Recurrent Miscarriage Support Thread 20 - tests, treatment, trying again.

[barkingtreefrog]

Buckle up, the threads move like lightening! Tea, sympathy, information, support and combined wisdom to guide you through the maze of testing and treatment for recurrent miscarriage. Newbies always most welcome.

Please start with the traditional recap of your stats.

Counting so sorry that it is happening again. I have had surgical and natural. With my MMC I just wanted it to end ASAP. It was quick, bleeding afterwards was minimal and I could get on with looking after my sons. However I wasn't aware at the time about the risks of adhesions though, and so personally I wouldn't opt for a surgical again, I would be too worried about the risk of more adhesions or Ashermans. But I'm one of life's worriers.

Tiny congratulations on the safe arrival of Alice, I hope you are allowed home soon to enjoy this new chapter in your lives.

Minnie my appointment appeared soon after I chased it. Still don't actually know if it's a RMC appointment or if it's just to go through my results from the pregnancy tissue testing.

Thanks freckle cat and girlie Good idea about the secretary. I'm up for a fight today. I'm so pissed off about it. I could have been seen by now!

counting I am so so so sorry, my heart literally hurts for you. I wish I could take some of the anger and disappointment for you. Life is a cruel and shit place sometimes. I hope you have lots of people there to take care of you. I hope tomorrow goes ok. Look after yourself. Huge hugs.

barking hope your meeting goes ok and you are feeling better?

Minnie I am not sure how long it’s been but it took 6 weeks for us to get our appointment and results after MC3. I think the results are sent to the consultants secretary so they should have them there and at least be able to tell you whether they have been received although they can’t tell you anything about them.

tiny Many many congratulations to your whole family. Hope you are feeling ok this morning with lovely little Alice .

Thanks bythesea it's been a month and heard nothing. I hope your right about the secretary having the results though. I'm worried if I'm not in the system theyll just lose them.

pop sorry they found the adhesions. Hopefully they'll get them sorted now. And crap on the baby bomb. Just happened here and I totally agree with two forward one back x

pop, sorry to hear you have some adhesions but glad they are sending you for some treatment. I always think it feels a bit good and bad when they find something, as on the one hand that might be what's causing it and when it's sorted it might be ok, but on the other hand how frustrating they didn't sort it out earlier.

I second contacting the sec of the consultant if you can get their number minnie. My appt was brought forward by a month by speaking nicely to her, although maybe the first port of call is the epu to make sure they've actually sent the referral in the first place . I would say they are highly unlikely to just lose the results (although never say never! ). I think they will be with the consultant too, although maybe your gp could access them? Don't know how joined up things are records wise.
How did you manage recovering from the procedure yesterday loopy? Hope you're feeling a bit better now

Morning all,
I am so moved by your thoughtful and kind words. And how you share my pain and want to take it away. It's so kind if you. I am reading and rereading your messages. And they are so moving because you know what this all is.

In truth, the pain has not yet arrived. I just have not processed this. Maybe tomorrow.

tiny look forward to updates on baby Alice. It's uplifting and won't hurt me because we're in this together. X

barking all the best with this meeting. X

counting I am so, so sorry to hear that, and send you many hugs. Can't imagine what you might be feeling, but know that we are all here for you. Thinking of you. I've had two surgical managements and have found them straightforward and much less physically painful than my natural mc, but with the last D&C, it did seem to make the wtf cycle very wtf, whereas after the natural mc things went back to normal quite quickly. I know other people have experienced it differently though. And I also relate to what you say about the pain not yet arriving, I think missed miscarriages can be like that. Shock protects us. One step at a time and as much gentleness as possible. xxx

tiny that is wonderful news, I hope you are nestled in and full of love.

minnie chase it up. My results came back and were sitting under a pile of paperwork for four weeks. Consultant's secretary is the way to go.

Minnie, I totally advocate getting the consultant's secretary's direct line and email and calling daily until it's sorted. The squeaky wheel gets the oil, and all that.

Counting, hugs to you. xxx

Barking, good luck in your hotel/meeting. Hope the cold has eased off.

Squeeky wheel gets the oil and all that...

Ffs! Spoke to the secretary who said she could see I was in the system but then passed me to bookings who said I was on the waiting list as non urgent. We were supposedly referred on 3/3 but the bookings place show I was referred on the 16/3. Secretary says she can't do anything. Bookings said I'll get an appointment in the next four weeks and that my gp could expedit it but I can't see them till next tues at least. I'm so so fucked off. So now it'll be two months not one since the mc- time I can't bloody afford to be wasting. I could cry!

And to top it off my period is mucking around. Spotting, starting stopping. Bloody wtf cycle!

That's totally crap minnie. How unbelievably frustrating. Why does the level of care vary so much? Grrrr. Hope your cycle sorts itself out soon and you get the appt organised. Could your epu get it expedited perhaps? Given that they have messed up in the first place maybe they would be able to put in a hurry up request

Oh Minnie that's crap. Hoping your GP can speed it along. Big hugs.

Counting I'm so upset for you xx

Loopy how are you feeling today? Hopefully GA has worn off now. Did Mr W say anything about your next AF or would you not have one if he's removed the lining?

Minnie that's such a crock of shit!! Why the hell was it marked as non-urgent? Ridiculous. I also wonder if you can go back to EPAU and ask if the appnt can be brought forward? I can never speak to anyone other than an answer phone with my local unit but if you can speak to a person it could be worth an ask.

How do so many of you know who your Consultants are? I wouldn't have the first clue who to try and talk to let alone their secretary.

Brummie I think it will be a very tiny light period. He definitely said I need to wait until after my next period and then can TTC that month, so even though he's taken lots away there must be some lining left unless he is expecting it to build up a little from now but not enough to support implantation? But as I thought I may ovulate this week, I guess my body should have done most of the building up of lining by now so am expecting it to be negligible bleeding when AF arrives.

Sebsmummy I was told by the epau nurse the name of the consultant that she was referring me to. I then phoned up the hospital and asked to speak to whoever was his secretary, and then have been emailing her ever since. Still not actually had a proper appointment with the consultant, as I got a BFP before he saw me, but as I'd got the blood test results they arranged a hospital prescription, and then when the next BFP also ended in a mc, the secretary booked me in for the hysteroscopy. I only met the consultant a short while before going into theatre!

minnie I managed to speak to the secretary at my GPs surgery, who was able to chase along the referral. Basically, I rang up the reception and explained what had happened, and they said the GP secretary was the person to speak to. I don't know if this is the case in every GPs, but it's worth a shot! When we hadn't heard I did a mixture of chasing via her, the consultant secretary and the EPU. I also wrote a letter of complaint to the consultant. I don't know what made the difference, but we did at least get an appointment eventually! For us, it was 6 weeks from the D&C that we had our bloods taken (at the EPU not with the consultant), then another 6 weeks until we saw the consultant to get the results. But every trust is different I think.

sun, not heard from you in a while. How are things going? Hope you're doing ok

Oh minnie that's rubbish. Interestingly in our area they don't see you until three months after as they don't take blood tests before then to ensure everything is back to normal. So much so that even though I'd seen someone privately who wanted to make sure it was 8 weeks after before they do blood tests, the nhs wanted to do them again to ensure it was within their 3 month guidelines. It's so strange how care is so different in different areas.

flower that's what I was told too. They didn't want to see me until at least six weeks after so all the pregnancy hormone was gone. Then bloods could be taken, partners blood will also be taken apparently for the genetic testing.

Just waiting to see acupuncturist right now. It's amazing how the weeks flash past!! In 4 weeks time I should be making my Coventry appointment, bonkers!!

counting/just/bythesea thanks, I've suprised myself at how well I've coped with sitting next to a massive bump since 9am! Just this afternoon, then all of tomorrow to go.... We've just had lunch and checked into our rooms - I've got an amazing room with a four poster bed and there are towelling dressing gowns!!!! DH and I tend to camp when we go away, this is another world to me!!!!

Minnie that is so shit. How is it non urgent?! And I hate that 'nothing I can do' line. Surely they move people up if there's a cancellation? Could she not at least say she'll put you on a list for that?! Grr. Why does this have to be such hard work?

counting we're here for you when it hits. It's natural for there to be a delay.

Thanks for all your replies. It is very weird how different parts of the country have such different rules. Did make me feel better that maybe we wouldn't be getting blood tests soon anyway.
Rang my gp and amazingly got a kind receptionist who listened and said she would write it all down and ask the doctor to see if he could do anything. Have to ring back on tues as its bank holiday. Very very frustrating as if I'd just chased it more last week we'd be further along now! Need to learn to not take people at their word- lesson learnt there! It's the waiting that's so frustrating.

barking hope the meeting goes ok. Hotel sounds fab!

loopy how are feeling today?

I have lots of EWCM today, no blood. Very weird and WTF. think I'm going to rope DP into a bit of lovin just incase

counting hope you are doing ok as can be, thinking of you lots

tiny also thinking about you and hope you are recovering well and little Alice is good?

loopy hope you've been trying to take it easy!

barking by the time you read this, you're half way through. Enjoy the room!

So 12 week scan for me tomorrow morning, think I will be 13 weeks exactly so we'll see. I am terrified. I never thought I would get to this scan point and now I am here, I am not sure I want to know what they have to say.

Bythesea, hand holding for tomorrow. xxx

counting I echo what barking said, we're all here for you when it hits. Also wish we could share the pain with you, it's so much for one person to go through. Hope everything goes ok tomorrow, you will be in my thoughts. xxx

minnie that is so shit, sorry you're having to battle this on top of everything else. Hope your gp can speed things up for you.

bythesea massive good luck for tomorrow! We'll all be there with you.

barking sorry I think I've missed what your meeting is..? Are you still testing on Monday? Will have my fingers crossed for you!

I went to see my gp mon who a) agreed to test thyroid to rule that out and more importantly b) said there shouldn't be a problem prescribing the coventry meds -yey!! - he even said to see him again once I'd got my coventry 'letter' (I'm assuming they give some sort of recommendation letter from what people have said, do you leave with that on the day?) to go through it! Yey!

So pleased it looks like I've avoided the battle of that one after having so many problems getting basic tests done.

Waves to everyone, sorry those I've missed. X