View Full Version : Fertility problems and pregnancy loss
Hi guys,
I just wanted to start a new thread about my various fertility problems, as it is the biggest cause of ongoing stress in my life and has now caused years of depression and anxiety.
A bit of history - I am 31 and have had three miscarriages and no live births yet. Two of my miscarriages were around 3 weeks, and physically quite straight forward, but one was at 13 weeks and was extremely physically and emotionally traumatic and required a lot of medical intervention.
Since then I've had many, many tests to determine the cause of my miscarriages. It was eventually determined that I have a hyperactive immune system which means that my body attacks the growing foetus. I will need to take steroids, anticoagulants, and intralipid infusions in order to suppress my immune system enough to maintain a pregnancy.
It was also found when I was 29 that my ovarian reserve was 8.9 nmol (1.2 ng) which is about the expected level of a woman of 40. That was almost two years ago, so goodness knows what it is now. It means that I have a smaller window of opportunity in which to fall pregnant than most women.
I've been single for 2.5 years now and so due to time being against me I decided to go ahead with IVF with donor sperm. I currently have six frozen embryos, which have all been tested and found to be chromosomally normal.
Unfortunately I have also just been diagnosed with toxoplasmosis, which can also cause miscarriage or severe health problems in a baby. Once the toxo infection becomes latent in theory it should no longer be a problem, but I'm a bit concerned that the next time I'm pregnant on steroids and my immune system is suppressed the infection will re-emerge and cause significant problems.
So that's something I'm going to be discussing with my GP tomorrow!
All I want is to have my own family. My only close family are my parents, who are 69 and 75, and once they're gone I won't have anybody. I can accept never having a husband or boyfriend but I want so badly to be a mother. I know I have a lot to offer a child. I've been working very hard to fulfill my family goals over the last few years and I'm just going to keep trying and trying until either I succeed or I know I have done absolutely everything possible.
Today I spoke to my doctor.
She said it was a shame that I wasn't told about the toxoplasmosis infection sooner, and instead had to wait six weeks for my follow up appointment to be told! But never mind.
I'm going to have a repeat blood test to see if the infection is still active. My lymph nodes are still up, three months on, so who knows. I'm off the steroids, though, so my immune system should be normal again now.
If the infection is still active, I'll need treatment.
My doctor also said she'd speak to the microbiologist and see if this is going to be a problem for me in future pregnancy when I'm back on the steroids. If the steroids suppress my immune system enough that the toxo can resurface then that would of course be dangerous for the baby.
Just one more hurdle to overcome!
I had my repeat toxoplasmosis blood test today.
Not sure how long the results will take.
I think they have to send the sample to Swansea.
There was nobody else getting their blood drawn at all. I just walked straight in. The nurse was pretty pissed about Boris' latest briefing.
I saw the letter from my consultant today following my discharge from the ENT clinic, when the toxo was first diagnosed.
The letter mentions that it's strange I contracted toxo, since I don't have cats, and that the infection is significant for future pregnancy and should be discussed.
My suspicion is that I probably first contracted toxo many years ago and then when I was on steroids recently my immune system was weakened enough to allow the infection to become active again.
But I HAVE to go on steroids in order to prevent miscarriage. But if every time I go on steroids I get toxo then I'll probably miscarry anyway, or have a brain damaged child.
I'm feeling quite down today. I am already facing so many obstacles to becoming a mother, and just as it seemed like maybe I had a plan in place to prevent miscarriage it turns out that the medicine in question may actually allow me to get an infection that will cause miscarriage.
It's too much. I really, really need a break. I don't have extravagant dreams - I don't need the perfect family - I can deal with not having a husband or boyfriend, I can deal with having a small extended family, I can deal with not having two or three children like I wanted when I was younger. Just one child would be enough. Just some sort of family.
I thought that once you'd had toxo you were immune to it and it couldn't be reactivated?
I thought that once you'd had toxo you were immune to it and it couldn't be reactivated?
Normally, but the infection can become active again in certain circumstances - such as if you're on immune suppressant medication.
Can you get a second, NHS opinion on whether you need to go on steroids to maintain a pregnancy?
Can you get a second, NHS opinion on whether you need to go on steroids to maintain a pregnancy?
Unfortunately, the NHS hasn't done much research into pregnancy loss. Tommy's, who are an NHS body, are currently undertaking research into reproductive immunology (which I participated in) but by the time immunological treatments become available on the NHS it will be too late for me.
However, my NHS doctors are aware of my immune treatments and approve. It is understood that certain immune treatments can help women whose immune systems attack their babies, even though such treatments are not commonly available on the NHS. My regular GP has advised me to take my fertility consultant's guidance on the matter.
It seems like a bit of a gamble for me now, unfortunately. Either way, I'm risking miscarriage. But if I don't try, I'll never have a family. So, I suppose I'll just keep trying.
Didn't your endocrinologist rule out an auto immune issue though?
Didn't your endocrinologist rule out an auto immune issue though?
No, he just said I probably didn't have Hashimoto's. So that's something.
My GP rang just now about the toxo.
She doesn't have all of the results back from my repeat blood test yet, but she agrees that in likelihood the toxo is an old infection and the steroids allowed it to reactivate.
So it might just happen again next time I'm on the steroids.
My GP will be speaking to the microbiologist at the hospital about my particular case to hopefully get a better insight. She says that between her, the microbiologist and my fertility consultant we'll try to find a solution that works for me.
When I have the full test results back I'll speak to my fertility consultant again, but she implied that we'll try the steroids again next time. I know I'm unlikely to carry to term without immune suppression. But if the toxo comes back again, I guess that's steroids out of the window.
Then what?
Sometimes it feels like I'm not meant to have a family. I really am trying the absolute best I can. I've done everything I possibly could, short of using a surrogate.
I feel very, very down at the moment.
My GP said not to give up hope yet and that sometimes women beat the odds and go on to have two or three children!
I'm going to keep trying. Perhaps the toxo is the final hurdle. I don't really know what to do, how to solve this, no matter how much I think about it, so I'll just take it one day at a time for the moment.
I've had some more results back. Takes a very long time to test for toxo, apparently!
The results still show 'strongly positive', at 1000 iu/ml. I'm speaking to my doctor tomorrow.
The results say to delay pregnancy for at least six months from the time that symptoms end. I'm not sure whether the lymph nodes count as symptoms. They're still up, slightly, but I wonder whether they'll stay up forever. They're much less noticeable than they were.
Either way, another six months minimum until I can have another shot at being a mum. It will have been four years of trying by then. Realistically, I'm not expecting my next attempt to go very smoothly either. I don't know what else to do, though.
Feel a bit lost.
WiseMonkey
29-05-20, 04:55
Hi, six months is a short period of time and you're only young (still 30). I did mention that my daughter (35) is now having a baby but she had a miscarriage last year. She has her own issues endo, PCOS, only one functioning ovary, periods all over the place, IBS, stomach issues to name a few, and was told to have eggs frozen 8 years ago, before she headed overseas for her OE. She ignored this and has beaten the odds by conceiving and keeping this baby. She's 32 weeks.
She did however wait until she met her current partner and got a home sorted, before taking this step. They're not married but are in a committed relationship. My daughter had been engaged many years ago and owned a home with her previous fiance who was also lovely but was wrong for her.
So you see things aren't all doom and gloom and the odds can be beaten. Keeping upbeat, focusing on your career and dating (and finding a life partner if that's what you'd like) should take priority in your young life. Good luck with it x
It’s hard I know. I tried to get pregnant for about 6 years, and I am “older” so our egg counts are probably similar. Still, it did happen. It often takes a long time even without problems.
vanessajayne
29-05-20, 11:22
have you thought about ivf?
Thanks guys.
Glad things are going well for your daughter, Wise. My doctor did say that women did sometimes beat the odds if they didn't give up. I'd love to find a boyfriend and even get married and have a proper family, so I'm keeping up with the dating. I've even been doing socially distanced dating! I'm definitely hoping I'll still become a mum even if I don't meet someone though.
Vanessa, I have actually done IVF. That's the route I'm going down if I don't meet anyone. Unfortunately my problem is more to do with carrying to term, and IVF can't fix that - though my doctors do have medications for me to take to improve my chances.
I know you want the experience but what about adoption if physical pregnancy and birth are not feasible due to health issues?
Positive thoughts
Hi Fish, yes, possibly. Although I don't exactly see adoption as an alternative to having my own children. It's just... a different thing. A good thing, but different. I think I could definitely help an adopted child, as I'm financially stable and in a good environment, and I might consider it for that reason.
My doctor rang today.
My IgG and IgM toxoplasmosis antibodies are still present, as expected. Eventually, the IgM antibodies should vanish, at which point it should theoretically be safe for me to try for another pregnancy.
We're still not certain what will happen when I go back on the steroids for my next pregnancy.
However, my doctor has said they still have some of my blood in the lab from 2019 and they're going to test that for toxoplasmosis! This is great news, because we'll then know whether my infection was new or whether it was a reactivation of an old infection.
Hopefully it's new, which means that once it's died down it might be gone for good.
What seems more likely, though, is that I picked the toxo up as a child and going on the steroids allowed it to reactivate. It is an opportunistic infection, after all. In that case, it seems logical to assume that the infection will come back again next time I'm on steroids.
So, I'm just waiting on those results from my 2019 blood now. I'm not sure how badly affected I will be if they show it's an old infection.
Your doctor sounds great.
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Your doctor sounds great.
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She's very nice! I feel like she really wants to help me, and that she has a lot of empathy.
I just had some really good news 🙂🙂🙂
The toxoplasmosis results from my 2019 blood came back negative!
So, it was a brand new infection I contracted recently - goodness knows how, as I hadn't been near any cats.
That means that hopefully now I've had the infection it will never come back - which is the usual response. There is nothing to suggest that going on steroids to weaken my immune system will reactivate the infection.
Really brilliant news, because it means I can go on the steroids for my next pregnancy, to hopefully keep my immune system from attacking the baby, and there is no reason to believe that the toxo will reactivate and negatively affect the pregnancy.
I am so happy! It is such an unexpected result, as I was not at risk for contracting toxo so it's really strange I managed to pick up a new infection. I've no idea how I got it, but hopefully it'll go to sleep now and I won't need to worry about it again.
Oh that’s great news, I’m really pleased that you can move forward [emoji4]
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Oh that’s great news, I’m really pleased that you can move forward [emoji4]
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Thank you!
I've had some malaise over the last few days, feeling a bit light-headed and weak with a bit of a reedy heart beat.
It feels a bit like when I first came down with the toxo four months ago.
Also, the side of my neck with the nodes was feeling a bit sore and I touched it and there is one node which feels quite prominent. I'm not sure if it's new or if it's just one of the old ones.
I'm worried that the toxo isn't going away like it's supposed to. If it doesn't go away I can't have a baby.
Another of my childhood friends, who is younger than me, just announced that his girlfriend is pregnant. One by one everybody I know is settling down and having babies, even the ones who never seemed like settling down types. I don't know why the whole thing, every aspect of it, seems so difficult and out of reach for me.
I've been thinking about my next round of IVF.
I was wondering whether I might try a natural cycle next time, which means they sync it with my natural menstrual pattern rather than controlling it with drugs. It seemed that last time unfortunately my body did not absorb the drugs properly so I didn't have enough progesterone etc to sustain the pregnancy.
I worry about my natural cycles though because lately they seem to be getting a bit shorter, which isn't a great sign.
I also always spot for about three days, give or take, before my period. I've never really had an answer to that, but perhaps that's a sign of dodgy progesterone levels too.
Also, my endometrium doesn't always reach optimal thickness. It didn't with the IVF drugs, either. They had to double my dose.
It's a lot to think about. It's so important. Financially, and in terms of the literal rest of my life and future happiness.
It's hard to think about all this by myself and make all these decisions alone. I wish I had someone.
Either way, with someone or alone, I know I've got a really hard fertility journey ahead, and I've already been on the journey for over three years.
Just thinking about it a lot today.
Hope everyone's ok. I'm doing ok. I moved towns to be closer to my parents and some of my old friends, and I've bought a house there. I've changed jobs too.
Feeling a bit down because yesterday I noticed an enlarged node on the left side of my neck.
The nodes on the right side of my neck had finally almost all gone after months, and my toxoplasmosis IgM antibodies went negative. It meant I could try again for a baby, although I'm having some blood tests soon to try to work out why I have hyperpituitarism which could well be linked to my miscarriages.
However, now this new node is up I'm guessing it means the toxo is back. I'm going to try to have a blood test this week.
If my toxo just keeps coming back it's going to make carrying a baby even harder for me.
I wish I just had one fertility issue I could focus on, but I have so many! Sometimes I do feel like it's time to let go the whole baby / family thing. It's hard, though, when it's the thing I've wanted more than anything for so long, and the thing I have put so much time and energy and money into pursuing.
Anyway, just trying to crack on with work and chatting with my friends and stuff in the meantime.
My blood test result came back and the toxo hasn't returned! Still dormant. The node went away after about a week, so it was just a random node, I guess!
This weekend I am going on a second date with a man.
All sounding good! Enjoy your date.
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Unfortunately we didn't make it to a third date, but no harm in trying eh! I've sort of paused the online dating for a while now as I've been doing it for over three years and it's getting a bit exhausting.
I've been thinking again about having another embryo transfer but I don't know if it's the right thing to do. If I did it this year and it worked I'd be 33 once the baby was born, which I suppose is a good age, but in a way it seems selfish to try to bring a child into this world when its only family would be me and two elderly grandparents.
I still don't know what the root problem with my endocrine system is, and I doubt I'll ever know. My endocrinologist is talking about doing another MRI but I'm not sure there's any point. There's something wrong with my pituitary or my hypothalamus, which affects my fertility pretty badly, but the treatment probably isn't going to change even if they see something on the MRI - I'll still be given steroids, intralipids, and anticoagulants during pregnancy.
I'm fortunate that thus far only my fertility is affected and otherwise I feel basically fine physically.
Sometimes I think that none of it really matters, and my focus should just be on my parents and making sure they're ok in their old age. They're 71 and 76 and I know they worry about me, especially my dad. I wish they didn't. They shouldn't have to be worrying about me at that age, they should just be able to chill. I just want to make sure they're looked after.
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