Recurrent Miscarriage Support thread 14 - tests, treatment, trying again

[Justonemoretime]

Information, support, hand holding, tea, sympathy and a hell of a lot of combined knowledge - all welcome as we try to make sense of the RMC roller coaster of tests, NHS admin, heart ache and (hopefully) happy endings!
Please start with a recap of your stats :)

Thanks very much and I'm sure I'll need all of the above at various stages.

Hi scarlet glad you decided to join us

Hi scarlet welcome to the feed. I am so sorry to hear about your mcs

How many have you suffered? How old are you and where do you live? How many weeks did you get to with your mcs?

I too have fertility issues due to hormone problems and have had two confirmed mcs as well as a suspected v early one. I'm coming up to 11 weeks pregnant now and am terrified of course!

The ladies on here can offer lots is great advice on how to get help with recurrent mcs. I can offer less on mcs but can share my experiences of fertility issues and matching that up with nhs pre-natal so feel free to ask away.

Hugs

XxX

I'm 36. The first was a missed m/c discovered at 14 weeks, measuring 8. I had an ERPC at 16 weeks. I waited a cycles and conceived again on the next cycle but had a natural m/c at 6 weeks.

I'm in Ireland, I think it's probably the same procedure in the UK, but they don't investigate recurrent m/c here until you've had 3. I wasn't prepared to wait. After my first m/c I did a lot of research, started temping and found that I didn't get much of a temp shift and had a short luteal phase. Through my research I came across a fertility clinic that didn't require 3 m/c's to investigate and booked in literally as I was having my second m/c.

I had day 3 and peak + 7 bloods take and discovered I was low in progesterone. I also had/have a tilted uterus. I did 3 cycles with Clomid, HCG injections and follicle tracking but nothing happened. Both other time I fell pregnant first month trying so that was a bit of a departure.

I changed to Femara, conceived on my first cycle and held on to that pregnancy. That was 5 years ago.

We decided to try again recently. I had peak + 7 bloods taken about 2 years ago which had come back normal and my short luteal phase had seemed to have corrected itself so we decided to give it a go, knowing that it could end up with a m/c but my GP had prescribed progesterone support so we thought we had all bases covered.

Well it was not to be and we lost this one at 10 weeks measuring 7. So here we are again. I'm booked back in to the fertility clinic. I should hopefully have had a full cycle since then and peak + 7 bloods so will know exactly what my levels are at that stage.

I'm a bit concerned that the progesterone didn't do it's job. The hospital are doing the genetic testing on the products of conception and will call me back to discuss, also probably in February and I don't know what direction they will take if it returns as hormonal as the same hospital were very dismissive of me taking progesterone during my pregnancy. I was surprised to get the attention that I did as they normally want 3 m/c's in a row before they make any moves so we will see. Right now I'm at the 'googling like a madwoman and waiting for cycle to get back to normal' stage.

Congratulations on your pregnancy. The terrified stage never leaves I'm afraid, I worried throughout my successful pregnancy and felt a bit robbed that I never got to relax and enjoy it the way other people do - miscarriage does that to you. But I got there, and hopefully so will you. I'd love to hear what support you are getting during this pregnancy.

I don't have any thyroid issues, don't have PCOS, though Clomid did seem to bring on a bit of PCOS. I've never had any other PCOS symptoms and the sonographer showed me my ovaries when scanning for my m/c this time and they were clear though she did say it wasn't the best time to be looking for PCOS. I've always had a regular 28 day cycle.

Thanks to everyone for the warm welcome.

Hi scarlet, welcome to the thread. Its a good place to be when you're in a shit place

Hi scarlet, sorry for your losses, and welcome. Disagreements between consultants are SO frustrating. I hope you don't have too much trouble there. It sounds like you have had a long journey already, I do hope you are getting plenty of support in RL (and we can offer it here as well of course!)

My symptoms had really got going this week despite the prednisolone - milder than in previous pg's but very much there. I feel ok this evening. Am metaphorically slapping myself in the face with a wet fish. Symptom tracking = madness, I know I know...

scarlet I am sorry your treatment plan let you down. That must be particularly frustrating and scary. Can I ask from when you started taking your progesterone? There is lots of different advice floating around but it seems the latest advice is that it needs to be taken asap,ideally from CD21. Even then prof Regan whoruns a specialist RMC clinic in London thinks it may be too little too late, but I think the latest research is more optimistic. Heparin can be useful too in assisting implantation.

I also suspect hormonal causes of my mcs and actually took herbal remedy agnus castus this time to boost progesterone. You may not be comfortable with this, especially if your cycle is already regular, but I asked my consultant who was happy for me to try it. I will never know if that is what made a difference.but I am 16 weeks now.

Finally, my consultant warned that there is a higher risk of mc due to implantation issues on clomid, though I know others would dispute this.

The bottom line with hormonal causes is there seems to be no magic bullet but at the same time chances of a successful pregnancy remain good if you can bear to keep trying. Once I understood this I found it easier to try again knowing I might fail but was doing all I could. It's very scary in the early weeks though so give yourself time to heal.

Welcome imscarlet. Sorry for your losses and hope you find comfort/ support and information from this thread.

You made reference to having a tilted cervix and wondered if you ever been told it's an issue? I'm interested as I have the same but always been told it's not a cause of rmcs. Although it does make smears and internal scans uncomfortable ??

Hi Scarlet you've had a hard time (hugs), I think you're in in the right place for help and support.

Just to echo what longest says about progesterone. I had cyclogest from day 21 in the form of cyclogest 400mg with this pregnancy. The other two I had it from day 16 as mexdroprogesterone and I think it was too early and too synthetic in it's form.

My consultant doesn't like femra at all and doesn't recommend clomid unless there is a proven pcos. I had femra with both my 1st pregnancies and have since read that there is higher risk of mc on it so may be worth you reading up on that.

My consultant recommended a supplement called 'inofolic' it's very popular in America with women who have hormone / endocrone issues. You can order it from pharmasure. It isn't cheap but I'm sure it has helped me. I plan to stay on it for a while yet!

Have you ever tried follicle tracking with your clinic through a natural cycle to as what happens? That's what they did with us this time and it helped to time the sex and put a lot of worries out of my mind!

Have you been tested for blood clotting issues at all? I also take 5mg folic acid and a mini aspirin every day, although the aspirin is controversial and many consultants would argue I shouldn't as there are no blood clotting issues known for me.

XxX

Hi scarlet sounds like you have managed to find good care in ireland, which I know from friends can be quite difficult. As others have said the standard of care can vary massively and it can be frustrating to get conflicting advice. I think the collective knowledge on here is probably one of the most authoritative and up to date sources of information around, so pull up a chair.

I am waiting with bated breath for the results of the combined test. Can I ask how others got these results and how long you had to wait? I didn't have the presence of mind to ask. Will the midwife or my gp call me? My midwife seems a bit batty tbh. Filled in all sorts wrong on the form for combined test. I realllllly don't want a prolonged wait.

belle mine took a week I think and came in the post, but they said I would get a call if there was any cause for concern and so I relaxed a tad after the first few days.

Morning all, hope everyone is well. bellende I have heard the same - results in about a week but they call if there is cause for concern. Fx for you. I always leave appointments wishing I had asked more questions.

Amazing news on everyone's scans.

Could I ask for some advice please? We had our recurrent miscarriage appointment on Wednesday. They took a whole load of blood, results in 8 weeks. They scanned me and apparently my cervix and ovaries are 'normal'. However she described my endometrium as 'thin'. When I questioned her as to whether this was an issue she assured me it wasn't, just depended on where I was in my cycle.

When I left I looked at my notes and it said lining was 6mm. This was day 21 of a 27 day ish cycle (post ovulation). I've been consulting doctor google (I know, I know) and everything I read online says that IS thin. Apparently if your re having IVF they won't transfer at less than 8mm. This could account for my light periods. I'm freaking out now that this is an issue but not sure where to turn because the consultant shut that line of enquiry down straight away. Anyone else had this?

Morning Monten, It's frustrating when you get told something isn't 'normal', but it's 'fine', and you're thinking, well, it can't really be 'fine', tell me how to fix it! I had exactly the same kind of thing with very thin lining and a few times got as far as booking investigations but got pg both times, so it can't have been that thin. It sounds like mine was about the same as yours, in the 6mm on day 23-24 or so. In fact, when I went to Coventry, they were actually quite worried that they wouldn't be able to get enough for a sample (but after 2 goes, they did get one). I've tried acupuncture, and I think it did help to improve my lining, and then I had the cyclogest from day 21-28 for 3 cycles after Coventry but was told to go back to only using it from BFP when it didn't work. The scratch you get at Coventry also helps improve lining for 3 months, too. It did really worry me, for a time when I was not conceiving for 10 months, but, clearly, I have managed to conceive now, so there is hope. I hope you get some answers to reassure you soon. x

Welcome, also, Scarlet, sorry for your losses, you've come to the right place for support and info.

Belle, fx 'no news is good news' on the blood results front. I'll be in the same boat next week. I was worried that I might have to wait longer due to the Christmas post, but hopefully I'll get the results and know what's what before the festive close down... Everything crossed for you!!!

Hi monten Thin lining has been mentioned on the thread a few times, and it's certainly one of the things they look at in Coventry. It makes sense that optimising lining would help implantation. AFAIK it's oestrogen that builds up the lining early in your cycle then progesterone that maintains it. It would be worth trying to get your hormone levels checked if that wasn't done as part of your blood tests. I recall someone having acupuncture to improve uterine blood flow and a positive effect on the lining, but can't remember who.

X posts. Morning, just !

Hi Monten, I had very thin lining, and I really believe it DOES make a difference, as Baking says it's all caught up with hormonal issues. I had acupuncture, took maca root, some omega complex and royal jelly, all which contributed to establishing a good lining. My lining went from 3mm to 7mm by the time I went to Coventry, and the scratch contributed to get it nice and ripe for implantation. A few months off also helped.

Thanks so much everyone. That's good advice re. Accupuncture and supplements, I will try all of those!

I've heard Coventry mentioned a lot, and understand they're a centre if excellence for recurrent miscarriage care. How do you get referred there? Or do you have to go private? I'm at Kings in London at the moment.

just can I ask whether you were prescribed cyclogest for the lining? And did you conceive 'despite' the thin lining or after it had improved?

I'm not quite sure where to turn next. If we don't conceive this cycle that will be over six cycles since the last mc and I'm 37 so I guess I go to my GP and ask them to start investigations.

Monten, it was despite the thin lining both times. I did take the cyclogest to support the lining but didn't conceive on those cycles. Actually the things that did the trick both times was booking investigations and, oddly, going to see Marcus Briggstocke in stand up. But I think the second one might have been a coincidence Good luck!

'Coventry' is the implantation clinic run at Coventry University Hospital by Prof Siobhan Quenby and Prof Jan Brosens. You go as a self-funded NHS patient and can self refer. It costs £360 for consultation, scan, uterine biopsy and scratch and a phone consultation to discuss results a month later. The biopsy is tested for decidualisation (how the lining prepares for implantation) and for NK cell levels. Most people go there having had all the NHS tests come back as normal, I'm sure if you live in that area there's a general RMC clinic there too. You need to be at least 2 cycles postMC, not pregnant and 7-10 days post ov.
The protocol is progesterone from CD21 of your cycle until CD28, continuing if you get a BFP. This is supposed to improve and maintain lining. Heparin injections from an early (5 week) scan confirming a pregnancy sac in the right place - this is to protect the developing placenta, not for preventing clotting. If NK cells are high you also take steroids from BFP.

Yes, Coventry has quite a few devotees!

They run an implantation clinic, which is self-funded NHS, meaning you pay, but it covers the cost, adds to their research data, and is nonprofit. It costs £360 as a flat one off fee.

They need you to be post-ov and 2 cycles after a MC for the tests, which involve the 'scratch' where they take a sample of uterine lining cells to check your nk cells (natural killer) levels. Higher levels can indicate a problem with local immune reactions, and they treat this with steroids from BFP. If you don't have high nk cells, they offer a protocol of progesterone from 7days post ov and heparin from successful scan if you get a BFP.

So far, just, tiny, Bootles, and I are all pg on protocol, and I think some others have been prescribed progesterone and heparin on the basis of Coventry protocol. Please feel free to correct me, anyone!

Profs Brosens and Quenby run the clinic, and have written some interesting articles if you google scholar them...

Sorry, I've read that back and it isn't very clear, but I know others are brilliant at explaining it!

Baking explained it so well (as always!) x

Marcus Brigstock would make me spontaneously implant

Me too

Thanks for the advice. Someone said earlier that this thread contains the most extensive collection of current miscarriage advice anywhere and they were absolutely right. You should ask mn to archive this.

So Coventry is an implantation clinic, not a recurrent miscarriage clinic? Both of my losses were chromosomal so unless there is a hereditary gene issues (which is being tested) it feels like my issue is now fertility and being able to get pregnant again. I might see what the new year brings and self refer - £360 sounds like a bargain to me. Especially after that private consultant wanted to me to pay £5000 for a hysterocopy .

Monten my hysteroscopy cost £3k at Nuffield, £5k sounds like far too much xxx

'Implantation issues' covers a range of outcomes, I think? It might present as unable to get a BFP or chemical pregnancies, right through to later first trimester losses. All my losses were 8-10 weeks, with HB present up until the time I miscarried. It was only when I was having weekly scans that we realised it was starting to go wrong at an early stage and the growth was faltering from the off.