Conflicting info about IVF and endo etc

[Julie_82]

I had 3 IVF transfers last year, back to back, and they all failed. At the time I was told my embryos looked good and they were happy with them. After the 3rd attempt, the FS told me she wouldn't do any more until we'd done a laparoscopy (she suspects I have endo, but I didn't want to do the lap before starting IVF), which I agreed seemed like a good idea.

We took a 3 month break after the last IVF attempt, then I went and saw the FS again. She told me my embryos hadn't looked good at all, they hadn't developed they way they should have by day 5 (this was news to me, if I had known they weren't developing the way they should have, I may not have gone ahead with the transfer.) She said we should do the laparoscopy and gave me all the info. She told me I may not even need IVF after doing the lap, and she's had clients who have gotten pregnant naturally within a few months of doing the surgery.

Before deciding to go ahead with the lap, we did the karyotype blood test on me and hubby, and also FISH and SCSA on hubby. When all these came back normal, I talked to the FS again about doing the laparocopy.

Then it was suddenly a different story. Now she tells me we can do the lap, OR we can just do another round of IVF, because my last batch of embryos may just have been a bad batch, and if we do it again we may get better embryos. She also said there is conflicting evidence around the benefit of doing surgery for endo before doing IVF - apparently some studies report no increase in pregnancy rate after doing surgery.

She said if we do IVF again, we should put me on melatonin, but when I google this it comes up as an alternative treatment.

So yeah, first she tells me we have to do the lap, now she tells me the lap is pointless. I don't know what to do or think, not feeling confident about doing either treatment (lap or IVF). I think there is a conflict of interest for the fertility groups too. If they get people pregnant, there's no more money in it for them, so I'm not confident they wouldn't just string us along for as long as possible before doing stuff that actually works. But obviously we can't afford to keep doing this forever (we don't have private cover).

Also weird that she tells me surgery for endo is pointless, when I thought the general consensus was that surgery improves chances of getting pregnant. I also found an endo support site that says surgery or medication for endo before doing IVF improves pregnancy rates.

So I don't know what to do. Any thoughts on what the FS has said? Anyone have any info on the lap for endo being effective or not? Anyone tried melatonin?

[MamaK]

I am so sorry you are going through this.

I have had 3 surgeries (all laparoscopic) for my endometriosis.
I've had a major reduction in my pain and other related symptoms. I don't know if my surgeries helped me fall pregnant, I definitely haven't had to do IVF.

My advice would be to find a Gynae who is experienced with endometriosis and consult with them. Many surgeons will use a laser to 'burn off' endo patches but what you really want is for the endo to be 'excised'.

I mean no offence but your FS sounds a bit wishy washy what with changing her story all the time. You need someone on your side who is going to give you answers and consistent advice.

My recommendation would be to see a Gynae with much experience in endometriosis.

Good luck and I hope you get some positive news asap!

[Julie_82]

Thanks for your reply

I don't have any symptoms of endo, other than some mid-month spotting. So until we failed to get pregnant, there was no reason to suspect endo. The only reason to do the lap would be to improve fertility.

I just looked at some studies. Apparently the FS is right, there is no proof that doing the lap before IVF is beneficial, but it can be detrimental because of possible complications and possible damage to the ovaries etc. But the lap does improve fertility in women who are able to conceive naturally (at least that's how I interpret what I just read).

I agree my FS is really wishy washy. And she's not telling me what she thinks I should do. She has basically said "we can do either of these, you choose", but because of conflicting info and not being a medical expert, I don't know how to choose.

I will have to look at the studies more. If it's true that doing the lap has no proven benefits, then this would be a waste of time and money. But that begs the question why did my FS then say we should do a lap?

Blergh.

Is it possible to see someone in the public health system about endo? Do I just get a referral from the GP?

Also, does anyone know a good fertility group on the northside of Brisbane? I'm with QFG at the moment.

[myturn]

I don't know much about endo. But my FS said to have the lap first before we did anything so we could see what was happening inside. He said there wasn't much point of you didn't know whether your tubes were blocked or if there was scar tissue impacting on fertility. So we did that even before trying clomid or anything.

If you don't tryst your FS it's good to see someone else, and it sounds like the mixed stories she gives is reason to get a second opinion.

Worth asking the Gp if there are any public services that can help.

[MamaK]

I got a referral to see a Private Gynae through the public system and she has been my god send!
I am in SA so I do not have any recommendations for you.

As for potential damage to your ovaries etc - a skilled Surgeon should have no trouble at all preventing this - unless of course you have major abnormalities, which is not necessarily the case for you.

If you can, I would wait and get the referral and go from there.

[~Gee_Whizzy~]

Sorry you're going through this 😔

Unfortunately, the only way to diagnose endo is via a laparoscopy. Even though you don't have the typical symptoms of endo, it doesn't rule it out! I'd be getting a second opinion and seeing a gynae who specialises in laps and endo diagnoses/treatment that way, you at least know what you are dealing with (if anything?)

[AlligatorsMum]

I am from brisbane and work at a hospital with a few specialists in ivf (don't work for them- but know a lot of them) not sure if I can post on the page or not? If you want to pm I can give you some names.

[Julie_82]

Thanks for all your replies.

Up until a few days ago, my FS kept saying I should have the laparoscopy too, so that's what I expected the next step to be. So it's kind of confusing when she then turns around and says the lap is pointless and we may as well just do IVF again.

Also not happy that I was told my embryos were looking good, apparently just so I'd go ahead with the embryo transfers, only to be told later they weren't developing properly.

Confidence lost. I've contacted another clinic to continue treatment, but have yet to hear back from them. Seems to me that doing a laparoscopy is a good idea, just to see what's going on in there.

[Mildez]

I personally would want the lap for myself. Do you know have known diagnosed problems affecting fertility or do you fall in the unexplained category? Working in theatre with FS's and learning a little along the way as well as having an interest in fertility treatments due to my own past bad luck I feel a laparoscopy is really a baseline for infertility investigations even if there are other known problems. A bad tube for example can prevent implantation or cause a miscarriage which cannot necessarily be picked up any other way except a lap.

[anney]

I agree that a laparoscopy should be done. My sister did IVF due to her husband having a vasectomy many years ago. Her FS insisted on a lap and found she had issues so could work with them.

[Julie_82]

I personally would want the lap for myself. Do you know have known diagnosed problems affecting fertility or do you fall in the unexplained category? Working in theatre with FS's and learning a little along the way as well as having an interest in fertility treatments due to my own past bad luck I feel a laparoscopy is really a baseline for infertility investigations even if there are other known problems. A bad tube for example can prevent implantation or cause a miscarriage which cannot necessarily be picked up any other way except a lap.

No known issues, "unexplained" at the moment. My FS said I most likely have endo. No symptoms, just based on probability. I didn't want the lap when I first started seeing her though, so I asked if we could go straight to IVF, and she said this is fine because endo shouldn't prevent IVF from working.

[FrankieB]

Hi,

Perhaps it might be an option to seek a second opinion? If you are doubting your FS perhaps your mind would be set at ease if you spoke to another. I had lap surgery after my first transfer, and then had 2 transfers later. I'm yet to conceive - but there are many other factors weighing in for me. Its so hard trying to base our decisions on studies, especially when you can't control all the factors. I had a cyst cut from my left ovary and was still able to harvest 18 eggs - but the next person you speak to may be so different.

I am sending all my positive vibes to you xx