# Picking you brains and experience



## ♥JJ1♥ (Feb 11, 2006)

Hi Ladies

Once again I  am picking your brians and asking for advice/suggestions.  As many of you know my TTC journey has had several hurdles but I haven't given up yet, and like some of you prove you do get there in the end.

I had 4 cycles of OE then switched to DE's, my lining - or lack of a lining is my major problem, then age/poor responder and NK cells. I moved to DE as it was suggested that a more robust embryo from a younger donor might succeed in a less than hospitalable womb lining like mine with a lining of barely 5 mm, but alas not in mine! 2 yrs ago Dr Sher and Mr Taranissi said surrogacy was my only option, either own eggs or with DE's.  Now 2 yrs on and 42, the eggs are even older and I only produced 4 and 5 then!! 

My donor's partner also told me that his sister has agreed to be a surrogate - she is a lovely lady, 34 with 3 children of her own, her youngestr is about 18 months old now, she has had one mc before her DD,  she is based in Ireland. He'd discussed the implications for her and her partner and had even found a satelite clinic in her home town for gynae tests when/if needed.  I can't believe the generoisty of her and how my donor's partner had been having discussions with her for a few weeks. I only found this out on the morning, but like he said she may not be suitable etc but she is prepared to be considered for my own eggs only.

So I went to the Lister and CRGH (UCH) on Fri with my donor's partner for support. First stop the Lister and we saw the lovely Dr Jaya Parikh- such a lovely, compassionate and understanding lady. I considered the Lister as I enquired as to which clinics do CGH, but in fact she said that I was not a good candidate for CGH as you need a stack of eggs/embryos, but also the Lister don't do surrogacy they could do EC and then transfer them elsewhere.  In fact she suggested that I return to Mr T as he is as good as anyone in the field, knows me and is licensed for surrogacy. She also could understand where I am coming from with looking back on my old eggs, she also said maybe cycling with lower doses, she didn't recommend cycle after cycle and freezing. She suggested an AMH although she said she knows Mr T doesn't do them, but I thought why not just do it and see, and as I was on day 2 I did the usual bloods whilst there, as my donor's partner was going to run them through for me later that day as I haven't had an fsh done for 2 yrs- in fact my donor took my bloods for me in their clinic room, as I am a needlephobe and do trust him implicitly. Results back Wed  there's some life left in the old eggs.

She also said that if I wanted DE's they could help me, but the lining being the big worry and there is a wait of about 2 yrs - I said that DE's I could revert to later in 1-2 years to come but every month my own are getting older, if this is my way.

Then we went to CRGH (UCH) and saw a male Dr there, he was very different in approach, professional and  knowledgeable, he wanted to do bloods but I said that I had just had them done and could give him the results next week (didn't day where).  He wanted to do a scan, to look at antrical follicles after looking at my hysterocopy DVD stills etc he then scanned me and then said he didn't find what he thought he would see - so what is knew   - he could see the horns in the uterus but one looked occluded and there was a septum or growth which wasn't present on stills, but he said I don't have a bicornuate uterus so he was puzzled.  He suggested doing 4-6 IVF natural cycles back to back harvesting the eggs, maybe doing CGH and then surrogacy but he would have to discuss my case at the grand round as they/I would have to consider the financial implications and the emotional impact of 6 cycles back to back- he said that surrogacy would have a success rate at best of 10%. He suggested natural IVF cycle so no drugs and getting one egg, as the drugs can also damage eggs and by bombarding them with 600 of Puregon to get one or 2 more might not be worth while - just a monitored ie bloods and scans and EC every month.I haven't contacted ARGC to see what they would suggest.

What do you lovely ladies think?? has anyone done anything similar or natural IVF cycles back to back.  
L xx

PS sorry for the long ramble!


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## greatgazza (May 27, 2010)

Hi JJ

sorry to hear you're in turmoil too, i know the feeling  .  I don't claim to have brains or experience   but thought i would give a couple of thoughts.  I have recently been reading about Peny at serum and when she sends people for hysteroscopies they often remove/fix septums/polyps there and then (i don't actually know what a septum is...?) but they also scratch the lining to allow the fresher more venous/healthy lining to be available (a bit like exfoliating maybe??!!) to aid implantation.  Lots of women on the thread i was reading raved about her and said that whatever they did in the hysto 'fixed' their issue and that Peny finds things that other doctors either don't look for or deem important.....  Another test that Peny does is for chlamydia which even if women have tested negative here, their test shows up positve and many women who then had their antibiotics and subsequently tested negative for the hidden 'C' got a BFP.  It's a bit controversial but women who've had tx there really do say amazing things about the clinic and Peny.


Another thing i have been recently thinking about due to my age and possible egg quality, like you, is natural/mild ivf which they do at Create.  I did like the idea of less drugs, due to the general havoc they play but also if they are potentially damaging what little i have left then i was concerned about it.  Lulumead did 'mild' ivf with them and liked their 'less drugs' philosophy.  

You may already know all this as it sounds like you are talking to all the experts and i haven't even had one consultation so please ignore me if i'm teaching my grandmother (no offence, we're the same age!!) to suck eggs....

GG x


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## greatgazza (May 27, 2010)

P.S

How amazing of your donor's partners sister to offer that. i always feel very emotional when i hear about the selflessness and generosity of some people.  I find it hard to imagine someone would go through that for someone else, especially as you're not related or anything.  wow.

GG x


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## ♥JJ1♥ (Feb 11, 2006)

Thanks for your thoughts GG much appreciated - I have heard of Penny's Serum miracles, with hysteroscopies, but I really want to be treated in the UK as I went abroad and basically was sent home from Barcelona 4 times after just a scan, it ended up costing me >£15K and I never even got to ET, so logistically I wanted the UK.
I have had the UK chlamydia test but not her hidden C test - with the menstral blood- and to be honest with my lack of lining I probably couldn't even get enough to test!
I suppose if I end up down a surrogacy route then it doesn't really matter what sort of mess my lining is in if it isn't being used.

I am also amazed at the generosity of people's willingness to help.

L x


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## Bethany915 (Aug 1, 2010)

Hi JJ

You may well have done all this - so ignore me if so - but from what you say, it sounds like the lining is the main problem - have you checked out Zita West on anything to improve lining, also I heard that low iron levels could have an adverse effect - you're not anaemic, are you?  What is the hormone responsible for building the lining?  Can they not give you a supplement of "lining-building hormone"?  I guess what I'm saying is: can you / your consultant focus on improving the lining first, then you could return to DEs once the lining is "fixed" (or your OEs if you wanted to give them another go).

It's great of your donor's partner's sister to offer surrogacy - but surely in this day and age of so many fertility treatment options, there must be something that can be done for a poor lining before you go down the surrogacy route?  Or maybe you've tried all this to no avail, with no other suggestions left?

6 IVF cycles back to back sounds like a lot of emotional investment to me, even if natural cycle.  Reasonable if you have a lot of money available and an extremely flexible job - but otherwise very stressful, I would imagine.

Out of interest, are your donor and his partner in the medical profession?  Sounds like they are actually taking the blood and running the tests themselves, from what you say?!

Good luck with your deliberations   

B xx


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## greatgazza (May 27, 2010)

yeah i totally understand what you're thinking about staying here. i really don't want to go abroad again if i can help it but wow what a nightmare for you spending so much and getting nothing out of it.

Maybe it would be worth an email to Peny and/or a phone call with her?  Just to see if she has any ideas?  I've rarely heard people sing someones praises so much and people keep saying how caring and understanding she is and really concerned about each individual so she might just have some thoughts without you having any outlay?  I don't know if she has anyone over here she would recommend for a hysteroscopy....possibly not.  maybe she would be prepared to comment on your latest hysto results tho  and suggest a way forward?  Maybe you could just have a hysto with her to 'correct/fix' things and then have tx here if you're still not sure about going down the surrogacy route...?  Or maybe as you say, she may agree with you about your lining issues and that will help you make the surrogacy decision.

really tough but i hope some others have some good ideas too.  

GG x


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## lulumead (May 29, 2008)

Hi JJ
Not sure I can help but I am at Create who do natural IVF, I think you can do back to back natural cycles as no drugs are involved, they just harvest your egg each month, although obviously sometimes there isn't an egg!


You could ask on the Create board which is over in the London section.


I agree your donor's partner and his sister sound like very lovely people.


xxxx


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## morrigan (Dec 8, 2009)

Not much of an expert  but thought I'd share my thoughts anyway.

I can't remember if you have a medical background or not but have you or your donors partner done a litrature search of the journals to see if theres been any articles written around it?

Have you totally 100% given up on working with your womb- I'm thinking that it would be difficult to start the journey of surrogacy unless you were totally sure you had decided not to persue trying yourself. I do know thinking changes on an almost monthly basis and what was said two years ago could be different now.

Some one told me when I was in Brno that they had been told by a consultant that the reason you leave 3 months between ivf cycles is that the body will recognize anything that needs healing and won't allow you to get pregnant and most likely would not respond to stims and that the puncture points from egg collection is enough to cause this- I'm not sure on the science behind this so don't know if having immune treatment counteracts this but I am assuming that its not so much of an issue when you are only collecting one egg and your not looking for a big response to stims anyway. I am also presuming that you would have more choice of stimm drugs to consider once you are not worrying about your lining issues if using a suragate- eg with lining issues you wouldn't even consider clomid but maybe you could for mild. I would think it then becomes similar to back to back iuis in terms of toll on the body which is not insignificant but copable with. I'm sure there is a financial/ emotional implication to it but your already dealing with this all on a day to day basis which can't be easy.

It sounds like your in great hands if there case conferencing you -   hope it all goes in the right direction very soon- and can I just add I think your amazing doing all this with needle phobia issues.


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## ♥JJ1♥ (Feb 11, 2006)

GG, Bethany,lulu and Morriagn thanks so much for sharing your thoughts.

I phoned ARGC to see if they would do mild/natural IVF- one mum who had a surrogate said that ARGC wouldn't do it for her only their own protocl.  I spoke to the nurse who then enquired and rang me back and they said they won't do mild/natural only thier own individualised protocol IVF, could do surrogacy.

Then this afternoon the consultant from CRGH called me back and said he had shown my 3d scan of my uterus to his colleague and they think that if I had further surgery on uterus they can make it better. I asked if it would have grown as it wasn't on my hysteroscopy slides etc, he said maybe. Again he said that he thinks that if I had a larger cavity it may give  alarger space for OE or DE to implan (so back where I was in 2007!!), I asked about the natural/low does IVF and surrogate and he said that they wanted to do the surgery etc instead, as surrogacy has a success rate of less than 10%. I just think that if i am going to contemplate using my OE I need to do it sooner rather than later, I did say that I could have the surgery and DE done later if need be!

I get my AMH and FSH etc back tomorrow so fingers crossed I still have some life left in the old eggs!

I have emailed Create to see if they can help but from their website I can see no mention of surrogacy!!! I've also contacted  the SIMS clinic in Ireland as my surrogate is in Ireland.

L x


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## bingbong (Dec 9, 2008)

Blimey JJ, I think that I'd be really confused by all that different info and trying to juggle so many clinics!!! It sounds like you have a few options though which is great and I really hope that the right path become apparent and that everything works out for you      

And once again your donor and his partner (and his sister) amaze   

 
bingbong x


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## ♥JJ1♥ (Feb 11, 2006)

not great news from my bloods my FSH was 17 LH 6.9 oestrodial 76 !! AMH not back yet. they think it was a true reading as the  rest fit 
ummmm back to the drawing board.


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## greatgazza (May 27, 2010)

Hi JJ

sorry to hear about your blood results.  What were they measured in as according to what mine were and my GPs ranges your LH seems ok and your oestradial?

GGx


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## ♥JJ1♥ (Feb 11, 2006)

I'm not too sure the units of measurement but the nurse at the Lister is sending me a copy, but the nusrse did say it isn't good news, indicated perimenopausal they think it is a true reflection as the oestrodial is ok etc.  I know that ARGC won't touch anyone with an FSH of > 10 - so my plan of surrogacy with my OE might have to go before it really got started, as the lady wont do surrogacy with DE's or her own eggs only mine.
L x


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## greatgazza (May 27, 2010)

I'm really sorry to hear that JJ    , what a tough time for you.  Do you have any thoughts yet about what route you might take or is it too soon to think and make decisions?

Hope you're doing ok.  

GG x


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## lulumead (May 29, 2008)

JJ, hope you can find somewhere to try...will Create consider it?
x


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## morrigan (Dec 8, 2009)

Not sure if it helpful but one of girls on reprofit thread has just got bfp with similar fsh- I know you are dealing extra problems with lining but she couldn't find a uk clinic that would let her attempt and ended up at reprofit who would - I know you don't want stress of tx abroad but I wandered if the logistics of shipping frozen embryos if you managed to be successful for surragacy would be an option.


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## ♥JJ1♥ (Feb 11, 2006)

I got my amh back fr the Lister and it's 0.7 so not much life left in the old eggs! Off to the alternative families show to see if I get a flash of inspiration. I haven't heard back fr Create I sent an email to them last mon. Xx


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## wizard (Nov 6, 2008)

JJ I'm sorry to read about your AMH results.  It seems that surrogacy would be problematic as I'm inclined to think that bombarding our already delicate eggs with drugs doesn't do them any favours.  It sounds like working on your lining and uterus might be the best way forward.  Considering natural IVF is a good idea, but there is the cost and the stress of cycling back to back (albeit without the drugs).  That doesn't overcome the problem of old eggs though; I think I read somewhere that for women aged 42-43,  approximately 1 in 12 of the eggs are chromosomally normal at best.

Would you consider having the surgery and working on your lining, and going for frozen donor embryos?  I know you want to cycle in the UK, but if you find that by day 10 or so your lining isn't going to perform then you could just cancel, and try again with the same embryos the following month.  Apologies if you've already considered this and ruled it out.

I hope so much that you can find a way forward; you are so very supportive of everyone on here and have been through so much yourself that you so deserve a stroke of luck and more.

Wizard x   

ETA:  Daft me, just realised that donor embryos would rule out your donor....  Scrub that idea!


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## Bethany915 (Aug 1, 2010)

Wizard - maybe not such a bad idea if JJ could get her KD to create some embryos with donor eggs and then freeze them until the lining looks good.  And I have heard that for us "older ladies" FET tends to work better than fresh embryos (I know that sounds crazy, but a few people have said that).

Good luck, JJ   - I hope the Alternative Families Show helps you to decide your next step...

B xx


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## Violet66 (Dec 28, 2007)

Hi JJ 

I'm sorry to hear of your poor results. If you are thinking of going down the surrogate route - then I think donor eggs are your only option. 
I'm a year older than you and my FSH and AMH levels are really good - but I've still been advised to give up on my own eggs.


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## Betty-Boo (Oct 14, 2007)

JJ     honey - what a merry-go-round!!  I'm spinning just reading through your posts.

Reprofit do min stim ivf - I did try it but the clomid made my lining too thin to continue, the price tag was approx 800 euros.  They aim to get 1 maybe 2 follies - and I think I did 5 days clomid followed by 3 days 45iu's of Gonal F - They believe that there's no point trying to over stim something that has very little there to stim.  

I hope you find a way forward ... thinking of you x x 

PS that is such a kind offer re surrogate x x x


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## greatgazza (May 27, 2010)

Yeah i'm considering Reprofit for min stimm IVF due to my age etc.

Mini just curious Stepan just emailed me back and in answer to my question about what drugs it involves he said 2 boxex clomid and 1 vial pregnyl.  He didn't mention gonal F.  I guess this could be different for each person could it?  As i sent him my FSH/LH etc and details of my two IUIs.

GG x


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## ♥JJ1♥ (Feb 11, 2006)

Ladies thanks for your support and ideas- my brain is buzzing  - I had a chat with Stephan, I didn't have my blood resutls then but he suggested surrogacy with DE's.

L x


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## Betty-Boo (Oct 14, 2007)

GG perhaps they've change their protocol .. it was gonal f or at least thats the one both me and roo tried.  All the best x x 

JJ      not surprised your head is swimming x x take care x


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