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Starting IVF and scared

665 Views 4 Replies 5 Participants Last post by  greenhaggis
hi all,
im 22yrs and have been told ive got lupus for the last year but ive been gettin symtomps since i was 12yrs,
late last year i got a cist on my left overy and because of the infection it caused i had to have it removed, also the infection caused my tubes to block, my right overy is said to be ok tho, so very soon im due to start IVF,
i'm scared tho as ive been told people with lupus are prone to miscarry,
I lost a son 3yrs ago at 6months gone but that was cause i was punched down a flight of stairs,
Im gettin my IVF on the NHS so only have one shoot, we cant aford another go,
please can you give me advice on the best ways to help me, like foods to eat, tablets to take, to the best way to have a healthy baby,

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People with lupus who also have the clotting antibodies are the ones that are more prone to miscarry. So if you do not have anticardiolipin or lupus anticoagulant antibodies as part of your lupus positive blood tests, then you should not be much more likely to miscarry than the average woman. I would be sure those tests have been run, as well as Leiden Factor V before doing the IVF process to ensure you get the best possible care given this is a one-shot deal for you.

Sorry to hear of losing your other pregnancy, especially under the circumstances if I'm understanding them correctly. Hope you've gotten rid of that loser responsible for that!

As for preparing to have a baby, that should ideally start a few months before trying to conceive by eating very healthy diet with lots of fruits/vegetables and healthy grains and protein. It is important to get enough folic acid in your diet through fortified foods or a basic multivitamin or a prenatal vitamin too, this is most important before getting pregnant as well as during the early months of pregnancy. There are many websites out there give excellent advice on prenatal care/diet, a quick google search should produce many for you ;)

Best wishes to you!
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I have been trying for a baby for about 1 1/2 years without success. With all the factors involved (lupus, endeometrisis and various other problems) it is looking unlikely and the fertility specialist has advised us that adoption is our best option (although i'm not sure about that at the moment).

I wanted to have IVF but my lupus consultant has been liaising with the fertility consultant and they've decided to it's too risky due the drugs you have to take. I then found it interesting that people are having IVF with lupus. I just wondered what others have been told?


There seems to be some divided opinion about IVF and hormonal stimulation for women with SLE and APS.

Here are some articles about it:

The most important message is probably - make sure that when you discuss IVF with the fertility specialist that they are aware of your SLE diagnosis and whether you have APS or not, and also ensist that your rheumatologist and fertility specialist are communicating with each other.

Good communication and good care are the best "guarantees" of a good outcome.

All the very best:blush::blush::blush:

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Sorry to hear your dilema, I hope someone will be along with some really good advice!

In the meantime I would check with you specialist first, but most people take vitamins specially formulated for pregnant women with folic acid (you can use same pregnancy vitamins prior to conceiving), eat healthily etc. The IVF clinic should have leaflets they can give you as to current guidelines of certain foods to avoid once pregnant (changes from time to time)

Just a thought, have these two specialist decided between them without the presence to you and your husband/partner!

If I was in the same position over something so important I would want both specialists (present at same time) to discuss options with me and my husband - not for them to make important decisions for us without our presence - or to look at it the other way take freedom of choice away. If they have been reading any literature for their own information to help them with their decision ask them if you can have access to that same information!
Have you thought that there is also another angle to it which could be cost factor for the NHS - I know you have said that the NHS were going to pay, but perhaps treatment will be more now with respect to the extra care you will need, this is perhaps something the specialists will consider without telling you.
I'm not sure if I have made any sense or if indeed my waffling is of any help!
Hopefully someone else will come along with some other advice or personnal experience.

Good luck to you both!

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