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…