Not sure where I belong anymore...

(17 Posts)
belkins Tue 29-Dec-15 18:15:47

This is just a self indulgent rant, to stop me from ranting at the wrong people IRL so I don't expect any replies blush

I'm 36, I suffer not only from PCO but also recurrent early miscarriage (have had 8 now).

Have no kids, husband left me a few years ago after he managed to get someone else pregnant (oh, the cliche, whilst I was going through ivf). ^
^
Obviously, at my age all my friends are having/have had children. Conversations revolve around children. It's natural, I get that. But it's bloody hard.

I do now have a lovely DP and we did a round of Clomid in Oct which ended in miscarriage (predictably). But I don't know where I fit anymore! Im turning into that women who tries to join in a conversation about baby led weaning with 'oh, my dog won't eat from her bowl at the moment, I think it's because I changed it to a ceramic one'. Met with confusedhmm

I'm not interested in going out to pubs/clubs, but nor am I interested in having my barren state inadvertently rubbed in my face every weekend.

Who am I?! Where do I go? confusedsad^^

belkins Tue 29-Dec-15 18:35:23

I should also point out that this isn't a rant against friends, they're all brilliant lovely people. It's about my inability to have kids.....

MrsChrisPratt Tue 29-Dec-15 18:44:21

It is really tough, I am 2.5 years in (male factor), 1 failed ICSI, 1abandoned ICSI followed by hospital stay for ohss/internal bleeding. Not fun, to say the least.

The question is, how far will you go, and would you consider other routes to motherhood?

You have a number of options - you don't seem to have too much of an issue getting pregnant, but do you have any kind of diagnosis for what's causing the miscarriages? Can you push for that?

How much more can your body/mind take? Can you plan a future without children? Would you consider adoption? How does your dp feel?

These are all the things we've been thinking about and discussing since I was discharged a few days ago- its so incredibly hard, you have my sympathy flowers

And just to make you feel more sane, I have a feline fur baby <cringe at that expression>

Chattycat78 Tue 29-Dec-15 18:55:47

It sounds awful- so sorry OP. I would be doing everything possible to solve the cause of the miscarriages. Hsve they investigated? I'm sure they have to after 3. I think there are tests and things you can Have. Apoligies if this is all very obvious and has been done but it seems so harsh - poor you! I also understand the not fitting in thing. I'm 37 amd there's mo way I would want to go clubbing either- or listen to constant baby talk - in that situation. It's very very difficult. I really hope u find a cause for the miscarriages soon. You can clearly get pregnant! I imagine this is no consolation to you right now though.

WootyWoo Tue 29-Dec-15 21:44:07

Hi Belkins, I'm so sorry you have gone through so much, that all sounds utterly heartbreaking sad I've had one miscarriage followed by years of unexplained. I can't imagine 8 of them never mind a marriage breakdown too.
Well done for staying strong and still sounding sane!

I feel like I don't fit in anywhere too and it's utterly soul destroying after a while. I feel like I get more and more reclusive. I have nothing helpful to suggest sorry. I need to have a miracle child or drastically change my life, I can't see it working any other way. I'm still working on the miracle...

Have you looked into immune testing? Many doctors think it's a bit hocus pocus but you seem to fall into the bracket where it proves itself - i.e multiple miscarriages. Sorry if you've looked into that already, best of luck to you xx

ChampagneTastes Tue 29-Dec-15 21:55:01

Belkins that sounds massively shit. I'm so sorry. And although I'm not in the same position, I do sort of understand. Another poster mentioned working out how far you are prepared to go, what you are prepared to do and I would echo that. Are you being NHS funded and if so, does it run out at some point? How far would your finances take you? Would you consider adoption or fostering (I KNOW it's not the same thing but worth a thought at least)?
flowers

belkins Wed 30-Dec-15 10:58:03

Thank you for your replies, sorry I posted and then ran last night.

You all make some very good points!

MrsChrisPratt these are the very things my DP and I have been discussing; just how far we will go. There doesn't appear to be an easy answer! Which I have taken to mean that we are not done trying yet. How about you? I'm so sorry to hear about your recent hospital trip. Internal bleeding? Sounds incredibly painful thanks

Oh, and my canine fur baby (yep, another cringe here!) was the cliche "let's get a dog to make up for the lack of baby". Luckily, she's pretty cool (rescue and 12yrs old now).

You're right Chattycat, you do get tested after 3mc, but unfortunately the NHS STILL weren't keen on testing me and when they finally did, they lost my resultsshock It was around the IVF/my husband leaving so I never followed it up...

Have since had tests privately which have shown nothing substantial - Champagne the NHS apparently would fund me through 2 more IVFs but I'm reluctant as their care has been substandard in the past. I've been seeing a private consultant who specialises in recurrent miscarriage. Had all basic bloods and scans with him and his prescribed plan of action is 6 rounds of Clomid and then reassess confused I even had to prompt him re the miscarriage treatment and he said 'oh, well I can prescribe you some progesterone if you think that would help?". Hmmmm, why is it I'm paying you literally thousands ££ again?! hmm

Wooty come join me in my new found interest of [yet another cliche] adult colouring in books! I swear I should be doing more with my life than this blush Immune testing is next on my list. I just can't quite gather up the motivation/confidence to do it yet.

Adoption and fostering have also been discussed, and definitely considered. I've read somewhere that you won't be considered for at least 2yrs since your last fertility treatment tho? Or if you've been on anti-depressants (my mum passed away not long after my H left, I was a mess!)?

Basically, I feel like I keep hitting deadends. I'm not ready to give up, but nor do I want to carry on fighting/chasing etc. And then I hit a spiral of despair and have to go seek out chocolate.

belkins Wed 30-Dec-15 10:58:49

Gosh, not sure if that was cathartic or not, but it was definitely long and wordy. Apologies blush

MrsChrisPratt Wed 30-Dec-15 11:27:14

We have some embies in the freezer so are going to use those first. Like you we've been pretty unimpressed with the NHS so are currently trying to decide if we want to use our final funding to do our next FET or just go private....slightly complicated by the fact that I am being made redundant in June- if our Pre-Christmas cycle had worked, the timing would have been perfect.

We'll review if we run out of embies and still aren't pregnant, but in my mind I think we'd do at least one more fresh cycle.

Adoption is something I would have been open to regardless of any fertility issues- it actually would have been my preference to do that first but Dh dearly wants a biological child so we decided IVF had to come first. We have somehow met in the middle with ours views converging through the experiences we've had- IVF has been easier than I expected (I was worried about mental/emotional issues) but harder than dh expected. He has experience of a family adoption going very wrong so was originally quite anti but is coming round to the idea on reflection and realising that things nowadays are quite different to the 80s/90s.

It is all so complicated and heart wrenching though, I just don't know what the right answer is, except to keep talking to each other and roll with the punches

Sounds like your miscarriage issues have not been properly investigated, and your consultant doesn't sound brilliant hmm I've found we really have to advocate for the treatment path we feel is correct which can be very frustrating. If you have the emotional energy I'd keep pushing on that issue, whilst potential discussing your other options as well flowers

belkins Wed 30-Dec-15 19:46:22

Ah, MrsChrisPratt I'm sorry to hear about the redundancy on top of everything else. Is it difficult for you to make future work plans whilst undergoing iVF? Or is it a chance to have something else to focus on (forever trying to find the silver lining!). I always found I put changing my job on hold "just in case"....

That's interesting re what you say about adoption. I've done a lot of reading up on it but I'm still slightly cautious, purely due to the time it will take if you take into account waiting for 2 (?) yrs from fertility treatment.

I often feel awful due to my apathy. It took me well over 10mths from initial consultation with the private dr, to actually starting the Clomid. I was just very disillusioned by the whole process. And I also struggle massively that we have to go through all this ("it's not fair"!). When I had the first positive pregnancy test this time, both my DP and I were so sad to realise our initial reaction was 'ok, let's just see where this goes', rather than anything approaching joy. I really need to organise to go back to the dr and ask demand the right tests. He was pretty positive regarding NK testing but cautious in suggesting it for me.

Thank you for sharing and listening. It IS heart wrenching, but it helps to know others are [sadly] going through the same.

Hope you have a speedy recovery after the OHSS thanks

BipBippadotta Thu 31-Dec-15 10:55:51

Hello Belkins, just wanted to pop in and say it is really shit, isn't it - knowing you're a charming, articulate, intelligent person, but there doesn't seem to be a social context anymore where that counts for anything, nor can you talk with any sort of authority (/interest) about reusable nappies and breastpumps. And even your best friends start to treat you a little bit as though you're not really a bit backwards and pitiable, asking patronising questions about your job, your pets, etc, without listening to the answers. It's awful. Where do we belong? Christ knows.

You've had some awful luck with your husband, your miscarriages, and your NHS and private care. It is incredible how little specialists seem to give a shit even when you're haemorrhaging money to them. My heart goes out to you. flowers

I can totally relate to losing motivation to follow up treatments, etc. Particularly when everyone fobs you off. And after so many losses, and so many appts with robotic doctors, you start to think, why do I keep putting myself through this shit?

As for recurrent mc tests - they wouldn't give them to me on the NHS & went private. Basically went to a private OB-GYN with a lists of the tests I wanted (researched on the internet) and said 'do these'. I think the trick is not to ask the doctor's advice, or expect the doctor to have any ideas of their own, but do your own research & tell them what you want done with the expectation that they will do it. You're paying for it, after all. It's no skin off their nose. Once you start asking their opinion they go into automatic 'no'-mode.

I got:

Full karyotypes for DH and me
Auto-immune testing (including NK cells)
Testing for blood clotting disorders
Private script for progesterone from luteal phase on

Not that any of that's helped yet, but hey.

Best of luck to you - it's a shitty situation.

belkins Thu 31-Dec-15 18:40:04

BipBippadotta that's exactly it!! There's only so many times you can feign interest/authority on baby related things. I LOVE my friends, and not all of them have children to be fair, but when the conversation steers round to children (inevitably), I want to join in but have no real knowledge (whilst inside I'm wishing I had first hand knowledge!). I feel like a fraud.

It just feels like everything is moving on but we're getting left behind, and we need to try and carve out a life that doesn't involve children. But how?! I can't get my head around it!

Your point re doing your own research and going with a list sounds eminently sensible. I might just borrow your list! I'm struggling to contact the private consultant as his last email said to just follow the advice of the (nhs) dr re the miscarriage, no mention of getting back to him in the future hmm

Are you going through treatment at the moment? Sorry to hear the results haven't helped thus far. Did you read the latest research about progesterone not actually helping with miscarriage outcome? Totally threw me, as that plus Metformin was all we were offered.

www.miscarriageassociation.org.uk/information/research/the-promise-trial/

Definitely need to kick myself up the bum and get on with the auto-immune testing request...

Best of luck to you and thank you for your sage words, I honestly felt so bloody alone in my thinking but I realise now just how many are also going through this.

outputgap Thu 31-Dec-15 18:58:27

Belkins, I don't understand why you haven't been offered aspirin and clexane the minute you get pregnant again. (If you haven't? )

I had testing for antiphosolipid antibodies at St Thomas'. And then at UCH when I moved. Both showed different positive tests, but basically underlined how tricky/erratic this testing can be. A few years ago I went for a consultation at ARGC and they simply give everyone clexane and aspirin. They said they thought the testing was so haphazard and unreliable that they dished it out to everyone.

And from the experience of friends, there is a very wide variety in the quality and nature of testing for blood clotting issues, so I would be really wary of gp testing, for example.

Have you had your thyroid tested too? Another area of surprising ignorance amongst medics. A "normal" result isn't actually good enough. You need tsh to be under 2.5 to get pregnant and to stay under 2.5 for you to stay pregnant. A private obstetrician I saw didn't know this.

Your consultant sounds shit BTW!

tldr Thu 31-Dec-15 19:08:59

Hello OP. I'm sorry you're going through this.

I would never normally jump on an infertility thread and start shouting about adoption (it's right up there with 'relax and it'll happen', right?) but since you've mentioned it already, I just wanted to say a couple of things.

Re the two year wait. That's not right. The assessing agency will want to know that you are over the need to have birth children and fully committed to adoption before you begin. That's mostly so when you come out the other end you're in a position to fully love your adopted child and you're not left looking at him thinking he's second best. Of course, it's also so they don't waste time and money assessing people who are not committed.

Where I've heard actual time periods it's been 6months or a year, not two. My own authority appeared not to have a fixed timespan though it was something we discussed with them. For me, it did actually take a year post final Ivf for me to get into the right place to be able to talk to adoption agencies.

Also, depression/anti depressants aren't necessarily a barrier either. Again the assessing agency will want to check that you're okay now, and that you're prepared and willing to accept help when you need it.

But there's not an age limit on adoption so you can think about all that stuff later.

Good luck. I wish you well. I know how much it sucks. flowers

(And if it helps, I'm now a mother of two (adopted) children, I still feel like a fraud around babies and I also colour in...wink )

museumum Thu 31-Dec-15 19:16:55

I feel for you and I know you really want to be a mother but there are many childless couples around if you want to broaden your social circle. We had our ds very late in life and are suffering from not being able to keep up with our childless couple friends. They do sports, have long walks outdoors with overnights in country b&bs where they sit and read by a roaring fire, they travel to amazing places, and tonight (Hogmanay) they'll be at a sit down dinner at a fantastic restaurant.
I know none of that probably sounds like consolation but there are social groups where you could forget about baby chat for a while, at least till you decide what you're going to do or until conception happens for you.

WootyWoo Fri 01-Jan-16 21:47:48

Hi Belkins,
I totally hear you on struggling with motivation and confidence to keep plugging on, and I totally get the hitting 'the spiral of despair' as you put it and reaching for the chocolate (or wine in my case...for extra despair and self loathing!), but I'll have to be honest...I've not reached the new lows of adult colouring yet... lol, just kidding. It actually sounds therapeutic!

I'm currently trying to drag myself away from boxset groundhog day and get back to that 5am exercise gal who manned up and guzzled wheatgrass shots daily (ugh). Or just something in-between would be great. Hope you get there too xx

BipBippadotta Sat 02-Jan-16 09:21:46

Hey Belkins - Happy New Year!

Re: progesterone - there's so much different research out there. Some say low prog is a result rather than a cause of pregnancy failure - but as there's nothing to suggest it does any harm, and I have hear anecdotal evidence of it helping in some cases of recurrent mc, I've been happier taking it.

Though tbh at this point I have tried so many things (no caffeine, no alcohol, no sugar, wheatgrass, less exercise, more exercise, acupuncture, Chinese herbs <boak>, every supplement under the sun, baby aspirin, Clomid, etc) that I'm confident whatever problem I have is beyond the reach of lifestyle changes and a bit of hormonal supplementation.

There's a big dollop of superstition in everything once you've gone through the trauma of losing a baby several times - however rational & 'evidence-based' you normally are. Particularly as nobody in the medical profession seems able to agree on what helps.

Except folic acid! If I have one more doctor cheerily reminding me to take folic acid - like might not have occurred to me - I will scream.

I should get results of our karyotypes this week or next. I think I am actually hoping to learn that we are genetically incompatible with reproduction, so that we can draw a line under all this and use our IVF savings to do something fun or constructive. I don't know about you but at this point the idea of having a baby seems completely abstract and impossible.

Here's to 2016 bringing some kind of resolution one way or another!

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