a reason. I just don’t know if there are places out there that do it… I really hope that you get some good news soon. X

    Liked by 1 person

    • Thanks for your kind words!
      I’m really looking forward to hearing about your consult with the RI, as he’s in my list of possibilities (UK being so much closer and easier as I don’t need a visa). I think being a private doctor he probably offers more testing and more treatment options. I really hope he can help you! Let me know if you like him!

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      • Don’t worry, I’ll definitely let you know how it goes! I think it’s quite controversial really so I’m interested to know what it’s like. I have heard good things though. We shall see!

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  9. I’m sorry you’ve been feeling low since your appointment. I understand why you would feel that way. I can’t believe “TLC” is what they offer as an option in a situation like that, so incredibly frustrating indeed. That makes no sense to me for the reasons you’ve stated and others before me. But, like you noted, you have choices. It may seem daunting but I firmly believe you will have the family and child you desire. xxx.

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  10. After 3 losses, I would be hard-pressed to just “try again” and hope for the best. I had 2 naturally conceived losses and then 1 FET loss (which included intralipids and Lovenox), and after that 3rd loss, I started exploring adding alternatives to standard IVF treatments. We went on to endure 3 more losses before having our daughter, and ultimately what seemed to work for us was an FET with IVIG and LIT. We did FET/IVIG again to get our son, but didn’t need LIT that time according to the RI. Our RE called IVIG “voodoo” and LIT “double voodoo”, but at that point, I didn’t care. I just wanted to know that I tried everything I could.

    I hope you are able to reach a choice about treatment that you are comfortable with and hopeful about, and I hope that this year is the one that results in you holding your baby in your arms.

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  11. This is so frustrating! I really feel for you. I’m usually in favor of total candor, but should you perhaps just say that you’ve had 4 losses? Perhaps a recent, spontaneous one that is not part of your medical records? Just trying to think out of the box!

    Sorry you are so down!

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    • Thanks for trying to help, it’s really appreciated. The doctors won’t usually consider my first loss because it was an ectopic pregnancy, not a miscarriage, so they only count me as having 3 miscarriages. It feels unfair, especially because they can’t be sure they’re unrelated. Anyways, I’d rather find a solution without the need to lie, so I’m looking into having a second opinion from another RI. We’ll see how it goes! Thanks again for your support!

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  12. Pingback: Appointments and more appointments | Recurrently Unlucky

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