# Coco's Big Decision - hoping that you will help me decide on my next steps..



## cocochanel1 (Oct 15, 2009)

Girls, 

Like Winky, I have a big decision to make. I liked Winky's poll idea so much I thought I would ask you to help me by voting for what you would do in my shoes too..

So, in the last 3 months since my last negative (after 3 OE IVFs, 1 FET and 3 IUIs) I have done a lot of research, had 4 appointments with Dr Sher of SIRM, several appointments with my existing Consultant at The Wessex, an appointment with The Lister an appointment with Professor Franks (UK leading PCOS expert) and Professor Nick Macklon at Southampton University (linked to The Wessex).

I'm 39, have conceived naturally and easily 6.5 years before but since trying with donor sperm for the last two years have not had a positive result. 

Upshot of all of the above is my immune tests are clear, existing sperm is to be binned (there is a small (?) chance that none of the treatment has worked because there is an issue with the sperm) and new sperm imported from the States or Cryobank. I have PCO but not really PCOS. The only symptom I have is 'slightly' elevated LH levels. The focus now seems to be on reducing my LH to enable my eggs to develop without damage.

Dr Sher believes that the short protocol with late antagonist blockade has not been working due to elevated LH - - -> elevated testosterone - - -> damaged eggs = not pregnant. He is certain the solution is to manage my LH levels to normal via the Birth Control Pill for a month, then long protocol and coasting.

The Wessex (my existing clinic) have had a call with Dr Sher and have been sufficiently convinced by him to allow me to try his protocol with the exception that neither The Wessex nor my GP will prescribe the combination BCP for me due to my age (39) because they fear I may have a blood clot plus I have migraines both of which are contraindications. They feel that the risk of a blood clot is too much of a risk to take. Dr Sher's response is for me to take 81mg baby aspirin. In his view the BCP is an essential part of the treatment. The Lister are OK with prescribing me the birth control pill.

My Consultant at The Wessex has been invited by Dr Sher to spend some time at his clinic which she is considering - too late for me but perhaps will help someone else one day.

The Lister wanted to put me on Metformin (which noone else believes I need as my insulin levels are completely normal) and Menopur which again noone else agrees with as it contains LH (and given the whole point is to reduce my LH it seems really silly to put me on stimms with LH..). But the Lister do agree I should be on Long Protocol. They also suggested steroids but again noone else seems to think I need this given my immunes are clear. I think if I went with The Lister option I'd have to go back and ask for them to follow Dr Sher's protocol.

The Wessex also said that given Short Protocol has not worked for me it is time to try something else and her gut feel is that we should try Dr Sher's protocol.

Both Professors just believe I've been incredibly 'unlucky' because all stats and results looked good as did embryo quality and the fact that I get to blast... Professor Franks at Imperial has advised that I stick with The Wessex as he feels that they are open to trying Dr Sher/Nick Macklon's protocol, are a safe pair of hands and that they know me. 

So, several options:


(1) Continue at The Wessex - follow Dr Sher's protocol minus the BCP (which seems to slightly defeat the object) and risk that their lack of experience (ie. they have never followed Dr Sher's protocol or tried coasting' does not compromise my treatment. The Wessex have told me there is a risk I will be hospitalised with this protocol as OHSS is again very likely for me and with coasting it can increase the risk. I do feel their lack of experience has in part got me into this mess ie. the bad sperm should have been binned day 1 so we could have ruled out this all being a sperm issue (donor still has no proven fertility after 3 years as a donor...) and should have changed to long protocol earlier/ made other changes. 
Big downside is lack of experience, big upside is close, cost less prohibitive than The Lister or SIRM and they know me and how I respond well.

(2) Las Vegas SIRM (Dr Sher) - very expensive and logistically massively challenging because of my young son but no doubt the gold plated option including CGH etc. 
Big downside is cost and logistics. Big upside is experience.

(3) The Lister - great lab, more expensive, great results but slightly worrying advice after first appointment. It didn't feel very individual and it did feel a bit rushed. Perhaps could be persuaded to do Dr Sher's protocol but I'd need to go back and work it through. But do the Lister just have more experience than my existing clinic which would give me an overall better chance because they would have greater depth of experience to fall back on? Logistically still rather challenging for me - a 5 hour round trip for scans and treatment which given my OHSS history will likely be daily or every other day which would be hard... 
Big downside is cost (less than SIRM but more than Wessex) and logistics. Upside is experience with older women but not with me.

(4) Try somewhere else eg. Care Notts for CGH and another opinion. Upside is CGH. Big downside is distance from me (200 miles) re school run etc etc.

(5) Revert to IUI and try at eg Reprofit - cheap and for IUI easily accessible - the great disadvantage is at 39 only 1 in 8 or so eggs is likely to be ok, the advantage is that with my PCO IVF doesn't really suit me - it worsens my LH levels (which kill the eggs) and it gives me OHSS but at 39 1/2 can I afford to faff around with IUI??
Downside is hassle and potential time to conceive. Upside is cheap, physically less demanding.

THANK YOU for taking the time to read and respond to this. 
Coco xxx


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## indekiwi (Dec 23, 2008)

Coco, I've gone with 1.  It's a hybrid for sure, but they're close, they know you, the logistics are do-able, the costs are lower than Lister or SIRM, and personally, I think the dodgy sperm may have played much more of a role than is comfortable to acknowledge.  Finally, given the strong possibility that you may end up in hospital with OHSS, much better to do so here where family and friends can readily step in and help with poppet and where you won't be crippled by medical costs. 

A-Mx


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## jwb (Jan 4, 2009)

Tricky
I think I would pick option 1 on the basis now you know more you could probably adjust your treatment to match the other centres and likely afford (both in time and money) twice the number of cycles.
I wouldn't take the combined pill at 39 if my migraines were focal (numbness/ tingling in one arm or leg or side of face) or with aura (know migraines are coming) especially as you have a son- no good conceiving if you have a stroke! I assume your weight is normalish and you don't smoke. If all above are OK I might risk it especially as its only short term.
Good luck whatever you decide
Janet


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## suitcase of dreams (Oct 7, 2007)

Coco, 

I tend to agree that a UK option would be better for you given the logistics of going to Las Vegas and the amount of time you would need to be away. Can you not simply get the BCP presribed by Dr Sher and then have tx at the Wessex? Or can the Wessex be further persuaded re BCP since they have been persuaded about everything else! They are clearly best option from logistical point of view...and although they do not have experience with this protocol, it sounds like they have made every effort to get up to speed with it. 

If there's no way to get BCP and have tx at Wessex, and you feel BCP is key to the success of the protocol (which it sounds like you do/Dr Sher does) then I would go with Lister but get them to do the Sher protocol

Good luck with the decision, it's not easy, especially when you have a little one to think of already,
Talk soon
Suitcase
x


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## midnightaction (May 20, 2003)

I agree I think that The Wessex is your best choice, using Dr Sher's protocol, it means you get the best of both worlds (What a gem Dr Sher is for doing all that leg work for you and talking to The Wessex knowing that you are not gonna cycle with him  ), you get a clinic near to you and your family and one that you know and trust, plus a brand new protocol.

My one piece of advice would be to try and push for the protocol that Dr Sher has suggested, I have spoken at length with him about different protocols and he has said to be that giving someone the exact and correct one makes all of the difference (As I am sure he has said to you also !).

Sorry it is only a short answer I am just on out to work but I didn't want to read and run

PM me if you get a chance I would be interested to hear all about your chats with Dr S, I have another call with him just after Christmas and would like to get some ideas for more questions 

I hope your able to make the right choice 

Sarah xxx


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## Felix42 (Oct 14, 2007)

Coco, wishing you lots and lots of   with your decision making.  I chose option 1 as I thought they seemed very open to Dr Sher's approach and you will be close to home in case you do experience OHSS again (do hope not though).  Maybe there is a BCP that is less risky that they could agree to?

Love and hugs, Felix xx


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## kylecat (Oct 18, 2007)

I have gone for option one Coco as I know how convenient the Wessex is for you. They sound like they are open to other approaches and although they haven't produced a positive result for you yet, they know you and are a very caring clinic. Dr Ingamells knows her stuff and I'm sure she would do her best for you by following this new protocol, will text later, 

Lots of Love
Kylecat xxx


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## bingbong (Dec 9, 2008)

I've gone for option 1 too, I don't think that it is worth the risk to go out to SIRM and it's great that the Wessex will follow his protocol and it sounds like they could contact him if needed. I hope that you can work out something with the BCP though.



Bingbong x


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## muddypaws (Apr 10, 2008)

Coco, like everyone else I go for option 1. They sound willing to be flexible and take advice - no small thing for the medical profession. Like Inde, I have to say that I am still really surprised about the sperm issue and that's the thing that would worry me most about how Wessex make decisions. No proven fertility in 3 years with non-motile sperm? Surely this must be a factor. quite worrying really that this donor is still being used. I reckon, new sperm, Dr S protocol even minus pill is best option - best for you and poppet. No point in killing yourself...try new sperm before taking the risk of pill. Good luck and have a fab Xmas.

Muddy x


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## Kiwi_in_uk (May 25, 2009)

Coco

I would try IUI with a new donor at your local clinic without Dr Sher's protocol.  I posted a long one on Winky's explaining my objection to Immunes treatment, repeated below:

Immunes Treatment
I feel that this is a red herring.  I explored this after recurring miscarriages investigations including immues investigations (expensive!!).  I concluded that adding all sorts of chemicals to my body would not only drive me insane, but had yet unknown / fully researched consequences for my baby.  I know that there is a split opinion in the medical community about the validity of immunes treatment and I have landed strongly on the mainstream for this.  I concluded that if someone offers you a magic ‘cure’ for simply a higher price then it needs to be viewed with skepticism.  Much as one would in business or everyday life if something is ‘too good to be true’.  I can refer you to some articles with recent medical research if you want to know more.  Or understandably you probably have formed your own opinion already.  For this personal opinion, plus the cost, I would not pursue any treatment using immues treatment.


I would also try IUI since there is a chance that this donor rather than your eggs are the problem.  Also, its a better environment for your baby to stick if you don't have any drugs.

Failing that try IVF at whatever place is more convenient for you, because that means less stress and a better body for your baby to stick.

From what you have said about your FSH and AMH (in your signature) you still have a chance with IUI, which is as good as it gets if you had hubbie there to put it in, so to speak.  Worth a shot before putting all that money into immues.

But at the end of the day this is only my opinion and based on personal experience and only you know what is best for you.

Kiwi


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## Damelottie (Jul 26, 2005)

Coco - I honestly don't understand enough about the issues to give an informed opinion but I _always_ wish you the best of luck whichever you decide


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## Jammy J (Sep 28, 2009)

Hi coco

OMG such decissions... I wish I could help but I am only just starting out so really I am no expert...
I hope you manage to make the best decision.

JAH


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## upsydaisy (May 9, 2009)

Hi Coco  

Great news that you've found a way forward.  I think I was the 1% that voted for IUI (but didn't get round to posting a reply  ).  My consultant was always of the opinion that IUI was a better option for anyone with PCO and his explanations about hormones etc seemed to make sense. I'm sure the Wessex will be as good as anywhere and going locally will mean lots less stress and hassle.  

So so hope this works out for you  
Upsy
xxx


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## ♥JJ1♥ (Feb 11, 2006)

Coco so pleased you've got a plan- I wouldn't recommend the bridge after 2 ivf cycles there but that is purely based on my own experiences I also dislike like the lack of seeing a cons each visit and choosing your cons and continuity of care x


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## Jammy J (Sep 28, 2009)

Hi Coco

IUI at the Agora in Hove is £695, I am not sure if this is too far from where you live though to even contemplate?

JAH x


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## muddypaws (Apr 10, 2008)

Great you've made a decision Coco. Don't have any ideas to offer about where but guess if you import your wrigglies then go for convenience/price I suppose. Good luck...I think new swimmers will be the answer.  

Muddy


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## Tombliboo (Dec 6, 2009)

Coco - when comparing iui costs remember to ask the clinic whether they charge extra for preparing the sperm per cycle. These hidden charges can add up. As an example, LWC charge £550 for a natural iui (with no scans - you just tell them when you get your surge) - but in addition I believe they charge £245 for prep of imported sperm per cycle. HFEA fee is £52 per cycle and annual storage of imported sperm is about £275 (per patient's store not per amp!). So for a simple 5 minute procedure and no scans it adds up to £850 per cycle plus annual storage (and of course cost of sperm, courier and UK slot). I believe some clinics quote a price which includes preparation of the sperm. 

Hope all works out for you (I have a friend in her late 30's who, after 4 failed ivfs, tried iuis and got pregnant on 2nd attempt and another whose 3rd ivf was converted to iui due to low response and again was successful)

Tombliboo 
xxx


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## cocochanel1 (Oct 15, 2009)

Tombliboo,
Thanks for the positivity and tips re IUIs - I really needed to hear that. It feels like a big leap of faith moving away from the big guns of IVF to IUI but given that the drugs have caused me so many issues perhaps drug free will be the answer. 
xxx


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## Tombliboo (Dec 6, 2009)

Coco - i'm obviously no expert, but if I was your age and still producing eggs that got to blastocyst successfully I would take great heart re their quality(I'm younger than you and could only have dreamt of getting to day 5). OK IVF didn't work (perhaps sperm issue or drugs or protocol) but IVF doesn't suit everyone. I would ignore the iui stats, and, as my friend who turned to iui did, find a clinic that opened 6 days a week that was as local as poss, not fret about it too much (perhaps not tell anyone to avoid pressure), make checking for your surge a routine from day 10 or so (if normal cycle ), pop in for the iui (she did this in her lunch break) and then just not think about it for 2 weeks or change plans. She said she would give it 6 tries and found that not making it into a big deal and not telling family really helped.  Best of Luck xxx


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## lulumead (May 29, 2008)

thanks for posting this tombiloo...I'm similar to Coco in thinking of swithcing back to IUI so good to hear it can work.
xx


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## Tombliboo (Dec 6, 2009)

Lulumead - yes I've followed your story with interest (esp re adoption - i've tried in vain to adopt a girl from India but it just became too difficult). The reason my friend turned to iui was that she'd read that a lot of people mysteriously conceive naturally after failed ivfs (perhaps the drugs in some way prepare the body/balance hormones who knows) but as a single gal this wasn't going to happen. So iuis seemed the logical alternative. 

The other thing she said that I thought was interesting was that her consultant had said that some of her patients had got pregnant after having an iui on the same day as the surge rather than the conventional 24 hours later. This way the sperm is there ready for when ovulation takes place. So if the 24 hours later method isn't working (method of first choice), same day iui may be an option. Makes sense if you think ovulation can take place 12-48 hours post surge, egg most receptive to fertilisation 12 hours post ovulation and frozen sperm can last 36-48 hours in the body but takes a while to travel up tubes. Timing is crucial to get the party started. Same day iui is also the only option if you surge on a Sat morning and clinic closed on Sun. All the best xxx


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## lulumead (May 29, 2008)

hi Tombiloo thanks for that, is all very reassuring and I think there it something in the no drugs/less drugs for some people, just hoping tubes are clear, having them tested soon.

Re adoption, for intercountry Russia seems to be the quickest at the moment, around a year.

xx


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