Hydrosalpinx and ivf after

[FlapJackered]

I have just been diagnosed with a hydrosalpinx on one tube (they are about 80% sure that's what it is but won't know until they operate). My FET has been cancelled mid cycle because of it. 😢
The clinic has told me I need to get it removed before I can do another cycle but I forgot to ask how long after having it remove can you have ivf again?

Has anyone been through this before an ivf cycle, also were you successful?

I am feeling quite sad about it all as it just feels like everything is going wrong that could go wrong this year.

Thanks for any advice.

I had to have both tubes removed due to ectopics so the same surgery really - the second time I lost the tube in the July and then had one period (which was a slightly longer cycle) and did another egg collection in the September

Hello, I had two very early losses and upon investigation a hydrosalpinx was discovered. I had a lap to remove it along with part of that tube end of January and had a fresh cycle in June. I’m just over 6 weeks now and fretting about a scan tomorrow to see how it’s going.

@FlapJackered the hydrosalpinx may be causing your infertility or even if you are managing to get pregnant, it can flush away embryos, so they encouraging removing it before treatment. If it’s only one side you may be able to keep your other tube.

Thanks @shrugitoffonemoretime that's really reassuring. I hope I can get the surgery ASAP.

@birdbybird sorry to hear about your losses. So heartbreaking. I had a miscarriage at 12 weeks in April, so I am not sure if this could have caused that or not. I just want to get the surgery done and move on.
Congratulations on your bfp though! I hope your scan goes well tomorrow. 🤞

@FlapJackered you might not have to wait as long as I did. I waited a few months as hadn’t decided on ivf at the time of the operation.

@FlapJackered I’m sorry to hear about this. I’m in exactly the same position as you right now. I just found out this morning that my FET has been cancelled too for exactly the same reason, I’m also mid cycle.

I have a suspected hydrosalpinx on my left tube which was flagged up on my endometrial scan at Ultrasound Direct yesterday. Our clinic is in Prague.

I had an early loss at about 5/6 weeks in May from my last FET and I’m wondering now if it was due to this, as it showed up on that endometrial scan too, but that transfer went ahead as planned.

I’m planning to look for somewhere I can have it removed privately, hopefully sooner rather than later, as due to my age, time is not on our side!

I just wanted to empathise and hope that we can both get this sorted out and move on.

If anyone can recommend anywhere to have the procedure done, I’d be so grateful.

@KLM25 sorry to hear you're in the same position. It's so disheartening and frustrating isn't it.
Very sorry about your loss too.

I have found someone in Bristol which is near where I live and have a consultation later in the month. You just wish you could fast forward time!

@FlapJackered Thankyou so much. Yes it really is tough - you think you’ve crossed one hurdle and then another one appears!
I’m so pleased that you’ve found someone and you’ve got a consultation this month. At least that will get the ball rolling soon.
Wishing you all the very best.

I had a right hydrosalapinx removed before I was allowed to go ahead with IVF when I did have IVF it was a successful first round attempt and when DD was 18 months old I had a spontaneous conception that resulted in DS despite only one remaining tubes and the 5 years TTC prior to IVF never resulting in even a sniff of a BFP.

Hello,

Another left sided hydrosalpinx here! Mines caused by endo. No advise unfortunately but I'm also hoping to conceive soon after mine is removed X

Hi All,

I have just had my FET cancelled as my doc found hydrosalpinx on my left side during EC. I had a 3D Ultrasound that with difficulty confirmed a small but present bump in left tube - 20 mm x 16 mm x 13 mm). Right tube is unblocked, ovaries are good and no sign of any endometriosis

This is my 2nd cycle and I’m absolutely gutted and overwhelmed….. though I fully support her decision given the risks.

We’ve just had to agree to freezing our 5 (precious) embryos whilst we figure out next steps (freezing on Day 3).

My doc has advised that I wait for my next period and see whether it goes away. Apparently that’s a thing! - several scans including HSG & EC by clinic and NHS have not shown fluid before.

based on results, she may recommend a laparoscopy…

Just wondered if anyone else had pushed for clipping/ removing the tubes, rather than the doc?

She said I can do this either on nhs or privately. Has anyone done it on the NHS? Would like to understand whether they treat this as urgent, conscious age is our worst enemy!

I do have Bupa insurance (full cober) but it states it doesn’t include fertility. I assume this is counts as fertility treatment?!

Please can you also confirm what the actual laparoscopy is like? Is there any risks like reducing egg count that I should consider?

For context I’m 35, been trying to conceive for approx 5 years… husbands sperm is decent. 1st IVF cycle failed - no known cause. 2nd cycle, I’ve done further immune testing and reduced my NK cells. Had a faint pregnancy test in the past but not 100% on whether we’ve had ectopic pregnancies….

wishing you all the very best xxx

I’ve just found out I have fluid in my left tube whilst starting initial IVF investigations - I’m so upset just panicking I won’t ever have a baby even with IVF 😭 I’m just wondering what surgery you had to remove it and if you ended up going private? I’m struggling to find anywhere online or approx prices. Any help much appreciated 🙏🏻 hope your op went well xx

Hi Sophjadeskade,
I’m with you… I was told the exact same last week.

Having had a few more days to process it, I actually feel a bit better. Now I have an actual reason why pregnancy/ IVF hasn’t worked and I can take control of it. it is treatable…

Obv everyone is different so here’s what I’ve been told - hope it helps.

so I’ve had ivf once privately, this including going through HSGs etc to check my tubes were clear, everything seemed normal but I got a BFN. Literally no explanation. I entered my 2nd cycle and during egg collection (same Dr) found fluid in my left tube.

she explained that fluid in the tube tends to be full of harsh chemicals that would harm embryos so regardless of where it is in the tube, it is likely to leak into the womb. studies show it reduces implantation and keeping pregnancy by ~50% though for some there is no impact.
Therefore she didn’t recommend ET until it went away.
it could be intermittent - I could wait till my next cycle, do a 3D ultrascan and see if it’s gone away. If it has, let’s proceed.

alternatively, I could tie or remove my left tube. This completely eliminates the risk of any fluid building again and harming baby. I’d still have my right tube so whilst natural conception reduces, ivf chances improve.

laparoscopy is a common gynaecology procedure - scary thought for you or I but to the docs it’s key hold surgery. You’d be sedated, they would cut into your abdomen, put a camera down, assess and do what is required. You should be home on the same day. There are risks with all ops but they seemed low… personally I think this is the route I’m heading to- I want to ensure I have the best chance within next few years.

the good news is that there are treatment possibilities both on NHS (if in Uk!) and privately. I’d recommend you start by getting your fertility doc to write you a gynaecology referral.

cost wise, I’m not going to be much help. I’ve tried to go through my insurance. Gynaecology is covered, though fertility is not.

I had seen online that there were hospitals doing interest only offers, etc. if I see anything I will post :)

but if you are in the UK, get yourself on the NHS list regardless. Can always cancel after.

note, try and avoid draining… I’ve been told this is not effective. It can lead to serious infection and is likely to cause more fluid to build going forward.

hope this helps and reassures

stay strong, we will get there x

Hi CurlySue7,

thank you very much for all the information it’s much appreciated 🙏🏻 Sorry to hear about your struggles too.

we have been going through fertility tests with the NHS too since my husbands spent results weren’t great either - we thought this was our only issue and had gone private to see if we needed treatment but this popped up on my internal scan. Awaiting a call back from the consultant on next steps but assuming removal might be the only option.

Also had an early misscarriage which I’m now thinking this is the reason.. it’s just all so draining and difficult.

I have an app with my GP in a week so will discuss with them also but it’s the wait times. Not sure I can stomach much longer but it’s worth being put on the list like you say.

if I get any update I will also post.

Thanks again & good luck 🤍🙏🏻 xx

the wait is awful…. I just take comfort in at least now there’s some form of explanation!

I’ve not heard from anyone that’s had the op and not fell pregnant… 🙏🙏

@CurlySue7 @Sophjadeskade

Hello - I hope this can help either/both of you in some way!

I too was diagnosed with a left sided hydrosalpinx - mine was after an mri. I was having tests for endometriosis.
I waited almost a year for the laparoscopy to remove my tube and had the year from HELL panicking. I have never ever felt so low, I completely hit rock bottom and I'm only now trying to somewhat recover from it. To me that diagnosis was like I was handed a death sentence (fertility wise and mentally). So I 100% know exactly how you are both feeling.

After I had my surgery they discovered I didn't have a hydrosalpinx - the tube is blocked but it wasn't hydrosalpinx. I still have both tubes. Apparently the amount of times the scan suggests this and it's untrue is unreal - my surgeon said that it is a standing joke between gynos about how often the scans are wrong... however the only way to know for sure is by having a laparoscopy. The suspected hydrosalpinx was actually an ovarian cyst which was removed during my laparoscopy. This is what was suspected as fluid.

Have either of you had laparoscopies in the past? Out of curiosity - have you been given any diagnosis as to why you are struggling to conceive?
How old are you both? (Sorry if I've missed that)

I've now had the laparoscopy to which I had adhesions removed that apparently would have completely prevented pregnancy at all. Yes one tube is blocked but the other is open and healthy. My surgeon is optimistic that I will be able to conceive naturally however I only had the surgery 3 months ago and I'm not pregnant yet. I am still struggling to come to terms with having one blocked tube but I'm trying very hard to trust what my surgeon has said.

I hope this can help both of you in some way - I would really encourage you to have the laparoscopy as they can show other contributing factors as to why you may be struggling to conceive. Recovery isn't too bad either - it took me 1-2 weeks to feel normal again.

Please feel free to message me if either of you want to talk xx

Thank you for your post - sorry to hear about your struggles. It really is life altering isn’t it, never been so down in my entire life. Just seems one thing after another but everyone around me is pregnant a couple of months into trying 😢

I just turned 33, on my end all my tests have been normal, no symptoms of any endo at all or of anything else for that matter. My cycles run like clockwork and I’ve confirmed ovulation pretty much every month.

We did some tests on the NHS after a misscarriage and found my husbands sperm results weren’t great. Not awful but not good either. Since we haven’t conceived after this we decided to go private to start the IVF process, all seemed fine until the last couple of minutes of the internal scan when the lady said she could see fluid in or around my left tube and would flag this to the consultant.

So now it’s all a waiting game, which for me is the hardest part. Did you have your lap done on the NHS? I really don’t think I could cope waiting a year for it. But no never had one before. Just so worried about spiralling costs of it it before even thinking about paying for IVF.

Just want it all over with and my life back!

Thanks again good luck with TTC hopefully you might be lucky now 🤞🏻🤞🏻 xx

@Sophjadeskade

I could have literally said everything you've said! I have had to completely remove friends out of my life who have got pregnant as I can't cope, I can't even cope with bloody celebrity announcements! It's ridiculous.

If I had known I'd be waiting almost a year I'd have gone private too. But I also know somebody who has had their surgery through and done within 3 months! Yes I did have it on the nhs, they were great but the wait was torture as I just kept spiralling.

Have you had scans prior to this one?

I really hope you get positive news soon. If it is hydrosalpinx - I have spoken to quite a few others who have then conceived via ivf after having it removed. Just another wait unfortunately 😩 Best of luck xxx

Thanks for sharing… sounds awful, that they can/ do get it wrong! but fertility seems to be so “unknown”

I’m 35 - everything seemed to be normal, though my egg count was on the lower end of the scale. My husbands sperm is also showing no signs… we had 1 failed ivf cycle (aug 22) and then got up to up egg collection for another cycle (feb 23).

I’ve had HSGs, loads scans, etc and nothing abnormal showed. This cycle I did have a large cyst which we drained… however during Egg collection my doc noticed a very small amount of fluid in left tube. She advised not to proceed with the transfer just yet as it reduces chances. I had to very reluctantly agree to my 5 precious embryos being frozen 😞

I had another scan the following day and it showed as still being present! I’ve now gone through my insurance to see if a gyn will remove it….

went to the initial consultation last night. They have agreed to do a scan so waiting to hear back on further dates. I assume scans can be done throughout the cycle

fingers crossed for you x

Hi @TheArtfulScreamer1 just a quick question if you don’t mind - how long do they advise you wait after the removal to start a new IVF cycle? Just trying to work out how long this is all going to take 😪
thank you!! So glad IVF worked first time for you too!

Hi,
im a surrogate for a family member. I’m still going ahead with FET despite having Hydrosalpinx as I’m not going to get myself sterilised. Apparently the fluid may leak into abdo cavity or uterine. Fingers crossed it works x Good luck

I guess I have some decent news… though confused!

I’ve had my scan results back. There still seems to be fluid in my left tube but my right side also doesn’t look 100%. Could be a corpus luteum cyst… I’m having a lap… I’ve decided that I’ll just trust that my experienced dr knows what’s best…

both tubes would be a massive blow as I’ve mentally prepared myself for one tube only going ):

that being said…. Will I feel less of a women with no children but my tubes vs. as a mum with no tubes. After 6 years of trying I’d give up anything x

hope everyone is making some sort of progress!

Hi guys, so hard and confusing especially when they can’t tell you for sure what’s going on until surgery! Hoping all goes ok for you - and I agree I would rather have no tubes in the worst case but have the chance at a child 🙏🏻 I’ve seen a lot of success stories too.

my update wasn’t expected whatsoever and I’m still processing to be honest - the day after my ultrasound with the suspected hydrosalpinx I actually found out I’m pregnant! I am only 6 weeks and going for an early scan this week but seems good so far. My consultant said whatever they saw was only very small and hopefully all will be fine but also similar to you said it could have been the corpus Luteum which sticks around if you’re pregnant. Very early days so anything could happen but praying for a miracle 🤞🏻🙏🏻🙏🏻🙏🏻

good luck with everything!! 🤍 xxx

Awwww I’m so happy for you! Keep doing what you’re doing and try not to worry.

best of luck with the scan x

Hi there I have come across this thread and I wasn't sure if this would relate to me. I had my day 10 scan and they said there was a tiny bit of water on my womb lining and that it's how my body has responded to the medication. They said 9/10 it goes before transfer but if not I have to do a frozen one next month.

Is this the same as what you are discussing the above? It's really thrown me and sent me in to a panic as I'm already 40. I've read progesterone tends to cause the fluid to be reabsorbed in time for ET but as said I am a bit confused because I have also read it can be linked to tubes and low implantation rate.

Trying to stay positive as the stims have made me quite anxious already.