Desperate after infertility and miscarriage

(40 Posts)
Catlover2014 Fri 02-May-14 21:09:44

Hi everyone,

I'm new to mumsnet and have always been scared to come on here before but now I'm desperate and need some advice.

Me and DH have been TTC for four years with lots of tests, operations, drugs and problems.

In October I had my second hysteroscopy and was prescribed progesterone. After almost 4 years we finally got our BFP! But a nine week scan showed a mmc and we were devastated.

I miscarried naturally, albeit with need for some hospital treatment due to blockage and blood loss.

Then a month later we conceived again. Went for a six week scan all fine with heartbeat etc then woke up Friday morning at 11 weeks to find some light spotting. I had a scan and they confirmed another mmc and carried out a D&C on Monday.

All my friends and family are having babies and I feel so left out / left behind. So desperate to have a turn in fate but I turn 34 in a few weeks and I'm a total wreck.

Can anyone tell me how to pick up from here? What can I do next? Feel utterly desperate and so depressed sad

Xxx

Catlover2014 Sat 03-May-14 20:45:59

It's so good to know I'm not alone and that others have felt the same way. Thanks knittingrocks for sharing and being honest with me, does help! X

I remember those feelings too Cat, and I remember on my darkest days begging him to find someone he could have kids with sad. It hurts so much to see them hurting too x

Catlover2014 Sat 03-May-14 17:31:49

Yep off for a walk together now hehe.

DH is a great man, just doesn't deserve this. He'd make a great dad.

XxX

My cons didn't buy info the NK cells thing but I did take aspirin for my 3rd & 4th pgs.

As for the emotional side, that's much harder and very personal. I found with a few honourable exceptions that most of my friends and family were clueless about supporting us. I got most of my support from dh and we spent a lot of time together talking, walking and crying. Your feelings are so normal x

Catlover2014 Sat 03-May-14 16:16:07

Bakingtins, congrats on being 35 weeks!!! You must be over the moon after all you've been through. So nice to hear good stories.

Thanks for the information too. There's lots I don't know about there and plenty to think about which makes me feel a bit better.

I will see what FC says and will probably see Quenby too. I certainly won't be ttc for the next few months. I'm just shattered!

Thanks for understanding my anger too. Speaking to such lovely people on here has made me realise there are other 'good' people who are going through or have been through the same kind of pain.

XxX

bakingtins Sat 03-May-14 14:34:27

The NK cells tests are not covered on the NHS. Her other area of research is poor decidualisation affecting implantation, treated with progesterone. She runs a one stop implantation clinic at University hospital in Coventry which is a consultation, scan and uterine biopsy and 'scratch' for £350, and you can self refer. You need to be 2 cycles post MC and not pregnant, and she sees you 7-10 days post ov.
The treatment she recommends tends to be a combination of progesterone, clexane ( heparin injections) and prednisolone ( steroids) all of which my GP prescribed on the NHS.

The anger is a normal part of grieving, and because it is bloody unfair that you should struggle so much when other women do 'everything wrong' and pop babies out left right and centre.

I was in a similar position last year, after 3MC I had NHS tests that were all normal, then had a 4th MC. I took the summer off TTC and went to see ProfQ and I'm now 35 weeks pregnant. A break from the treadmill of TTC for a few months whilst you have tests done will do you good. Pursue both angles though, because Prof Q doesn't do the standard blood tests and most doctors won't look into the immune issues.

Catlover2014 Sat 03-May-14 14:10:35

Should I maybe send an email to Prof Quenby? How do you get to become her patient? I don't suppose two mmc are enough!

Thank you all for information. Lots to think about, I've started a list because I can't take much in right now haha!

Does anyone have any tips on coping emotionally? I feel so angry today. Horrible sad

X

RawCoconutMacaroon Sat 03-May-14 12:42:16

Oh yes I was trying to remember what else id been advised to take - vit D3 (that form is more easily absorbed).

I was already on pharma-grade fish oil.

freelancegirl Sat 03-May-14 11:19:46

Yes Raw, the killer cells approach is all about autoimmune - the body attacking the foetus as a foreign object potentially causing difficulties getting pregnant as well as staying pregnant. Aspirin - low dose as you say - has been part of my treatment as well as extra vitamin d (on top of what's in standard pregnacare plus omega 3 - also immune modulators. Baking and I have also been on steroids, part of the treatment under people like prof
Quenby and Mr Shehata. We are both often to be found here pointing people in the direction of this simple but effective treatment. Of course it's not going to be everyone's issue but I'm so glad I found out about it here!

bakingtins Sat 03-May-14 10:30:29

catlover I'm a patient of Prof Quenby for recurrent miscarriage and have a high NK cells diagnosis (though without the fertility issues) and would be happy to answer any questions. freelance and I also both post on a thread on the conception board called "TTC or pregnancy on prednisolone" where there is a lot of knowledge about immune issues if you want to ask any questions there.

RawCoconutMacaroon Sat 03-May-14 10:21:32

Talk to your consultant of course, but both are available OTC (I did get a prescription but for some reason the 5mg tablets were not available in the first couple of chemists, so I ended up buying the normal ones and having a handful to make up the dose).

FREE, I think killer cells (part of the immune system) was one of the things that my consultant was talking about... But he said other blood clotting factors he couldn't test for so a negative wouldn't change his recommendation to go on the aspirin/ high dose folic acid.

My understanding is the aspirin reduces the rate at which the immune system attacks the placenta? The placenta gets tiny clots in it that gradually stop it working I think. Anyway important to stop it at about 30 weeks, as it makes the blood clot less well and that would be more risky at the birth.

Catlover2014 Sat 03-May-14 10:06:34

Hello RCR. Lovely to hear your story and congrats on your baby smile

I have thought about gluten free before now as I suffer with IBS and wind (especially on days I've eaten lots of bread). Certainly can't harm to try can it?!

I think FC might be suggesting aspirin (have to wait for his letter to see) and I was already on folic acid but will try a higher dose.

I'll try anything to be honest!

Xx

RawCoconutMacaroon Sat 03-May-14 10:01:58

Catlover, sorry you have been through this, I have had similar losses at up to 13wks, apparently normal (scanned, seen moving etc), but something went wrong.

I'll tell you my experience, and make a suggestion!
I saw a consultant, top person in our area for "old" mothers (I was over 40).

He said as we get older, we are more likely to have autoimmune factors, some of which he could test for, and some of which he couldn't, so he recommended the following to all women with similar loses, especially if older, and claimed "good success" with his "older mothers" (I guess that probably means anyone over 35?).

I was to start 5mg folic acid per day (a very large dose), while TTC and until mid pregnancy.
Mini- aspirin every day from the day of positive preg test to 30wks preg. I think they are 85mg tablets (equivalent to about a 5th of a normal aspirin I think).

My next preg after starting the above, was successful, at age 42. Those medications are both anti-inflammatory so they are dampening down immune responses within the body.

After DS was born I continued to suffer health issues which in retrospect, were almost certainly autoimmune in nature. After going Gluten free all of these issues have resolved.

My suggestion is this (because you mentioned pcos and a couple of other things), something that can do you absolutely no harm, and might help you, is to adopt a gluten free/wheat free diet... Many people with pcos and other inflammatory autoimmune related conditions have found gluten free/wheat free a big help.

If you are interested, in trying it, google "whole30", and/or read Marksdailyapple blog (it has a searchable archive with lots of info on exclusion diets, fertility).

I know it's not going to help everyone, but maybe worth giving it a go?

Catlover2014 Sat 03-May-14 09:40:35

Agggh my last post got lost!!

Solaia, I was waiting for IVF when I found the drugs I took to get BFP so you could get your baby before IVF anyway. Do they know why you're struggling to conceive? Feel free to PM me anytime, we'll prop each other up.

Madrigals, thank you for your lovely message and for your support. I'll order that book for myself, think it helps just to feel like I'm doing something to be honest!

Xxx

Catlover2014 Sat 03-May-14 09:35:42

Solaia, so sorry you're upset sad BUT maybe you'll get pregnant before IVF. I was on the list when I got my BFP!!! I'm glad you're doing this in your 20s though. Hopefully they will help you to get your baby soon. I am told IVF success rates are getting better all the time!!! PM me anytime, we'll support each other through.

Madrigals, thanks for the hug and book recommendation. Having something to read will help me feel I'm doing something positive at least.

You're all such lovely girls and I really appreciate all your responses. It's nice to know I'm not alone!

Xxxx

Catlover2014 Sat 03-May-14 09:23:57

Gwlondon, thanks I will ask my dr about that!

Freelance, I live in the midlands so will look up Prof Quenby!

XxX

Madrigals Sat 03-May-14 09:21:43

I am so sorry to hear about your losses sad

you may want to read Lesley Reagan's book about mc - I got my copy on Amazon after my mmc and it explains why statistical two mc doesn't mean you will definitely have another mc. I found it reassuring. She also has a section at the back about the percentage of even recurrent mc sufferers ultimately who go on to have dc and it is very high.

I just wanted to send you huge hugs and say I hope you get a bfp again soon and that this is a sticky one xxx

Solaia Sat 03-May-14 09:17:25

We were referred in February and they have a twelve month max waiting list so hopefully we will start the process around Christmas. I'm completely in denial about it and think it must be happening to someone else! I'm in my 20's, this isn't what I expected!

I'm feeling a bit teary this morning so I sympathise with you crying last night. It is hard to be strong about something for years on end. Do you have support from your family or friends?

At least it's Saturday and maybe the sun will decide to come out. smile

Catlover2014 Sat 03-May-14 09:15:57

Hey knittingrocks smile

What an incredible story!!! Thank you so much for sharing. That has made me feel much better.

I know I have to just hang in there. I guess yesterday was just my low point and maybe there are better times to come.

The fc days he can and will get me a baby so I have to try to trust in him don't I?!

Xxx

freelancegirl Sat 03-May-14 09:14:26

Have you looked into natural killer cells theory? I had 4 mcs before my DS after finding treatment. I found out about it through the recurrent miscarriage thread here on mumsnet and firmly believe that without it I wouldn't have my DS. You can ask for a referral via your GP - they might be willing to by pass the usual 3 miscarriage in a row rules - and ask to see Mr Shehata on the NHS at Epsom or St Helier hospitals in Surrey or see him privately at The Miscarriage Clinic in London/ New Life clinic in Epsom. I went privately as I was 37 and wanted to move quickly. He has around an 85% success rate which is amazing seeing the people who have found his treatment have often been trying and failing for years and are by that time getting older too. Professor Quenby is also testing and treating for high natural killer cells in the midlands.

I also saw St Mary's recurrent miscarriage clinic on the NHS but to be honest they concentrate very much on blood clotting issues and if you don't have any of these they often can't do anything for you.

Good luck! Fire away if you have any more questions.

Gwlondon Sat 03-May-14 09:13:26

It is hard. Be kind to yourself.

Gwlondon Sat 03-May-14 09:12:49

When they check for pcos they also look at some other things. My fsh/lh ratio was fine. My problem was with shbg (sex hormone binding globulin). But your doctors will be figuring out what you need. Good luck.

Catlover2014 Sat 03-May-14 09:12:41

Better get a big bowl for breakfast then hehe! Xxx

Hi Catlover, I really feel for you and remember your pain so well.

I had been ttc for 3 years and was overjoyed to conceive on our 1st cycle of IVF - only to lose our twins at 7 weeks. Conceived again on 2nd round of IVF only for the same thing to happen.

It took me another year to pluck up the courage to go again and then I had only one embryo - incredibly it implanted but I bled throughout my entire first trimester. That plucky embryo will be 6 next month and when he was only 7 mths old by some miracle we conceived his brother who will be 5 in the Autumn.

I'm not going to give you any platitudes but equally want to reassure you your journey is far from over and wish you all the best x

Catlover2014 Sat 03-May-14 09:11:28

Solaia, thank you so much for your kind comments. I'm so sorry you're waiting for your BFP. When do you start IVF? A girl I know has recently had a baby from her IVF and she's over the moon so do hang in there!!!

Bakingtins, thanks for the invite smile I will join you on there then! Yes I have had a scan on my ovary and all looks fine. Will ask my FC again when I see him. It just kills me to not have a diagnosis if that makes any sense.

XxX

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