New endometriosis diagnosis and starting IVF

[Norts10]

Hi everyone,

Just wondering if anyone is in the same boat as me at the moment.
Been TTC for over 12 months now with no BFP.
Went to a fertility clinic for a MOT and they found a suspected Hydrosalpinx. I’ve just had a laparoscopy this week and consultant said I actually have severe endometriosis in my left ovary and Fallopian tube. This has come as a complete shock, as had very mild symptoms which I always just put down to bad periods.

Good news is when the dye studies were done, everything else, including right tube and ovary looks completely healthy and normal which is great however DH has low motility and morphology which will make it more difficult.

Gynaecologist said there’s no reason why we can’t still get pregnant naturally but the fact it hasn’t happened in over 12 months, the IVF consultant is suggesting we go down that route. It was a bit of a shock to us and seems quite drastic given what the gynaecologist is saying but I don’t want to waste time trying naturally (and get older) if we need IVF in the end anyway. It’s so hard to make the decision though.

Is anyone else in a similar situation and just starting out with the IVF process? Or in a similar situation with endometriosis? It would be great to support each other and hear other stories.

I have silent endo (no symptoms at all) so it was a shock to me too. Tried naturally for 3 years and had IVF in the end which was successful after several rounds as I have low egg reserve (probably due to the endo). Wish I'd started IVF sooner to be honest. What is your egg reserve like? If it is ok you could try for a few more months and then move to IVF?

@MabelG thanks for your reply
And congratulations that your IVF finally worked too. It’s good to hear you wish you’d started sooner, I think that’s the thing I want to avoid as I think we’d end up down that route anyway so in my head we might as well go for it sooner.
I don’t think we would start IVF until March due to other commitments we have so we would have a couple of months left to try naturally anyway.

I’ve not had my egg reserve checked yet, we have a follow up call next week with the IVF consultant so I’ll ask about that then, thanks!

@Norts10 so we've been ttc for 6 years, but when I came off my pill I was in so much pain & ended up in hospital with lots of tests. They said I had hydrosalpinx in both tubes & cysts on my ovaries. I had an emergency operation 12 years prior & they said it's all the adhesions that caused it & they wild monitor it. They did that for a while then said let's drain the hydrosalpinx anyway they couldn't gain access. I was then referred to a specialist at a different hospital who said he suspected endometriosis, he was able to gain access & said no cysts, no endometriosis but couldn't flush both tubes the dye couldn't get through 1 & did slightly on one side so sent me on my way & said try. Anyway a year later nothing happened apart from pain coming back so was sent to see him again & he said we have to remove the tubes to be able to move forward with IVF as the hydrosalpinx (fluid) if left can leak & damage the embryo, I agreed to it then covid hit so had to wait 15 months for this to be done. On my discharge notes I saw it said endometriosis so I guessed I did have it but never been told in person as was never seen for a follow up. I was then sent to gynaecologist in my area who said my BMI was too high to be referred so I smashed it & after 3 months and lost 1 stone he was shocked so referred me & I lost a further stone before being seen at the clinic. Unfortunately after 2 cycles still BFN.

Sorry to hear you still haven’t got your BFP, are you doing another cycle ?

Thanks for sharing your story.
The IVF consultant thought my issue was a Hydrosalpinx but the gynaecologist said it is endometriosis. It’s so confusing to be honest.

I am so worried about it as he also said my Fallopian tube and ovary was so badly fused with other tissue he could barely see it, so I’m not really sure how he could say for definite there is no Hydrosalpinx. He also said it would be major surgery to remove the damaged ovary and tube and he doesn’t want to do it as the risk to damaging the other healthy parts is too high. Plus I’m not really in much pain or have symptoms with the endometriosis so he doesn’t think it’s worth it health or fertility wise. He is telling us to keep ttc naturally or if we do go ahead with IVF there’s no reason for it to not work.

I’m just so worried about the mention of the Hydrosalpinx originally, in case it is actually that and it stops us conceiving. It’s hard to put so much trust into them, even though they obviously are the experts.

@Norts10 so the CCG in our area offer 2 fresh & 2 frozen cycles & we have had both our fresh cycles but unfortunately on both cycles we haven't had any to freeze, we are definitely going to try again but just waiting for our follow up then we are working out the best package for us to do. We have decided tho we need a bit of a break from it as found it very tough this time. It's so annoying isn't it when they don't know for sure as we put our trust in them to know & advise what is best. Can you be referred via the nhs?

@Reefy ah I’m sorry to hear that. Hoping you can have a nice break before you’re ready to start another round!
My GP is a nightmare (hate to say it at the moment) but it’s one of those where you have to log on at 8am for same day appointments and when they’re gone they’re gone. I’ve not managed to get on yet. I’ll keep trying though as I think we will go down that route for IVF and try to do at least one round on the NHS. It’s all such a minefield though, there’s so much to learn about everything, it takes a lot of time up.

@Norts10 yes I need it mentally, emotionally & physically I'm listening to my body! Planning on enjoying a few drinks over Christmas with the family. Oh I know it's so hard or if you get a receptionist who is awkward! Keep trying & best of luck! X

@Norts10 that sounds like a sensible timescale. I remember when IVF was first mentioned to us and it was hard to accept but once you get started it is ok. Best of luck to you on your journey

@Norts10

Hi, I've just came across this thread.

I also have suspected hydrosalpinx and endometriosis. I was wondering how you are getting on? X