Some Information on our Local Reproductive Immunology Treatment Options
Based on our initial consultation with Dr. Braverman we have been seeking out information about the potential treatment options available locally. No thanks to our RE we were very fortunate to get a last minute cancellation appointment with an OBGYN who reviewed Dr. B’s findings and suggested treatment with us. Here is what we have learned:
- Endometriosis Surgery – we will not find a surgeon in this province who will do the surgery based on what Dr. B found. Here, they rarely do endo surgery at all, so it’s very unlikely they will do it for someone who is not showing any traditional symptoms. The one local OBGYN who has specialized endo surgeries would be incredibly unlikely to go near me given the complete lack of traditional endo symptoms (i.e. I have pain free periods). It is our understanding that the reason for this approach is not because of the limited resources in a public health care system, but because they work really hard not to do unnecessary surgeries both on the medical oath to not do harm, and due to liability risks of doing a surgery that does not appear as being a necessity.
- Endometriosis and RPL – Further, based on the prominent literature in Canada, endo is typically viewed as a leading cause of not being able to get pregnant, not a cause of RPL. This means, no local doctors will be influenced to do an endo surgery for us in hopes of improving our changes, as they do not see a link to our RPL situation.
- It was again reinforced to us that we should start taking it 4 days after ovulation.
- For a doctor to order IVIG locally, it is very complicated. First, they must have hospital rights. Second, it requires approval from Infectious Disease. Third, the only time IVIG is for pregnant women who contract chicken pocks. It has never, and will likely never be approved by Infectious Disease for our situation.
- While it is unlikely Dr. B will recommend we use interlipids, we will not be able to get interlipids here. We already knew this based on discussion with our RE and my local immunologist. It is not a product that is utilized here, so we simply cannot get local access to it. In fact, 2 of the 3 doctors have not even heard of interlipds.
- Absolutely take a low dose prednisone. Here it is common to use prednisone on someone who has lupus or sever morning sickness. There is a slight risks of cleft palate, which is correctable should it occur. Therefore, the potential benefits outweigh the risks.
- Restricted blood flow to my uterus. Here they don’t do doppler sonograms until 20 weeks, and only for people who have a history of preeclampsia or past low birth weights. Knowing the blood flow issue, the best approach would be a low dose heparin. There are no guarantees it would make enough of a difference, but it won’t hurt so it would be worth a try. .
- Poor pre-implantation lining. Estradiol (I think), may help my body develop a better lining prior to implantation. This may be something to consider if we try again. The drawback of this is that an RE will have to monitor my cycles to see what happens.
So, while we continue to wait for the final diagnosis and treatment plan from Dr. B, we have learned a few more things about the treatment that will be available to us locally. Probably the most important things we have learned are that a local endo surgery is completely off the table. Secondly, we will virtually need a miracle to get IVIG locally. Thirdly, we will not get interlipids in our province.
Honestly, we aren’t even upset with all this news. If anything, we are just happy to have more knowledge on our local treatment options. We are no worse off today than we were a week ago. So, really we are not upset by this news as it doesn’t change anything for us. And, if anything, we are relieved to know this now so that we will not get our hopes up, just to have them crushed in a few months.
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Although I understand you’re not upset because having knowledge of available treatment will lead to less heartbreak in the future, all of it still just sucks. I couldn’t think of a more tactful way to put that.. I admire you for your will to be your own advocate, I don’t know if I’d have the drive to do what you’re doing (at least not on my husband’s teacher salary). I’m just hoping there is a breakthrough in this for you. Maybe someone will do the surgery anyway? Maybe you’ll be able to get the treatment you need? Maybe someone will just come through?? I’m so hoping. Side note, we discovered that on a few monitored cycles, I actually had a problem because my lining was ‘too thick’. I wonder what they’ll find with you if they actually do the monitoring. As always, I’m wishing you the best. Hugs.
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I think you said it with the perfect amount of tact – it does just suck!
While we were fortunate enough to be able to afford getting the answer from Dr. B, we know it is unrealistic to expect that we will be able to afford IVIG and surgery in the USA. There is just no way we can justify spending upwards of $100,000 on treatments. And honestly, we are starting to feel broken and beaten by our medical system – this is a hard war to keep engaging in, and we don’t seem to be winning any of the battles (I am now picturing the US and Iraq, I don’t personally believe US is going to win that war…but I digress…).
I am starting to hope that our breakthrough will come to us in another means. Maybe adoption, maybe a surrogate or maybe just being okay with living childless. We definitely don’t have that answer right now on what we will choose. But I know the more information we get that clearly tells us trying again on our own is unattainable for us, then maybe our luck will pay off in a different form then we ever expected. Does that make any sense?
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I’m glad you are getting some answers…I wish they were more helpful answers, but none the less, at least you have some answers. And I totally agree with “A Calm Persistence”. 🙂
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Thank you for your support. The way we are looking at it right now, is exactly as you said – it’s just more information and more answers. And that’s not an entirely bad thing. 🙂
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It must be relieving to have everything laid out on the table. I’m sorry that the options are so slim for you, but I have hope that you will find a way to be happy no matter the way things turn out. Question- what if you are able to control/reduce some of these factors? Like what if you take the prednisone, heparin, and find some source of intralipids in a neighbouring province? What would your odds be then?
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My husband and I are both very relieved about our newly acquired knowledge – and when we focus just on that, it does bring us a lot of peace. And, the extreme disappointment of all the bad news coming at us, is feeling like a bit less of overwhelming load to be carrying around with each day. We seem to be processing it and moving into a bit more of an acceptance mode (for the most part).
Anyways, as for a partial treatment plan, we made the decision not to tell Dr. B about our financial concerns at this time. We wanted him to design us the full package (i.e. the porche with all the bells and whistles and upgrades). We wanted to know what he would recommend without any constraints to know what our best chances are. Once we see that, we can then start to look at downgrading and what the lesser options will do to our budget and our changes of success (i.e. will we just be designing the ford pinto which will allow us to drive it until it explodes and kills us all). That said, I suspect both my husband and I are prepared to walk away from trying again if we cannot do everything on Dr. B’s list – neither of us want to go through another miscarriage, and if we cannot afford the porche, we might just not be willing to take the ride. Honestly, for me, right now, it was one thing before to be willing to try again when we didn’t know the cause. But now, knowing I am unknowingly killing each one of our babies, I’m not really interested in trying. If I cannot at least give them a better chance at survival, then how can I be willing to do it both because I don’t want that the be a child’s short life, and I also just don’t know that I can experience another loss. I’m not sure I can emotionally play the game anymore when the risks are so high and the chances of success so unbelievably low.
All of this said, we wont make any final decisions until we know the final diagnosis and treatment plan options.
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Yes, I think I understand where you’re coming from, and if I were in the same position, I would choose the same. The risk of another miscarriage would just be too much, after all of this. When do you get a final diagnosis and treatment plan?
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Probably about 4 more weeks maximum until we get the final diagnosis and treatment plan. So for now, we just wait.
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Holy Ned. I’m glad you’re not stressed and I’ll try not to rant (too hard) but this really brings back the immense frustrations I had with the RFP in Calgary and their doctors. I fought them so hard just to put me on Medrol for 5 days between my retrieval and transfer. I then switched the Victoria and it’s been night and day. Calgary told me after one cycle that I likely had DOR and chromosomal issues without doing any testing nor were they willing to do any testing. I was told that I could do one more cycle if I wanted to but the results would likely be the same. And they were right – if I had have stayed with them, they would have been. Victoria – I didn’t even have to ask about immune or alternative treatments. Intralipids was automatically part of the protocol as was dexamathasone during stimming and Medrol during the FET. My cycles were completely night and day. I know you’re really hoping to find something local to your province but I highly highly recommend Dr. Hudson in Victoria (it’s $200 to have a Skype consult with him). He wants you to be an active participant in the process, he encouraged me to ask questions and after reading Dr. Beers book, I had a lot of them. Ughhh, I’m so frustrated for you…I hope my rant doesn’t bring you down and although we have totally different situations, I can empathize. (I have endo and it’s so incredibly frustrating that even within the literature, doctors know full well that a person can have stage 4 endo without ANY symptoms!!! Oh gosh…I’m getting fired up…lol…). If you ever want to email me anything privately, feel free to do so.
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What is your email address, if you don’t mind me sending you a private email?
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I filled out the form on your about me page (eager beaver over here) so hopefully that works?! If not, it’s iverson.kathryn at gmail dot com
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It is so nice having all the cards out on the table. And although you aren’t upset because it didn’t change anything you already knew, it still sucks and isn’t fun just having more confirmation that things will be difficult. Now I have always been told that endo CAN have an effect on RPL because it can effect the quality and quantity of your eggs. I had/have endo for many many years and mine was very symptomatic, but my RE recently did suggest that it does have an impact and can be a contributing factor to RPL. Endo is quite possibly the most frustrating! I’m so hoping something good comes from all of this. SO hoping! XO
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Thank you so much for sharing your thoughts and your hope too!
Dr. B made it very clear to us that endo has a huge effect on RPL, unfortunately the doctors here to do not see the link because the majority of the research indicates that endo effects egg production and therefore more traditional infertility where couples cannot conceive. Evidently the literature used here does not link endo to RPL, because ovulation is clearly occurring.
Regardless, I find the whole thing very frustrating, because my country/province/RE simply isn’t reading and following the most recent research! It is very frustrating!
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I do not have much input but I wanted to let you know that I have been thinking about you. You deserve answers and I hope you are getting close to them. I am glad you are being an advocate for yourself. That can be hard to do and I struggle with it.
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Thank you so much Jennie. I am so grateful for your support and your compassion. 🙂
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I wish there was more good news on the local front, but glad you have the information nonetheless. At least you know. It’s all so frustrating that there isn’t enough solid research out there supporting Dr. B’s findings and a more universal practice in place to allow you to get the treatments being recommended to you anywhere and without having to spend a fortune to do it. Praying this all leads to the right path for you in the end. I still believe you will have your family one way or another at the end of this road, and just praying the right solutions come to you soon.
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Thank you so much for your understanding and your encouragement about our future. Right now, I am just happy that we have more information and I am thankful that we will not spend time investing in hoping that our local options will be better then they are – because at least we wont be disappointed in a few months. Honestly, I’m sick of the roller-coaster ride, so I am happy we were able to avoid the hope/devastation cycle on this one.
I so hope you are right, that the right solution finds us asap! 🙂
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Just saying. Your periods do have some pain, right?
There is no scientific measure for what is “painful” FYI.
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I wish these answers led to more attainable solutions for you. Sending you strength as you weed through this knowledge and decide which path to take next.
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Thank you so much for your continued love and support!
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