Hello, I'm new to posting on these boards, but I've been reading them for a while. I apologize in advance for the length of this post.
I currently have four beautiful healthy children, ages 14, 12, and 11 year old twins. I had all four of my children by the time I was 22, and they were easy, uncomplicated pregnancies. My twins had the lowest birthweights, but I carried them to 38 weeks before I was induced. My boy twin was 6 lbs, 13 oz, and my girl twin was 6 lbs, 11 oz. Even though my son (second twin born) was breech, I delivered him vaginally with no other complications. The day after my twins were born, I had a tubal ligation.
After the twins I struggled to lose the weight, and eventually I ended up having to have surgery on my esophagus. The inability to eat actually enabled me to drop about 100 pounds. After I lost the weight, my cycles became regular and I had a spontaneous unplanned pregnancy in July of 2014.
I was monitored closely by my OB and even though my hcg beta quant only made it to 800, they were able to verify that the pregnancy was in the uterus. We never got a heartbeat and I ended up losing the pregnancy. All of it was a shock and a surprise and I realized that I really do want more kids. My OB said that it was probably a freak occurrence and that I shouldn't hope for it to happen again. She referred me to a fertility specialist who ordered a ton of tests, and determined that my left tube was actually open, at least partially based on an hsg. My ovaries seem healthy to say the least, especially for my age. I'm 33, and I typically have about 30 follicles on my left ovary and 20 on my right. My cycle is extremely regular with a length of 31 days. My ovulation is also quite predictable.
My husband and I continued to try on our own. Prior to May of 2017 and including that first pregnancy, we had 13 consecutive losses. None made it past 6 weeks, and only the first was ever seen on ultrasound. It was the position of multiple specialists that all of the pregnancies not seen on ultrasound were likely ectopic and that's why they were not progressing, but I had my doubts because I never had the severe pain that is supposed to go with ectopic pregnancies. I had multiple providers tell me to get IVF because they could ensure proper placement, but because of that first pregnancy and the number of losses not seen, I was too apprehensive about shelling out $20k without knowing the cause of the losses; I was afraid that I would just lose those pregnancies too.
Eventually I compromised and paid out of pocket to have my left tube repaired and my right tube reconnected in May of 2017. The surgery went well, my ovaries are healthy, my uterus has no fibroids or any other abnormalities, I don't have endometriosis, history of STI's, or history of PID. I was told by the surgeon who performed the surgery that my odds at getting pregnant are quite high- higher than 75%. With dye tests, the tubes seemed completely clear, and they have above average length remaining for that procedure.
Since May, I have had two more losses- in July, and I am in the middle of one now. The only thing any of the doctors have ever found is that my progesterone seems low for being pregnant, but they say that it's because I'm miscarrying. No one will listen to me when I say I think that the low progesterone is causing the losses because they feel that it's caused by the losses. My first sign to take a pregnancy test is not when I've missed the first day of my period, rather, it's when I break out in an unexplained rash on my lips.
I feel very strongly that I have autoimmune progesterone dermatitis, and that I am having a reaction that's causing my immune system to think that my progesterone is an illness, thereby suppressing it and making viable pregnancy impossible. I cannot get my doctors to listen because they believe it's all related to my tubal ligation instead; they are not citing evidence that there are blockages in the tubes (there aren't, at least none detectable on an hsg). They just keep telling me that APD is an incredibly rare diagnosis, so I probably don't have it.
I am losing my mind. I have been trying so hard for so long with this that I am emotionally, physically, and mentally exhausted, but I can't convince myself to give up on trying. I am constantly criticized by well-meaning friends and family members, who point out to me, "But you already have four great kids," or they say things like, "Maybe it's just not in God's plan." They don't realize how much these things hurt, and I don't have the heart to be angry at them about it, so I just stew. Sometimes I curl up in the fetal position in my closet with the light off and just cry for hours. For this pregnancy, I had a positive beta quant last week, then started bleeding on Saturday. I could not go to the ER because I live in Texas and with the hurricane, it just couldn't happen. I have even told anyone who knows me because so many of them have lost everything, so it just seems trite, or I feel like they'll just think, "You miscarried? Well, what's new?"
I don't know what else to do, or how to address this, or make it work. I am utterly at a loss. This week, even getting out of bed has been the hardest thing for me. I spent an hour wandering aimlessly around the grocery store this afternoon, not putting anything in my cart because I couldn't even convince myself to just make a choice on what to make for dinner. I'm just tired, stressed, and frustrated. A friend of mine keeps posting updates on her pregnancy on social media, and I keep having to bite back comments when she says things like, "We weren't planning on doing this so soon, but yay" with a pic of her BFP, or a picture of her holding her breasts while working out with a comment on how "uncomfortable it is to do this with pregnancy boobs."
I feel like a short-tempered, unsympathetic monster and I hate myself for it.
Re: Recurrent Pregnancy Loss - 15 consecutive
As for the friend issue. I have a SIL who is expecting in Nov. and I all but want to punch her in the face. It's childish I know, but I do. I hate her bump pictures and her whining about her pg issues. All I can think about every time I see another post from her is how I should be into my second trimester by now with a beautiful bump growing, and I'm not. I think that while we know we can't expect life to stop for those around us after we have a loss, it still doesn't mean you aren't justified in feeling the way you do. Also, know that there are others like us who are also wandering the isles. We're with you, you are not alone even when it feels like it. *hugs*
Coping with all of this has been excruciating, but I have a really great therapist, and she always makes time for me when I call outside of her normal hours.
I am scared to change OB because she practices at the hospital closest to me, so when I end up at the ER (this happens often) anything they do there is immediately available to her.
I am apprehensive about adding to the number of doctors I currently see, as right now I have a PCP, OB/GYN, therapist, cardiologist, neurologist, pain management specialist, and a reproductive endocrinologist.
My PCP manages symptoms and medications for anxiety and insomnia, my OB manages all of the pregnancy issues and losses, as well as chronic pelvic pain that no one has found a cause for, my therapist treats the anxiety with EMDR, my cardiologist manages a small defect in my heart and has already corrected it surgically (he's given clearance for pregnancy, so I'm good there), a neurologist that manages the migraines that present with aura with preventative treatments, the pain management specialist manages the medications for the migraines because of how Texas deals with narcotics, and the reproductive endocrinologist obviously manages the infertility.
I've been digging into the symptoms of low progesterone for a while now and what I'm finding in the research is that the symptoms are primarily irritability, anxiety, insomnia, migraine headaches, and infertility. I feel like I am a poster child for this issue, including the rashes I get when my progesterone tries to rise.
So the crux of it is that I have all these doctors managing their single specialty and really only treating the symptoms as they see them, but no one feels confident enough to give a diagnosis for a systemic problem because they don't feel like they have enough expertise in the other fields to make that call.
So, I'm wondering is it better to just try to insist to my OB that we should try treating it as an autoimmune issue, and avoid adding more doctors the mix, or should I look for a rheumatologist? Is there a better way to convince all of these people to work together and share notes?
Any and all input is welcome, because I'm at a loss.
If you really don't want to add another doctor, maybe you could write down a your symptoms and research you have found and give that to your OB or RE?
The two times I've been put on progesterone, my skin reactions have gotten worse, and the pregnancies held on a bit longer, but ultimately end up the same way.
I've had two of the pregnancies terminated with methatrexate at my OB's insistance (once she even had her colleague call me into the ER on a Saturday because she was on vacation) because the hcg beta quants were going up, then down, then up again, with the reasoning that it tends to indicate at least an "abnormal" pregnancy, if not ectopic, but I'm really starting to wonder if those are the ones that are holding on despite the other issues.
If so, that bothers me even more. If I terminated two that could have held on, it would destroy me. I cried for hours each time, and I don't think I'd do it again, not without seeing the location on an ultrasound.
I've never had to have a D&C; they've always just given a methatrexate injection when they've had the beta quanta be weird, and otherwise just tracked the blood work down to zero.
Anytime I have passed tissue large enough to be tested, they've sent it to the lab. Nothing has ever been found that would point to chromosomal issues leading to losses.
I have a follow up with OB on the 13th, and I'll push harder and see what happens. I suspect she will refer me back to a fertility specialist. That will be frustrating, because they'll push me to just do IVF. My insurance will cover one cycle, then one more cycle if that's unsuccessful, but I really don't want to use the benefit until they find a cause because I'm afraid of wasting it.
I do think an RE would be a good resource for you. Prog can't always guarantee a successful pregnant. Maybe you would just need to use something like clomid?
The only way it could maybe help is my triggering a multiple pregnancy, increasing progesterone to try to support each one, but only producing enough to support one, thereby losing the other.
As upsetting as all of this as been and as much as I want to have a pregnancy, that seems like a steep price to knowingly pay.
The thing is, you've had a crazy amount of losses and they're not doing anything to help find the cause. So, what if it worked? Clearly there's no guarantees, but what if? I don't blame you for not jumping on the IVF train. You aren't having issues getting pg, so why would they push that route?
I really, really feel that this is an autoimmune disorder related to progesterone production. The medical community acknowledges that autoimmune disorders cause recurrent pregnancy loss, and are successfully treated, typically with steroids. The only time women are typically tested for autoimmune progesterone issues is when it surfaces as dermatitis, and the treatment is to put women experiencing this on birth control that suppresses ovulation, so it is not surprising that there haven't been sufficient studies surrounding this particular disorder and recurrent pregnancy loss. I've already been tested for the others autoimmune disorders that are typically blamed (lupus, antiphospholipid antibody syndrome, etc) because it's recommended at three consecutive losses.
My PCP hadn't heard of it, and neither had my OB. My PCP acknowledged, after looking it up, that it does exist, and I need my OB (or, any OB) to get to the point of being willing to do something. I get that it's an incredibly rare diagnosis, but literally everything else has been done, and I feel like since prednisone and progesterone supplements are routinely used to treat during pregnancy it is not a crazy request. Don't they say, "When all other possibilities have been eliminated, whatever possibility is left, however improbable, must be the answer"?
It occurs to me, in this thread compared to other threads, that I read of women going through these losses, that I sound maybe overly clinical, maybe cold? I'm not sure. I sound, as I examine this from the perspective of someone who isn't me and doesn't know me and can't see my heart, that maybe I'm either more okay that I feel, or maybe even that I've lost it and descended into apathy. I haven't.
Every damn time I get that BFP, I have two parts of myself that speak to each other. The first is that voice of reason, "Don't get excited. Hope for the best, but you don't know what's doing this. You can't control the outcome because you don't know what's wrong." Then there's that voice of optimism, "Yeah, but... What if this is it? What if this time, it actually works out just the way it is supposed to? Or even just works out?" And then the excitement is there, to my chagrin, then when it all comes crashing down around, I question why the hell I would be optimistic about it. Why did I even bother to hope? And I never have the answer.
I'm to a point where I just want to remind all of my providers when they look at me like I'm crazy that they haven't offered me any alternative than, "Well, sometimes we never explain why this happens."
That isn't good enough.
It's not good enough for the medical community to not try to solve a very clear medical issue. It's not good enough for the scientific community and what we know about the natural world leave this question unanswered. It's not good enough for the parenting community to not demand these answers. "We may never know" is not good enough for me. It's just not.
At any rate, I go to my OB tomorrow. I'm ovulating now, and I will try to get her to prescribe these things tomorrow just to see if they work, and remind her that I seriously don't have much else to lose at this point. I'll let you guys know how it goes.
Thank you, btw, for reading all of this. I know it's just a lot and it really helps to finally get it off my chest, because anyone in person would just get uncomfortable. I really do appreciate it.
My best friend practically neglected her body her whole pregnancy, not taking vitamins, eating junk food and not eating at all, she didn't go to a doctor until she was about 32 weeks along just because she didn't care. Luckily, she had no major complications.
I know it's selfish of me to be jealous of her healthy happy daughter, whereas, I tried so hard and lost so early on.
Her daughter turned 10 months yesterday. If I would've carried to full term, my baby would have been born on the same day.
I never even told my family about the pregnancy or the loss... the pregnancy was unplanned, and I wanted to be sure I was ready to tell them, and I experienced the loss before I could tell them. For my next pregnancy, I plan to have them behind me no matter what. Currently. I'm not trying, but we plan to try within the next 5 years.
As for you, I pray that your find a doctor to listen to you. You deserve to have a happy, healthy pregnancy, as it sounds like you already a supermom. I wish you all the best.
Doctors are not Gods, regardless of how we'd like them to be. They're human and miss things too. I think you deserve to demand they at least TRY what you're requesting. It's your body, no one knows it better than you and for-crying-out-loud if you're right you could potentially carry to term. I think that's completely worth it. You have spent more time researching your symptoms than any one of your providers I guarantee it. Be your own advocate girl, if you don't no one else will. I genuinely wish you the very best of luck at your appointment.
She says she respects my not wanting treatment from a fertility specialist since I've seen three and first, none of them found any reason beyond my tubes that I could be losing pregnancies, and second, without knowing the cause of the losses, I'm right that IVF would be a large gamble without knowing what they're treating.
She was concerned about supplementing progesterone because she didn't know that I know the timing issues, and have a really solid understanding of my cycle. I told her what I would like to do is, each cycle, start 200mg compounded progesterone the day after ovulation, and on the last day of my cycle, if I get a BFP, continue, and if it's BFN, discontinue to let AF happen. Given that the risk of this is low and she knows I know how to chart, she's going to let me try it.
I didn't push the prednisone, yet, but I did push for her to research autoimmune progesterone dermatitis. We decided that in case I have some sort of dermatitis reaction to progesterone, set up an appointment now with a dermatologist who works closely with her so they can do a biopsy instead of a culture, which would give us a better idea of the type of cells that are going to the area. We will talk about prednisone if that becomes an issue, or if we continue to get losses with a normal progesterone quant.
My question for you ladies, is do you want me to update this if it is successful? I will if it's not regardless, because from experience, it was hard for me to find resources, and I'd like this available for women like me, but I understand that this may not be the medium to talk about a pregnancy that isn't a loss.
Or maybe it is, if it works and can give someone some hope. Either way, or you guys can just ask, if you want.
@vlagrl29 Has he looked at you ovaries via ultrasound and checked FSH? If so, did he say how many follicles you have on each one?
For example, I'm 33, so they would hope for 10 follicles per ovary. I have 20 follicles and the right, and thirty on the left.
It could have been tested with my CD3 levels back in December. I'll have to look for that paperwork.
I was supposed to schedule HSG imaging after my next cycle, but I have a (very) faint BFP.
My doc will draw blood in the morning, then again on Friday to look at the beta quant and if that is doubling, she'll repeat next Tuesday and Thursday to see if it still is. Friday night I need to be on a plane from Texas to Ireland for work, so hoping I don't have any emergencies abroad.
I will keep you guys posted.
I received a call with my results for the blood work from yesterday, and I had an hcg beta quant of 8. Since my AF isn't even due until tomorrow, that is actually not low, but my doc will want at least a 16 for the blood draw tomorrow. I won't get those results until Monday.
She also ran for serum progesterone, and that is currently much better than last time; in a normal range for first trimester at 15, as opposed to the 3-7 it's been in the past.
I woke up not feeling quite right, so took test and line was lighter and not darker. 30 minutes after that, I got aura that precipitates my migraines, then the worst migraine I've had in months, which typically happens when I have a sudden drop in progesterone. Went ahead and had the blood draw, but an hour ago, I started spotting.
I'll get the results on Monday, but I think just from having done this a number of times, it's a loss. I will let you know when I find out more.
I stopped spotting Friday night, and though I expected it to start again over the weekend, but it didn't.
My OB's office called and let me know that my hug value between Wednesday and Friday went from 8 to 39, which is actually really good. She wants to do another blood draw on Friday to see if it's a value where she could see a location on ultrasound, but with me flying out Friday night, I don't know how that will work.
Will keep you updated.
My OB ordered blood work for today to check my hcg beta quant and she put a rush on it so I could get the results before I board the flight to Dublin.
Hcg value came back at 1381 (up from 39 a week ago), which is excellent. I actually can't tell who is happier about it- me or her.
My "first OB appointment" (!) is scheduled for the 14th, and she'll do an ultrasound then in order to verify location.
I'll keep you guys posted.
Bhcg results are at about 21k, and we have a verified intrauterine pregnancy on ultrasound with a visual heart rate of 170 bpm measuring at 6 wks 0 days.
My doctor seems actively excited and optimistic with none of her usual caution.
I'm happy, unbelievably so, but weirdly, it still doesn't seem real despite seeing it and I feel like I'm still waiting for something to go wrong.
Am I crazy that I can't get excited? It's like I'm maybe relieved, but can't convince myself to get excited yet?
I'm so happy for you!