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Daisy

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Reg: Jan 19th 2008

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Saturday, January 19th 2008, 2:08am

New here - please help!

Hello! I am desperate for some help and advice about IUI and am really hoping this may be the place to find it! Here is my story...

I suffer from a disease called Cystic Fibrosis (CF) which causes all the mucus in my body to be very thick and sticky. This mainly causes problems in my lungs as it attracts infection which causes progressive lung damage of a serious nature. It also often causes female infertility because the cervical mucus is very sticky which prevents sperm from entering the cervix.

My CF medical team have said I am healthy enough to carry a pregnancy, however after several years of trying I know that I am unable to conceive naturally. 6 months ago I was referred to an NHS fertility specialist who has been doing numerous tests (HSG, blood tests, 2 PCT's, ultrasound scan of ovaries, etc). The results of this have shown that my fertility appears to be normal apart from my cervix being blocked by sticky mucus.

My consultant has now said that IUI is the best treatment for me (as it gets the sperm past the cervical entrance). However he is refusing to offer me unmedicated IUI as he says that he doesn't have enough funding and resources to do anything other than medicated cycles (as these have better chances of conception so use his resources better).

I desperately want to try unmedicated IUI for at least a couple of cycles because my health condition means that I would be unable to carry a twin pregnancy (and IUI with fertility drugs causes a much higher chance of multiple pregnancies). If I got pregnant with twins I would have to have a selective termination, which is something I really don't want to have to face.

Even the NICE guidelines state that women should NOT be offered medicated IUI unless they have endometriosis (which I don't have) because of the higher risk of multiple births. Since my infertility is only due to a physical blockage of the cervix I can't understand why I shouldn't be allowed at least 1 or 2 courses of natural IUI to see if I can conceive this way.

This doctor is the top consultant at the clinic and he has said there is no way he can offer me unmedicated IUI. Can he do this? Do I have any rights to complain? Or do I just have to accept that the only way I can have natural IUI is by going private (which at £1000 a treatment I simply can't afford).

Sorry for the long message but I really hope someone can reply. I'm getting so stressed over this and it seems unfair that he is adding all this extra pressure and risk when I am already going to be facing a high-risk pregnancy as it is :(

This post has been edited 1 times, last edit by "Daisy" (Jan 19th 2008, 2:11am)


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Saturday, January 19th 2008, 9:10am

Hi, Daisy
I am not sure how you can go about this. I was taught that a patient always has the right to refuse the treatment offered or to stipulate changes that make it easier for them.
Medicated cycles of IUI are indeed higher risk of multiple pregnancy but, as you are monitored throughout to see how may eggs you are developing, you could opt to abandon if there are too many - that is even before insemmination occurs. The problem with unmedicated cycles is that the success rate is actually very low and that is why they are pushing for a medicated one. They would prefer success with as few cycles as possible.


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Saturday, January 19th 2008, 9:35am

Welcome to FZ sorry i cant help with you question but i'm sure you'l get loads of help and advise from these lovely ladies xx xx xx


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Saturday, January 19th 2008, 10:13am

rene
has a good point you could go for it and decided to stop if too many follies are produce, they can adjust your drugs through the cycle and with close monitoring i think this could be possible
TTC 12 years

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both tubes removed

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Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

Daisy

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Saturday, January 19th 2008, 1:49pm

Thanks so much for replying ladies - it's so nice to know there are people who I can ask about all this! I had thought about the issues of abandoning a cycle if too many folicles are produced, but it's my understanding that normally they would only do this if there are more than 2? If I abandoned it every time there was more than 1 follicle would I end up constantly abandoning cycles? And since I'm ovulating normally anyway, would there be any advantages to medicated IUI if I wasn't going to do it if there was more than one follicle?

Sorry for all the questions! My consultant is not very communicative and I really don't understand enough about the treatment, but I'm reading as much information as I can to learn myself!

I know three other Mums with Cystic Fibrosis who had medicated IUI and all ended up with twins. Their health was way better than mine though (their lungs were functioning at the same level as any other woman's where as mine aren't) so it wasn't a problem for them to get through the pregnancy. But I know that a single pregnancy is going to be very tough for me and that no one would advise me to go ahead if it were twins for my own safety.

This post has been edited 1 times, last edit by "Daisy" (Jan 19th 2008, 1:52pm)


kar1

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Saturday, January 19th 2008, 1:59pm

yes i agree you might well end up cancelling cycle after cycle.

I think as your current cycle don;t want to do this then your only real choice is private tx

cons that aren't very communtive really annoy me, i really think they should help us understand, i am very lucky and have very good cons

the more you can learn the better, knowledge is power.

there is always a small chance of twins even with naturally conception but im sure you are aware on this

the other option is IVF and having SET (single embryo transfer ) would they fund this?
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

Daisy

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Saturday, January 19th 2008, 2:11pm

Thanks Kara, yep I know I could have twins without any fertility drugs but I understand that the risk of that is just over 1% where as the risk with the drugs can be about 20%. Obviously if it happened naturally I would have to deal with a selective reduction but its not something I would like to increase my chances of having to go through unless I really have to. I also know of other Mums who have conceived within 1 or 2 unmedicated IUI cycles, so feel it would at least by worth a try at this since apart from the cervix being blocked, my fertility is otherwise unaffected. I have an appointment again on the 7th February and before that I'm going to speak to my GP and CF medical team to see if there may be other possibilities of being referred to another NHS hospital near me. Does anyone know if this is an option?

This post has been edited 1 times, last edit by "Daisy" (Jan 19th 2008, 2:11pm)


kar1

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Saturday, January 19th 2008, 2:12pm

i can't see why they wouldn't refer you to another clinic.
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

Daisy

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Saturday, January 19th 2008, 2:21pm

Just wanted to say I'm hoping so much you will conceive very soon Kara, it looks like you have been through so much from your signature. Keeping fingers and toes crossed for you - you're right, you will win this fight I'm sure xxx

kar1

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Saturday, January 19th 2008, 2:22pm

thanks hun and i hope you get some good news at your appointment

keep us updated
TTC 12 years

2 early losses

lots of ops and tx

both tubes removed

5th fresh short protocol
:BFP:

Tyler May born 5/5/2010 by emergency c section. Tyler is our sunshine

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Saturday, January 19th 2008, 6:24pm

Hello and welcome :bye:

I'm sorry i can't help you with your problem, but i just wanted to wish you the best of luck with your journey and i hope everything works out well for you

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Monday, January 21st 2008, 4:32pm

Hi Daisy,
I don't live in the UK so I don't really know what is usual for UK consultants to insist on, but I reckon if it's an option, you should try and go somewhere else, and find someone who will listen to your concerns. I am having unmedicated IUI's, the very first one was because they wanted to see what sort of quality they could get from DH's sperm after washing, and they did the IUI so's not to waste it! Also if you go private, maybe the prices differ from place to place as 1000 pounds sounds really expensive to me, I am only doing unmedicated IUI because it is inexpensive, and better than doing nothing while waiting to get the go ahead to start something else. For me part of the cost is covered by health insurance, but if not it would cost in total about 150 euros per cycle. This covers one blood test (to time ovulation), one ultrasound, the insemination, the sperm preparation, and 2 (self administered) injections, one to trigger ovulation and one to boost my progesterone levels about a week after insemination ('cos mine are a bit low).
I wish you the best of luck!


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