Hydrosalpinx (an update on me included!)

[MissJuly10]

Hi all.

I've not been on for so long! I meant to update when I had my chat and plan for this cycle. We had planned to start April/May depending on my period but since our last cycle (last year!) my periods have been quite regular, it's been a massive improvement. Anyway, my period came at the end of April so we went in on Tuesday for our baseline scan. I'd had some pains on my left side which were kind of minor but I wanted to check that everything was OK on that side as every time I felt like I ovulate, I'm in a lot of pain and my belly feels very swollen and sensitive, it even hurts to sit down. They found that my left Fallopian tube had fluid in it. The nurse was surprised as its not happened before and they're not sure how it's become blocked but it had and then had a buildup of fluid which they explained is toxic for an embryo and would cause it to be flushed out so they would need to resolve it by either clipping the tube or removing it.

They wanted us to continue with Gonal F and Cetrotide and come back in for another scan to confirm and for my consultant to see the images. Our options at the time were:
1. To go ahead and ignore it and accept the lower percentage of success
2. Clip the tube and continue
3. Go ahead to egg collection, freeze the embryos instead of a fresh cycle and in the meantime, have the tube removed and then come back for the transfer.

We left that appointment in a state of shock, it was completely unexpected and I was devastated at the thought of removing a tube. We decided to wait for the consultant and find out what he thought was best.

We went back today and my consultant came in to scan me.

Unfortunately he found "a significant amount of fluid" in my left tube and his personal opinion was that we should abandon the cycle, stop all medication and refer me to my GP to get sent to a gynaecologist to remove the left tube. As our clinic is unfortunately closing, we will not be able to return to continue the treatment at the clinic which was quite upsetting as I've had all of our treatment there and it was devastating to walk out for the last time today and say goodbye to the nurses after receiving such shocking news about the left tube.

I'm a bit lost as to what happens next, the removal procedure, how it will affect our IVF cycles etc.... I just feel like I'm drifting at sea at the moment just in shock and feeling pretty crap.

 

[millielaura]

I'm so sorry that must of been such stressful and horrid news when you were expecting to be able to start.
I had a suspected hydro, but when it came to looking at it during a laparoscopy there wasn't fluid but it was blocked beyond repair. Due to a past cyst removal I don't have a functioning left ovary anyway so they chose to just leave it in so I just have the one functioning ovary and tube. If they do remove the tube then from what I've heard the one tube you have left can jump across and catch eggs from the opposite ovary too..but I'm guessing this wouldn't matter with ivf anyway. Getting the tube removed will massively increase the chances of ivf working I would think, there may of been a small amount of fluid in all this time hindering implantation? Think they will do it by laparoscopy for the removal so the camera through where belly button is then a couple cuts a little lower. I've had two and found the recovery okay with the pain easing totally within a couple weeks (the first one I had bigger cuts from the cyst removal).
It sucks you can't go back to the same clinic is there another nearby? Xxx

 

[FBTTN8079]

Hey hon I'm so sorry your having to go through all of this you've already been through so much & that the clinic is closing too that's terrible
I know it may not help but have you ever considered treatment abroad? For us serum in Athens have been totally amazing & I know they have been for so many others. Peny now does some consulatations with a satellite clinic in London if you would ever think of something like that? She just seems to find and give hope when you aren't sure if you have any left xxx

 

[MissJuly10]

Thanks ladies.

Millielaura - yeah it was quite a shock. I've had pain on my left side for a while though I just put it down to super strong ovulation. The nurses don't think it's caused any previous failed cycles because they've not spotted it before and yesterday there was a lot of fluid so not something they could miss. Did you have to wait long for your lap? As I've got to be sent back to the GP then referred from there.. So no idea how long I'll be waiting.

 

[MissJuly10]

Going to reply later on my iPad, bloody tapatalk is only posting half my replies!

 

[Emily0505]

Sorry you've not had good news hun.

Must be such a disappointment for you.



XX

 

[MissJuly10]

There's two clinics really about the same sort of distance as what this one was so it's not too bad. We should get our letters next week so we can go from there. I'm hoping the referral for the lap doesn't take long. ��

 

[MissJuly10]

Hey hon I'm so sorry your having to go through all of this you've already been through so much & that the clinic is closing too that's terrible
I know it may not help but have you ever considered treatment abroad? For us serum in Athens have been totally amazing & I know they have been for so many others. Peny now does some consulatations with a satellite clinic in London if you would ever think of something like that? She just seems to find and give hope when you aren't sure if you have any left xxx

Thank you. I've thought about it but don't think DH would be keen to go abroad, we've been through so many cycles that I'm not sure what we would do when we get to the end of the nhs funding. But we are of course hoping that won't be necessary once we deal with the hydrosaplinx.

X

 

[MissJuly10]

Sorry you've not had good news hun.

Must be such a disappointment for you.



XX

Thank you.x

 

[laurat]

Sorry to hear this MissJ! Hope things improve for you soon!

 

[Eryinera]

Hello. Sorry to hear about your hydrosalpinx. I just wanted to let you know I had one a few years back. Unfortunately for me they found it when I was 7 weeks pregnant and the tube did empty itself and caused my first miscarriage. So in a way finding out before you get pregnant could be a blessing in disguise as other than that my baby was fine and healthy. It's not and great thing to go through finding an issue like that and my heart goes out to you. The light at the end of the tunnel is that after quite a journey im not 2 days away from my due date, and there was and other lady on here who also had a hydrosalpinx and once hers cleared up she eventually had ivf and now is the proud mummy of twins x
I hope you get through this and get to be another success after hydrosalpinx story x x (they never did find out the cause for mine either but they double checked my tubes a lot more throughout each subsequent pregnancy)

 

[MissJuly10]

Sorry to hear this MissJ! Hope things improve for you soon!

Thank you hun x

 

[MissJuly10]

Hello. Sorry to hear about your hydrosalpinx. I just wanted to let you know I had one a few years back. Unfortunately for me they found it when I was 7 weeks pregnant and the tube did empty itself and caused my first miscarriage. So in a way finding out before you get pregnant could be a blessing in disguise as other than that my baby was fine and healthy. It's not and great thing to go through finding an issue like that and my heart goes out to you. The light at the end of the tunnel is that after quite a journey im not 2 days away from my due date, and there was and other lady on here who also had a hydrosalpinx and once hers cleared up she eventually had ivf and now is the proud mummy of twins x
I hope you get through this and get to be another success after hydrosalpinx story x x (they never did find out the cause for mine either but they double checked my tubes a lot more throughout each subsequent pregnancy)

Thank you. They did say once it's dealt with, our chance of success increases a lot as there'll obviously be no toxic fluid flushing any embryo out. So I'm trying to focus on that. But it's crazy how it feels like I'm losing a part of me. Which I guess I am really but it's more than that since obviously we are ttc and have been for so long. Just want to get it over with so we can get back to cycling. Hoping for our letters this week.

Thank you for sharing your story. Congratulations on your pregnancy, hopefully I'll be another success story. X

 

[Jasmine111]

Exactly the same thing happened to me, I had fluid in both my tubes and they wouldn't let me continue with ivf until they were either clipped or removed. So i ended up having them both clipped via keyhole surgery and got pregnant on next go of ivf. If you have any questions let me know xx

 

[phonixgirl]

Hello lovely. It's nice to see you - I always think about you! I don't come on here very much now either.

I'm sorry to hear this but maybe it could provide some answers? Personally I would go with it and have it done - you do still have the other one, after all.

Let us know what you decide xx

 

[Claire36]

Hi,
I also have a Hydrosalpinx but they are not happy to clip or remove due to previous surgery so we are going ahead with the IVF. I may have the fluid drained at egg collection due to the risk of it draining and damaging the embryo. Its all such a worry but I am keeping positive that they can sort this problem for me.

I completely understand why you are feeling so rubbish, feels like one thing just leads to another!

Sending positive thoughts x