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TTC Super Ovulation part 3

(978 Posts)
Arianrhod Mon 08-Oct-12 08:30:07

Hey ladies -

There are a few of us who are ttc after mc's, however there will be ladies out there who are also ttc for the first time or second or third without success. If anyone is on, considering or had success on a super ovulation programme then do join us. How long did it take ? Did you try IUI with it.. ? Did you have PCOS?

Kicking this off and hoping some of you will join....

part 1 here:

Part 2 here:

duggs1976 Tue 12-Mar-13 21:49:57

Very interesting belly d - would u be able to post on the NK thread as I am sure there r some ladies on there banging away with dr s ( so to speak) that may have other issues too. Fingers crossed for you belly d x

buzzybee123 Tue 12-Mar-13 21:51:25

ari create do a fertility MOT that checks you blood flow to your all your lady bits and cost £150 I also think they do uterine scratching too

pebbles you have go where you feel happy and comfortable with

duggs1976 Tue 12-Mar-13 22:01:51

Info on the scratch

Mel3062 Wed 13-Mar-13 05:44:12

Umm yes very interesting I have ureaplasma so the fact it's linked to nk cells ummm. As for superovulation I'm not sure i must be on my 7th/ 8th now it's hard to think its been another year nearly since all this began, miscarried April saw mr S in may sad
Umm the fertility mot or scratch sounds another thing I could try but would they just let you have that or is it pre ivf with them?
Still got 2 tubs of dhea and Wobenzym under my bed untouched!!
Waves to all x

duggs1976 Wed 13-Mar-13 07:08:14

I've put a badly typed message on pred thread ... I can't help but be a bit angry at dr s approach when so many of us continue to struggle on his plan. The more I hear about other doctors protocols the more I wish I had never seen dr s at all. Oh well we will see all those with pred babies under him will think him a genius ( as would I if I had one too) but I think it verges on the irresponsible.

Arianrhod Wed 13-Mar-13 10:37:00

Weeeeellll ... I asked Cheryl for the photographs that were taken during my hysteroscopy which she kindly sent me, I then sent them on to Penny at Serum. She's replied back saying "I have to say it doesn't look like a perfect uterus" but as we're having another phone call tomorrow afternoon we'll discuss it then.

HOW much more can there be wrong with me?! sad

Arianrhod Wed 13-Mar-13 10:48:17

Oh heck, I missed the five posts on this page, sorry!

buzzy That's interesting info, thanks. But I presume you'd have to be going there to take advantage of that?

lol duggs I saw your message, it did come across that you were perhaps a teeny bit p*d off smile Thing is, for the majority of people (presumably those who don't have other issues, like infections) his approach works just fine. I've always maintained it would be far better to try to find out the cause of the high NK cells if possible, and treat that, rather than just treating the NK cells themselves, but I do appreciate in some cases that may not be possible. I was thinking about this this morning - I for one definitely have autoimmune issues, so that may well cause high NK cells. I know for a fact my psoriasis got way worse immediately following the birth of my daughter, and that's an autoimmune issue. So for me, it does stand to reason that my daughter's birth triggered a high NK cell reaction. However, I also have/had (whatever!) infections, which of course will also trigger high NK cell activity, according to Penny and others. So it's a bit of a double whammy for me personally, and treatment for one thing without the other presumably wouldn't work - both things need to be treated. Ditto with mine and OH's DQa issue - 50% of any good embryo we produce would be killed off anyway, so for us, that should also have been taken into account.

As with you duggs, much as I really like Mr S, I would like to have had a more comprehensive testing done right at the start. I do feel we have potentially wasted time (time that I, fertility-wise, didn't have) finding out more things that are wrong that we should have known right at the start of our private RMC investigations (I fully accept the NHS are useless for RMC testing). But you know, as OH says, we are where we are, and we have to deal with where we are right now, not where we wish we would have been a year and three-quarters ago when we were first seeing Mr S.

mel you don't need to be doing IVF to have an endo scratch done, you just have to be referred by a consultant. I wonder if Mr S would refer me - New Life do the endo scratch (and advertised the fact on Twitter recently) for £150 but you have to be referred.

However .. I shall wait to see what comments Penny makes on my poor beleagured uterus tomorrow, substandard as it apparently now is! Makes me wonder how I ever managed to have DD with so little fuss ... smile

buzzybee123 Wed 13-Mar-13 21:40:38

ari I hope you get things sorted out with Penny at Serum. I had the fertility MOT which showed good blood flow but low AFC. I then had my AHM done which was 1.1 hmm I am surprised that my fertility has dropped so quickly in 18 months hmm anyway this what made me decide to go for DE, I plan to have uterine scratching and AH too, might as well go the whole hog grin

Arianrhod Thu 14-Mar-13 15:32:14

Can I ask, for those doing/done/contemplating doing IVF, will you still follow Mr S's NK cells protocol, eg his dose of pred, intralipids, cyclogest, clexane etc? I know Serum prescribe pred and intralipids but from what I've read a much lesser dose of pred than does Mr S and I'm in something of a quandry over whether to accept their protocol for pred or that of Mr S, given that Mr S is an expert in NK cell treatment. I'm leaning heavily towards sticking with Mr S as I have v high NK cells (and I'm staying on the hydroxy), but I just wondered what others are doing/thinking of doing?

Mel3062 Thu 14-Mar-13 19:44:28

I'd have to follow dr s as I've high/v high and I'm sure it'd fail without it x

buzzybee123 Thu 14-Mar-13 19:47:09

ari I plan to use Mr S protocol, i'm also on the hydroxy but will also take the pred and cyclogest, I want to throw everything at this to make sure it has every chance of success

Breezyweezy Thu 14-Mar-13 20:55:18

Hi all, been awol the past few weeks. Apologies for the essay below!

brown very belated whispered congratulations. Hope all is going well for you. You are now my inspiration being a fellow pants AMHer!! I have my fingers and toes crossed for you.

Ari as I was catching up I was worried your OH might not have agreed to IVF but I am so happy to hear that he has agreed and it looks like you have already got the ball rolling with Serum. Fantastic news. When might you be going out to Greece?

Mel sorry to hear you need more humira. It is just one thing after another isn't it? Also sorry to hear of you BFN. Are you doing SO again this month?

Pebbles bugger about the tnf alpha but you are doing the right thing getting everything ticked off the list. Interesting to hear Mr S talk about Create being fluffy!! At the Lister today the consultant we saw looked at my HyCoSy results (done by Mr Gafar) and he was impressed and asked straight away why we weren't at New Life, and I said we probably would be if my AMH were better but for that the Lister are supposed to be the best. Have you had any further thoughts on where you might go?

Belly I'd be really interested to hear what the test was that you had at ZW. And ouch to the IVIG. So are you and buzzy doing anything diet/lifestyle-wise in preparation for your May cycles?

Duggs how are you getting on with things?

Went to my 2 IVF appointments today. First with Dr Thum at the Lister. He was absolutely fantastic, even my OH thought so which is quite an achievement for him to agree! He was very honest and upfront and told us all about chances with rubbish AMH with no mention on DE!! He is their immune specialist too and recommended more extensive immune testing before we go ahead with any IVF but he said the Lister could definitely help us to try to get our much longed for baby. I now have a long list of further tests to get done before we discuss protocol. He wants to redo my Thyroid function, chromosome karyotype for me and OH, Fragile X and Nkcell assay retesting CD69 & Cytotoxicity (where they test the nk cells with a bit of “pregnancy” from somewhere then leave it and see how much gets killed off). If it's more than 20% then they drop in meds like IVIG, Intralipids and steroids to see which one, if any has an effect on the nk cells, so if we were to get pg then they have the best idea of how to treat. OH has to have sperm DNA fragmentation and aneuplody testing which I was worried he would refuse as he is precious about producing samples (only at home!) yet even after explanation that he needs to go to the clinic to “produce” he says he is happy to!! So all this is going to cost us a small fortune before we even get to IVF but I suppose it is better to know what they need to treat first before we get started. He also discussed having another Hysteroscopy (£££!) as my last was for my septum resection in 2011, but once he saw I had had a recent HyCoSy he said not needed and just to have an endometrial scratch before any IVF, so they obviously do it at the Lister too, but it isn't on my pricelist!
We then went to Create, but to be honest after the high from the Lister it was a bit of a comedown! The guy we saw was very nice but they don't really believe in NK cells so their standard protocol is to give 25mg of Pred, Clexane and cycolgest and that's it. He recommended mild cycle IVF taking few drugs from day 5/6 with an aim of getting 1-2 eggs, I suppose like SO but rather than triggering and going “au naturel” they whip them out and pop them in a dish with the little swimmers!
So decision made, it's Lister for us so will be getting the testing done next week then appointment at the end of April for the follow up and next steps. Exciting yet frightening (thinking of the £££s) at the same time.

Waves to all!

Mel3062 Fri 15-Mar-13 06:35:38

Wow breezy yes exciting times very pleased for you! Very interesting hearing your experience.
Yes S O again for me though not til next month when completed humira again sad

Mel3062 Fri 15-Mar-13 06:45:18

Though still waiting for af to arrive so maybe a 32 day cycle this month but I did opks, as long as its not 50 days again :/

duggs1976 Fri 15-Mar-13 07:44:17

Wow breezy fabulous and I must say lister sounds like dr Gorgy - they go into much more depth than dr s so us long timers this seems v useful. I wish choccy could read your post as I am sure she would be interested.
I'm waiting for my next app 28 march as I have ivf round at hammersmith ( my free nhs go) will be may i reckon if I get the go ahead. It will be over a yr since last private round CGH testing.

If that fails then we have scraped enough together via loans saving etc to try a final round at ARGC. If that fails then the adoption that is on hold can kick off again so the aim is to be moving forward with our attempt to start a family by September -4 yrs later after starting to ttc. It could be worse.
Feeling quite positive even after chemical pg in jan.

Pebbles how r u? These reports on clinics r fascinating ladies.
Brown how u doing ?

duggs1976 Fri 15-Mar-13 07:45:45

Ari I have dr s ivf protocol here let me pm it to you or do u have it?

Arianrhod Fri 15-Mar-13 10:25:09

breezy That sounds fantastic, you can see why the Lister is so highly thought-of. What a great thorough treatment they're planning ... I know what you mean about ouch£££ but as you say, at least you're getting all bases covered. I do think that sperm DNA fragmentation and aneuploidy tests should be standard for all RMC testing, it's so fundamental to a healthy pregnancy that the sperm can do their stuff. Why isn't this routine? Why always assume that the problems are with the female, that can't always be the case? If the new NK cell testing comes out that you need IVIG, will you do that? That's major £££ sad Really interested to hear how you got on, like duggs says, fascinating to read how the different clinics approach things.

pebbles You there? What's happening for you? And brown, how are you doing?

duggs Yes please, I'd love to have Mr S's IVF protocol, I don't have it and I was wondering this morning whether I could be cheeky enough to email and say that we're planning to do IVF and could they tell me what their protocol is. You'd save me a large amount of embarrassment if you wouldn't mind PMing it to me smile

OH did actually ask once we've done the deed with Serum, who would then support me through the pregnancy? (bless him and his blithe assumption it will just work first time! He never learns ... ). I assumed I could stay under the care of Mr S (££ kerching!) but I guess I should find out. I'll do that once I've been out to Serum, we're flying out overnight 17th/early 18th April for OH to have his 'sample' frozen and me to .. well, either have the aquascan or the hysto, OH said we need to 'discuss it' to decide what we want to do.

duggs Can I ask why you're doing your next round at the Hammersmith, not the LWC? Just curious why you swapped clinics, if you don't mind me being nosy smile

I'll PM choccy and suggest she might like to read the thread smile

AFM, well on talking with Penny at Serum again yesterday, she said looking at the photos of the Mr S hysto she could see red streaks which were indicative of continuing infection. Bear in mind I had the hysto done about 2 weeks after we'd finished the 25-day course of anti-bs! She did say again that in women these infections rarely ever clear, hence why during their IVF treatment if you have or have had any of these infections you have to take a further course of anti-bs. But she said where there is or has been infection(s) there will be scarring that most doctors don't find or think relevant, and that while she wouldn't tell us either way what we have to do, our best chance for good implantation would be to have the hysto. I asked about having just the endo scratch done; she said that the endo scratch only does very light scratching and that the beneficial effects only last about a month, whereas during their hysto they do much deeper implantation cuts which last up to about 6 months. She said it just wasn't worth me doing the endo scratch - but of course that it was entirely up to me.

Anyone else wince at the thought of 'deep implantation cuts'?? shock

Arianrhod Fri 15-Mar-13 13:57:55

Completely irrelevant to any other topic we've been discussing, but I just read this really interesting article on progesterone and thought it might be of interest:

Arianrhod Fri 15-Mar-13 14:01:52

Oooh, that's interesting, out of interest I just had a look at Mr S's web page which lists his treatment programmes and I see it's been changed, it now includes IVF/ICSI . It didn't used to - I wonder if that's because of Mr Gafar now working there? I know Mr S said he was convinced to add in the TNF-a testing because of Mr Gafar.

Very interesting!

Arianrhod Fri 15-Mar-13 14:15:26

Thanks duggs, I got the IVF treatment programme off the website. Much the same as we do now, only with added clexane/heparin.

ChoccyPud Fri 15-Mar-13 18:48:56

Hi ladies, Ari was right, very interesting. Sorry this is a bit of an essay, would be interested in your views...

Mr Gafar did some scratching while he was in there doing my hysteroscopy, which he said would last about three months. No pain afterwards so I wouldn't panic about discomfort. I guess it's like ploughing a furrow! I've got no scarring and he was happy with how things look in there, giving us the all clear to crack on ttc-ing.

From what I gather, scratching (to whatever depth/extent) is growing in popularity. It started with a study in Liverpool or Manchester I think. It made sense to me to have it as it is supposed to help with implantation but also causes lots of the "good" cytokines to be released which for me is useful as it should help rebalance the good ones against the bad cytokines. Having too many of the bad ones is what gives you a high TNF alpha level, as I've got. Mel and anyone on humira because of high TNF alpha might want to have a look at it.

Mr G wasn't convinced IVF would help me... He agreed with Mr S that as I get pg, with a bit of luck, one will work out sometime. The one I had tested after ERPC was genetically fine, and he said it would be very unlikely that the one out of 7 pg's that was tested was ok but all others weren't, so lets assume there's no genetic issue. So, in my view its worth another go naturally, with the usual Hydroxy and Pred and a million supplements (Ari H&B have only got 50mg resveratrol ATM, I'm chugging 10 a night!!).

Btw, in case any of you weren't aware, don't take Hydroxy within two hours of any indigestion meds, ie Omeprazole. I take Pred first thing with Omeprazole and Hydroxy in the evenings. Not ideal when you're pg and having awful indigestion but hey...!

If we fail this time we shall need a massive rethink... I'm not sure how many more pg's my body should be made to go through, never mind the emotional battering I've had over the last 3.5 years. I think We'll look at surrogacy rather than IVF... Why pay big bucks for the "front end" of the process when it's what I do to the embryo once it's in there that's the problem?! Better find a nice hospitable uterus. Lets see what happens if/when I next get knocked up. smile

LittleBairn Fri 15-Mar-13 19:06:41

Room for another?
My TTC story is that DH and I have been desperate to start a family for years but only just in the position to TTC last year. I conceived after 3 months of TTC, we were delighted only to be devastated when we lost our DS at 16 week gestation to premature membranes rupture.
That was early December and this is our 3rd month of trying, I'm starting to really worry.

I show a lot of signs of PCOS (I'm have seriously hirsutism) bu haven't so far presued a diagnosis, mainly because I got pregnant quick than I though I would.
I'm using the Clearblue fertility monitor its confirmed my suspicion that I have a short luteal phase of around 8/9 days.

I was seriously considered giving up permantly (I'm in late 20s but DH is mid 40s) but DH is now really broody and excited about the idea of having another baby.

Googling like mad for solutions but there is so many theories I don't know what the hell to do.
The monitor tells me I have high fertility at the moment so we will be DTD tonight amd then wait till we get the sign for ovulation and do it then too.
I've bought some evening primrose oil but too late for that this month.

I've also got a pinapple to eat after ovulation, I did that the month I conceived DS.

LittleBairn Fri 15-Mar-13 19:09:40

I'm also a nanny so surrounded by wonderful children all day. Thankfully my lot are now to old for the toddler groups so can avoid too much baby contact. sad

Pebbles73 Mon 18-Mar-13 13:38:53

Wow has been lots of posts since I was last on here so apologies but won't have time to comment on them all. Sorry been AWOL just a very busy week for me last week.

Lots of I testing info, sounds like things are moving along nicely for you Ari. Have you decided what you will do about the hysto?

I am more than likely going to do ivf at Newlife so will obviously follow Mr s protocol. I also followed it when I had frozen ivf back in about May last year when I had a chemical.
Currently just trying to get the money together for treatment and then can order the humira hopefully next week.
Found the endo scratching really interesting and read an article in the Times about how it can double your chances so defo going to ask Mr S about having that done too.

Breezy the Lister sounds great so glad you have found somewhere you feel happy with. Sounds like you will be busy with lots of testing!

Duggs seems we have relatively similar plans, we are doing two more rounds of ivf and then will have to call it a day and look into adoption.

Littlebairn sorry to hear you have had a hard time, miscarriage is so devastating and we all understand what you are going through. We're they able to offer any reason for it?
I have mild pcos and the specialist I (and most of us on here) am seeing privately had put me on Metformin as it can help to improve your egg quality. Might be worth asking your doctor about?

LittleBairn Mon 18-Mar-13 16:29:22

pebbles thanks I've booked an appointment with Dr.
I didn't realise until after I posted this was a specialist thread for the method, I will look into it mire if I have any further trouble. Thank you and good luck.

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