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TTC/Pregnancy on Prednisolone or similar part 4

993 replies

digitalgirl · 19/12/2011 11:28

A positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

Part 3 here

Part 2 here

Part 1 here

OP posts:
batteryhen · 24/01/2012 21:32

free I went shopping today and nearly wept with how much weight I am putting on. I saw my accupuncturist tonight who reassured me that as long as baby is ok, then the rest can be sorted later. She also said I had a nice 'shell' :) Which apparantly means I look healthy. Just fat. (she didn't say that bit - I inserted it in my own insane mind)

freelancegirl · 24/01/2012 21:24

That was it Battery, MummyAbroad. It's funny I remember reading her posts when she was going through checks and I can't believe she had her baby so quickly! Back to what we were saying about other people's pregnancies flying by.

freelancegirl · 24/01/2012 21:23

Kittens that is utterly shit. How bloody frustrating for you. I have read about Asherman?s before, I remember there was someone on the Recurrent Buns thread who discovered she had had it and had some treatment. I am pretty sure she has now had a baby. But it?s the last thing you need to add to your concerns. I would second what Duggs has said about trying to pursue the NHS route if possible.

Mercator welcome to the thread! And congratulations on the BFP. We are allowed to say and accept congratulations here I think as we all identify with the worry that we might not stay pregnant so we are not saying hey congratulations ? you?re going to have a baby! As people might be saying in the real world. But we are saying congratulations you are probably going to have a baby but we know you are going to go through a lot of worry, drugs and scans along the way there. Stick around, we will add you to the list.

Pico ? you have really never used a tampon? I have used them less this year than any time (all that miscarrying) but they are so useful! I think I?ve used them since I was about 13! Swimming, dancing, running about.. you can be so much more confident. I think am also going to try a mooncup at some point too, for various reasons, but towels are a PITA. It was also you who couldn?t face the dildo-cam (for want of a better word?) wasn?t it? Just try to relax with the Cyclogest. Remember, brutally, a penis and a baby are a lot larger than the pessary and our bits are designed to expand. I wouldn?t imagine you would need a lubricant for the cyclogest. If they get slightly warm they can be harder to put in as they are less stiff, IYKWIM. Just push it on the end of your finger ? like with tampons it will slot into a space further up and you won?t feel it at all. If you feel around with your finger you will find there is a space there! My advice though would definitely do it last thing at night so it has over night to dissolve rather than you having to have a lie down in the middle of the evening.

My MN name is pretty self explanatory really when you know my lifestyle! I find the nickname Free actually feels like it suits me (I mean suits who I am) though too.

Hello to all. I am coming back to London tomorrow and hope to stop off at Oxford St to see if a certain shop or two (Duggs!) have any nice maternity things. I can really ill-afford to buy clothes but I am running out of things to wear so at least need a couple of bits.

batteryhen · 24/01/2012 21:20

kittens That is crap. I am really angry for you. I was referred by my gp for a hysteroscopy last year on the nhs, and he was fab. It makes me crazy how it is very much a lottery of which gp you get. Did the Dr say how much scarring there is? Whilst I was waiting for my hysteroscopy last year I emailed Dr Lower (ashermans specialist) and asked for his advice. He will look at scan reports for you etc too. You may have heard of a mn lady called mummy abroad. She was treated by Dr Lower and now has a lovely little boy. He is the expert in his field and I would really want him if possible. Have you looked at the ashermans society? I joined them last year for info and they were great. I hope you get things sorted xx

Waves to all xx

snoopygirl · 24/01/2012 20:54

OMG the stories on here are unbelievable. RE: the miscarriage charter, I feel like making up a banner and marching throught the streets!!! It's disgusting the way you kittens and pico's friend and others are treated. Like someone said yesterday it would cost them less to just friggin investigate m/c rather than offer ivf on nhs which costs thousands.

Emailed L back at NLC and said can I just carry on with pred this month and not super ov. No reply yet. Others have been allowed with not much different hcg count from mine. Like you said digi I was only preg for couple of days. I can understand maybe not undertaking S ov this month cos of critical timings etc and af being out a bit but it's not like i was 8 weeks or something. digi can you actually get put though to Dr S?? Or would cheryl just refer you to L again?

I was happy before this investigation and I spose just buried it all away , able to deal with it and get on with my life. Now it's all consuming and feel like on a rollercoater and can't get off. alot of you are stronger than me (and I consider myself pretty tough). Dont really know how long i can do this.

Welcome merc well done ssshhhh.

Coley you are going great guns!

Coconutfeet · 24/01/2012 20:51

Bloody Hell Kittens. I bet furious doesn't even come close. I feel mad on your behalf. Angry

Welcome to Mercator. Excellent news too!

Sorry not to name check anyone else but I'm crawling off to bed in a mo. Hope everyone's OK.

picolina123 · 24/01/2012 20:15

havingkittens, some gps are crap. a friend of mine at wrk has had 6 miscarriages over 5 years and never been pregnant, shes 40 this year and he didn want to refer her to the miscarriage clinic, told her nothing is wrong , just keep trying . she insisted but hes taking his time , i told her to call and follow up and he only just didn it even though she saw him over a mth ago

picolina123 · 24/01/2012 20:09

forgot to ask how you are feeling ? have you gone for your trip ? i told my hubby if everything doesnt go according to plan im booking a trip home to sydney oz when im made redundant in april, i need a break and need to see my family.

Havingkittens · 24/01/2012 20:08

The reason I wouldn't get the hysteroscopy on the NHS is because my GP wouldn't believe me when I told him I thought I had scarring so I ended up having to get investigated privately. I could go back to my GP now and ask him to refer me but god knows how long that would take and being 42 with an AMH level low enough to cause me some concern already I wouldn't like to be wasting too much more time. I am going to write a very grumpy letter to my GP but I don't know if he'd be able to get me an appointment any sooner than if he'd made a normal referral now.

picolina123 · 24/01/2012 20:07

hi free,
i am with the miscarriage clinic at st heliers, not private so i have not met mr s yet and to be honest i think ive been all forgotten about, i tried to call and find out more but no ans and left messages that got no response. i gave up, saw my gp yesterday to say to wait till the week 8 scan and then i have to contact some one if all ok as when i spoke to tell them im pregnant they said they would start lowering my dose around then and i dont want to do anything without confirmation.
that for advice regarding cyclogest, im pretty backward - never used a tampon in my life so i think im doing this right, it went in a bit better today, still not the same as before. can i use a lubercant? and im in bed now waiting for it to dissolve, what my life involves now : )

duggs1976 · 24/01/2012 19:58

kittens are you with st marys? I don't understand why you wouldn't get an hysteroscopy on the nhs where they could fix the scarring? Why should u have to pay?

Stogan · 24/01/2012 19:40

Welcome mercator and sending all possible positive thoughts your way x

Havingkittens · 24/01/2012 18:50

Welcome back and quiet "yay!" on the BFP to mercator.

I've always wondered the same ari, about where people's names came from. I carried mine over from Babycentre where I was posting during my second, or maybe third pregnancy I think. It basically summed up my scared and panicky frame of mind. I was on some other forums to do with vintage interests and my nickname was also to do with kittens so on all of the forums I have been on, I have ended up being called kittens. My OH also calls me kittens.

snoopy, that's strange that you have to have a month off. Imagine if you hadn't taken a test as early as you had, you'd have been none the wiser and continued as normal.

Sadly, I am another one who scrolls back, reads all the posts and then by the time it comes to post I can't remember what's happened with whom! Can you all slow down a bit please?!

free, in answer to your question about what aspect of RMC having foam squirted into your womb covers, it is to see if there is any damage caused by repeat ERPCs etc that is making is so hard to get pregnant.

Well, my day has been f*ing marvellous I must say! As I suspected, I have scarring in my womb from all the bloody ERPCs, the consultant who scanned me said he thought it was most likely from my second termination after which they left me a souvenir which had to be removed by a subsequent ERPC. I am so cross! I went to my GP about back on 1 August with tales of mid cycle cramping and light periods after 7 separate uterine interventions of one sort or another, with alarm bells ringing that Asherman's could the the cause. The GP I saw was not my usual one as he was on holiday. He sent me for Day 21 blood tests and gave me some fob off that he would refer me to UCH but that they may not give me an appointment, implying that I'd used up all my NHS budget allowance with all the RMC testing I'd had there. It was a bit fat lie anyway because he didn't even refer me and there is nothing in my doctors notes about it at all. I went back to my usual GP, who is usually more than helpful (although I can't help thinking this has changed since GPs took charge of their own PCT budgets), to talk to him about the results of my Day 21 blood tests. Whilst I was there I asked him about the Asherman's thing and he dismissed me out of hand and pretty much made me feel like I was being a hypochondriac. He told me there was no indication of Asherman's and that there was very little chance I had it. Incidentally, he also told me that my test results indicated I was ovulating normally, which Mr Shehata pretty much said the opposite to. If they hadn't have dismissed my suspicions I could've been diagnosed and treated for this by now. As I don't have much time given my age it would be advisable to get it done ASAP, especially as I think you probably need some healing time before TTC. So, I need to have another scan at £150 and then £1300 for a hysteroscopy (after the £450 scan I just had). And that's before any of the other TTC costs, probable Superovulation as I've also just found out my AMH test results are 10.54, which is in the middle of the "low fertility" range.

So, I started on the thread for traumatised people who have had to terminate due to abnormalities, then the "recurrent buns" repeat miscarriers thread, now the pred thread (thanks to my GP I have been feeling like shit on steroids for 9 months for no bloody reason!), moving swiftly onto the Asherman's support thread, eventually to the Superovulation thread, probably the infertility board and one day to a "when do you decide enough is enough" thread. Grumpy doesn't really cover it!

When you have an ERPC, and you sign the waiver bit that says you understand the possible, but (apparently) unlikely risks involved in the procedure, what they fail to mention is that if you are affected they will wash their hands of you and refuse to acknowledge your suspicions should there be any repercussions and you will be forced to go and mop up their mess with wads and wads of £50 notes Angry.

ColeyOz · 24/01/2012 17:14

Hi Mercator - I did exactly what you did with the pred! I stopped around 11dpo and didn't test for about another week when I got a strong BFP. I really had no idea. Apparently the pred stays in your system so is still working from when you previously took it. I am now 10 weeks and everything looks good (fingers crossed)! You are doing everything you can now and good luck:) Keep us updated how you are going.

Arianrhod · 24/01/2012 15:57

PS merc feel free to add yourself to the ever-expanding and somehow strangely comforting List, if you like?

Arianrhod · 24/01/2012 15:57

Welcome mercator, sorry for your losses but you're in with a good crowd here. Whispered congr....... to you for your BFP, and there are others who did the same as you I believe, stopped the pred only to find out a few days later that they were indeed pregnant and restarted the pred, with no ill effect. Feel free to mental here, we all know exactly what you're feeling as we've all been there in one way or another!

Incidentally maybe I'm just too curious, but I'd be interested to hear the stories behind everyone's nicknames ... mercator is an interesting one?? Maybe I'm just a nosy git, I dunno :)

mercator · 24/01/2012 15:51

Hi Ladies - I wonder if I may join you all. You also gave me some fab advice re: taking the Prednisolone on the off chance we had got lucky last month.

Well your advice was well heeded as I did in fact get a BFP. But rather nervously announcing it on here - but seems we're all in the same boat so to speak. Wink

Bit of background as intro: I had one mc back in Oct '07 and then carried to term my 3 year old. Decided to try for no. 2 and had 3 mc's last year all at 7-9 weeks. Neg on GP test results and lost faith in the GP's so decided self refer to Mr S who I think most of you are seeing and got tested - v high NKC with 1.98 activation. So on very high plan. However, didn't think I was pg so stopped the 25mg after 9 days and then missed period re-tested and postive - eek. Immediately upped to 40mg. Had first intralipid last week and due for scan at 6+5 next week. Petrified as this was when the last one died although did not realise this until started mc at 8 weeks but required an ERPC.

Sorry for long post!

digitalgirl · 24/01/2012 14:16

I was hoping to make it this Saturday but just had a family thing moved to that day so will have to duck out. I wanted to bequeath some PG tests to the TTC'ers...so maybe will post them to PQ.

OP posts:
digitalgirl · 24/01/2012 14:15

Oh cherry and snoopy how frustrating for you both Sad.

Snoopy It does seem surprising that you've been given conflicting advice to sue. I remember Louise telling me to wait two cycles after my last miscarriage (at 8 weeks). I only waited one because my cycles were so long that it was 2 months anyway before my first AF came along. Mr S didn't seem to have a problem with me just waiting one, but did say it was advisable to wait at least one, especially after having an ERPC. Could it be worth double checking with Mr S if you're ok to TTC if you only tested positive for a day and your HCG never rose above 10?

buster wow, a neo-natal nurse! Do you work in a SCBU or on a post-natal ward? Sorry it looks like you're ovulating late again. But hopefully you can keep going with the OPKS and get the timing right so you're in with a better chance this month.

kittens good luck with the foam injection. Hope you get your results straightaway.

battery I'm a lazy cow and have stopped taking supplements. Bit concerned that my VitD intake is so low what with the weather being shite and me rarely going outside for the past two months. But hopefully can replenish stocks with lots of walks in the park this spring.

Oo, suddenly got excited about having a meet up with some of the pred thread babies this summer!

OP posts:
ChoccyPud · 24/01/2012 14:01

Talking of stuff going on... Who else is coming for lunch on Saturday?? Somewhere on Southbank near Waterloo. PM PQ if you can make it so she can book somewhere.

:)

Pebbles73 · 24/01/2012 13:38

Snoopy totally understand your frustration as currently in a similar position. Had a mc end of October which dragged on for 2mths and then got my first af last weekend. I have also been advised to wait and I know Louise is right but it is extremly frustrating when you are just desperate to get going again.

Really made me laugh Kittens about the handling fee! Grin

cherrycheeks · 24/01/2012 13:04

I can't keep up- so much going on!
snoopy sorry about the chemical being confirmed :( I would personally listen to the advice and wait a month. I think NLC treat everyone individually so treatment/advice varies. Even though it seems that you are are in a similar position to Sue was last month, it doesn't necessarily mean that the advice given would be exactly the same. Doesn't really make sense to me either, but we may as well follow the advice given however frustrating it is!

Good luck kittens with the tests. LOL at the handling fee!!!

Waves at everyone else, good luck with testing/ swi/ scans/ this week. Sorry not to name check everyone but I've only got 10 mins before I have to dash out, keep scrolling back and then forgetting!!

Had my follicle scan yesterday which showed 2 cysts on my ovaries:( means I'm out for his month. Have to go back next cycle day 3-5, hopefully to find out that they have gone! Glad to have a month off the pred but, tick tock, pretty gutted to have no chance of a BFP once AGAIN!

freelancegirl · 24/01/2012 12:47

I understand your frustration too Snoopy. I had to wait two cycles after the miscarriage on treatment, although I had been 8 weeks by the time of the ERPC. Have they says why you should wait after a chemical? Ari could be right, frustrating though it is there might be a good reason for it. We can all relate to that feeling if running out of time but in the scheme of things an extra 4 weeks might not really matter on the long run. Although we sby going to are all getting older I think we can be hopeful that from one month to the next our eggs are in pretty similar condition and when you do have a baby four weeks will probably not make much difference. I know that horrible feeling of having been set back though, so I do emphasise.

snoopygirl · 24/01/2012 12:34

yes it was her ari. I dont' know what to do now.

Arianrhod · 24/01/2012 12:28

Was that Louise, snoopy? Mr S also advised me to wait one month after my early MC, which I wanted to do anyway to have one proper AF before trying again. I absolutely understand your feeling you are running out of time, but even with being an oldie (44 now :) ) I didn't want to run the risk of running straight back into another miscarriage. Do understand your frustration though!