Losing hope and feeling let down - Fertility Network UK

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Losing hope and feeling let down

16 Replies

I had my second laparoscopy last week, where they told me they treated some endometriosis & scar tissue. My one remaining tube was stuck to my womb and blocked with endo and he said he was in two minds weather to remove it or not but that he managed to unstick it and flush it through so it was unblocked.

He said there's every chance I could now fall pregnant naturally but no guarantee as may still be damaged due to the stress it's been under.

I then asked if the IVF consultant would want me to have it removed and he said no as it's not hydrosalpinx and there's no reason to remove it as it is now clear and flowing freely.

I had a meeting with IVF consultant yesterday but he hadn't yet received my results but said all sounds fine and as long as the letter confirms it that we could go ahead with IVF in January. We had our chat and plan with the nurse and even got our dates booked in.

The following evening I had my follow up appointment with the gynaecologist that did my op and he confirmed everything was normal and no reason why we couldn't go ahead with IVF.

Today the IVF consultant rings me asking me to go down and see him. He tells me that he has now recieved the letter in which it states my remaining tube is a hydrosalpinx. The IVF consultant is saying that he would want me to have it removed or clipped before we can start IVF meaning another laparoscopy.

I can't understand why he told me and my partner twice that it wasn't hydrosalpinx and gave me false hope.

We have rang his secretary and explained it and asked maybe if it's a typing error or a misunderstanding but she was so rude and unhelpful and wouldn't even look into it for us. I'm so worried I really don't want to have another op and lose my only tube.

Sorry for the extremely long post just wondered if any one had any advice as feeling pretty low. Xx

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16 Replies
Ivf3rdround profile image
Ivf3rdround

I'm so sorry you are going through this.....I really hope it's a typing error, as that's is very wrong have you been able to get in touch with the doctor who told you it was ok and ok to go ahead with ivf,

I know it's hard not to get down, but you are getting that one step closer! even if you have to have tube removed it is progress. is there time to have it done in time for ivf in January?

in reply to Ivf3rdround

Thank you for your reply x

No his secretary just said he was in surgery all day and that they would have to sort it out between themselves so we asked the IVF doctor what to do and he said to email her instead, so she replied saying she's sent the report off and forwarded our email on to him.

I don't think I'll be able to have it done before Jan as I only had the laparoscopy last week so I'm not sure how long I would have to wait before having another one? plus there's probably a waiting list. X

Ivf3rdround profile image
Ivf3rdround in reply to

😊...Oh God nightmare isn't it.....surely it has to be a mistake, hopefully it is and you can carry on, I can't see how he can tell you it's not hydrosalpinx then tell clinic it is.

in reply to Ivf3rdround

Yep, it's been one delay after another but I guess that's part of the journey.

I hope it is a mistake and i can start in January, my dates were similar to yours so would be nice to have each other to talk to x

Ivf3rdround profile image
Ivf3rdround in reply to

Yeah it would be great!..... I was quite naive before ivf when we got our 1st bfp on first go I was like awesome we done it that's it we having a baby, and thinking how easy it was 🙈 it certainly is a journey with ups and downs but hold on to the hope of getting your baby in your arms, once we have that all these small set back/issues will feel like nothing 😊 do you know when you will find out about the letter? xx

in reply to Ivf3rdround

Sorry to hear you went through that it must have been so hard.

Yes you're right it will be so worth it in the end just have to try not to lose hope .

I'm hoping maybe I'll hear something tomorrow but if not will ring them friday and chase it up xx

Ivf3rdround profile image
Ivf3rdround in reply to

Yeah we saw heartbeat at 7+6 then I had a weird feeling somthing wrong when I was 9 weeks and private scan confirmed heart stopped I was 9+2 was awful that was in June, then had a chemical end of September but that was no where near as bad thankfully, but have to stay strong to keep going 😊.....Yeah definitely chase them haha I'd annoy the hell out of them 😂😂😂 xx

in reply to Ivf3rdround

That must have been awful Hun and so unfair .

The new year is a fresh start and hopefully will bring you the happiness you deserve.

Haha I'm not really good at that sort of thing I usually get all tongue tied on the phone but luckily my partner is quite Persistent xx

Ivf3rdround profile image
Ivf3rdround in reply to

Yeah was worse as my best friend is due exact same day as I was! her bump is so big now find that hard.....yes fresh start new year....I'm rubbish on phone but I have a go if I have to lol! husband much better ha, and thank you! hope we both get our dream next year xx

Katrina13 profile image
Katrina13 in reply to

Ask to get on the cancellation list, as theatre slots can come available at times like Christmas, as people cancel their scheduled ops. It might help!

Ivf3rdround profile image
Ivf3rdround

Oh and I think you can have another done close together I've heard of someone having 2 in a week! as long as it's safe, if it came to it maybe private would be quicker xx

Katrina13 profile image
Katrina13

Wow - your situation is SO similar to mine. My story:

1. HSG found tubes blocked

2. Follow up laparoscopy confirmed endo, scarring and blocked tubes

3. Open surgery to clean up and repair (open) tubes

4. Tried naturally for 6 months without success

5. IVF: failed, and consultant expressed concerns at seeing (ultrasound) fluid build up in my tubes during the procedure (they had closed back up)

6. Surgery to completely remove both tubes

7. Frozen Embryo Transfer

8. Baby!!! Now almost 16 months old, the most beautiful, wonderful little girl in the world

So - I TOTALLY understand what you are going through. Its very, very hard to even consider removal of tubes when all that you desperately want is to get pregnant. For me, emotionally this was the toughest part, especially when the admission forms said 'sterilisation' - I cried for hours about this. However, when I woke up from that op, and saw the pictures that my surgeon had taken of these horrid deformed tubes which were now gone, I felt an overwhelming surge of relief, like I was clean and ready to go!!! The FET started the next month and was a success.

For me, having the tubes out was absolutely the right thing to do. Of course I now know there is no chance I will fall pregnant naturally, and to be honest this in itself feels like a weight off my shoulders as I am past the whole 'period is a bit late am I pregnant?' monthly stress. This of course is easier though as I have my one baby now.

So, stick with it, keep hope, and if they want to remove your tube trust that this is actually the best way to get IVF to work: stay positive about it as much as you can although it is incredibly hard.

I wish you all the luck in the world xxx

in reply to Katrina13

Thank you so much for your advice, it is so nice to hear you had success and got your baby in the end. Fills me with hope :)

The IVF consultant first of all said If it is hydrosalpinx i would need it removed or clipped preferably removed but when I got upset he then said I don't have to and could give the first IVF a go and then if it doesn't work have it removed before the second go. I really don't know what to do.

Still waiting for someone to get back to me about it as I still don't know if this is all a mistake :( xxx

Katrina13 profile image
Katrina13 in reply to

Personally, I would have it removed. I understand (having done it) how hard this is both to hear and to do, but it gives you a clean slate to have the best chance of IVF working, rather than hanging on to a tube that is doing you no good anyway. This was definitely the right decision for me, but of course you have to do what you feel is right for you.

xx

leah30 profile image
leah30

If your going private go and and get a second opinion from another private clinic if you can x best of luck x

Hi ladies just thought I'd give an update as got some good news for a change, we are able to still go ahead with IVF in Jan and they are going to keep an eye on my tube. If it swells then they will try to get me to egg collection first and then freeze the embryos before removing the tube so at least we won't have wasted our go.

Hope you are all well xx

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