Removal of tubes...am i being silly?!

[LiLi19]

Morning everyone!

Firstly congrats to all the ladies & gents celebrating recent BFP's...massive hugs to all those still waiting for theirs, still waiting to start or still recovering from unsuccessful attempts or recent losses xx

Sorry for long post but need some advice....I've been diagnosed with bilateral hydrosalpinx and advised at least one is 'terminal'

Removal of both tubes has been recommended to help IVF success and surgery scheduled...however, I'm convinced i had a chemical pregnancy back in January 2015 (i was on the pill at the time but had had the noro virus at the start of the month... but looking back was incredibly tired, felt sick some mornings but put it down to the stressful job i hated at the time)

When I came off the pill for my break (which i ran back to back with another pack over xmas and my birthday) i had incredible period pains, a very heavy flow and clots, which I've never experienced before. I went to the doctors and she put it down to an 'abnormal period' and heavy flow and gave me drugs in case it happened next time..therefore its' never been confirmed or documented.

It was only when i went for my pill check a couple of months later that the nurse confirmed it sounded like a chemical pregnancy.

If it can happen once, can it not happen again naturally?!

I'm haunted by what ifs because of it and wished I'd realised and tested...I know it may have ended in the same result at OH has poor semen analysis results and abnormailities but if it hadn't...(baby would be 2 this September it hadn't...)

Sorry to rant, just need some objective opinions on whether removing my tubes (and therefore the chance of EVER having a natural pregnancy) is too hasty IF i have conceived naturally before??

xx

[DianeArnold Partner Nurse Fertility Network UK]

Hi LiLi19. So sorry to hear that you have been diagnosed with this condition. It could be that you managed a pregnancy through the one tube,but for the following explanation it did not progress.this is always such an awful decision making time, when someone suffers with hydrosalpinx. Unfortunately, as in your case it does often affect both tubes. I’m sure you are fully aware of this condition, but just in case I’m going to go through my explanation of it, and hopefully it will help you to come to a decision. The condition called “hydrosalpinx”, which when translated, simply means water in the tube! Fallopian tubes have a natural lubrication in them to allow sperm to swim and the egg to travel down. Occasionally, the end of the tube(s) called “fimbriae” stick together. This then blocks the “exit” for excess fluid to escape. There is then only one way out for this fluid and that is through the womb end of the tube. Many consultants now believe that this excess of fluid can prevent implantation of a developing embryo, as it can be “washed” out. Because of this the tubes are often dealt with by "clipping" or removal. I hope that helps to explain your position at the moment, and hope that what ever decision is made, will be the right one for you, and end with success. Diane

[LiLi19 in reply to DianeArnold]

Thank you Diane xx

[Pookymama]

Hi Lili,

Sorry to hear you've been diagnosed with this condition. It must be a frustrating and worrying halt to proceedings for you and of course brings up so many "what ifs?".

I may be in a similar position to you buy am yet to be diagnosed.

After down regging for 2 weeks, I went in for my baseline scan on Monday expecting to start stimming, but the scan picked up a mass of fluid on the left side.

The Doctor then came to confirm that she was concerned it could be my tube swollen with fluid which could affect my ivf chances so she recommended I have a laperoscopy to investigate this which may result in potential tube removal prior to ivf continuing.

So, I've now been referred back to the local hospital on a waiting list for a lap which will delay things for a few months... bit annoyed as I asked for a lap at that hospital 2 years ago when the blocked tube was discovered with unidentified cause but they refused, bypassed this test and sent me straight for ivf.

I've now had 1 ivf that resulted in miscarriage, a second thst was cancelled due to a delay in the hospital and a third now cancelled due to this fluid which apparently the doctor saw on the scan which cancelled ivf 2 but regretted to mention.

I can't help thinking that if they'd done the lap 2 years ago, our precious time, eggs, and the nhs time and money could have been saved instead of wasted and we could have been pregnant or parents now.

I was put on clomid 2 years ago which resulted in incredibly (projectile vomit, doubled over) painful, clotty periods which having since had one felt like a miscarriage... I too wonder if it was due to the presence of this fluid which could have been avoided then...

Sorry for the rant Lili, what I mean is that I totally understand where you're coming from, it is all so frustrating and concerning isn't it!

Good luck to you with whatever you decide lovely, and may we have a clear path going forward xx

[LiLi19 in reply to Pookymama]

Thank you for your reply and so sorry to hear of your situation - how utterly frustrating!!

It's a horrible decision to have to make, and really is in the hands of the doctors expertise and decisions...but there's still a bit of me that refuses to loose the hope that I'll defy the diagnosis and will fall pregnant naturally...!

Good luck to you, i hope they make a quick decision for you xx

[Pookymama in reply to LiLi19]

I know what you mean about hope in falling pregnant naturally, I fully understand. It's such a massive decision to make.

A lot of women go on to have healthy pregnancy after tube removal though don't they, if tube problems were preventing pregnancy in the first place?

Have ttc for 4 years without luck, I personally am ok with them removing my tube if it'd the reason I can't conceive but it is a very personal decision and we do need to pay attention to our instincts as well.

It's funny but when my last round was cancelled I was told it would be a few months before I'd start ivf again, then was told I could go again straight away.

My instinct told me a 3 month break would do my body and mind good but I didn't listen to it and now it turns out I'm having a 3 month break anyway so it's funny how things turn out!

I guess ultimately only you know what you feel is best for you and your thoughts on that might change given a little time to process things. This is your body and a major deal, so don't feel you have to rush your decision.

I hope it all works out for you, whatever you decide. Xx

[LiLi19 in reply to Pookymama]

Thank you...that's very good advise!

I have a 3 month wait too until the operation...lets hope 3 is a lucky number for us both

xx

[Pookymama in reply to LiLi19]

I sure hope so Lili. You know what? I have a Really good feeling that everything is going to work out for us so maybe 3rd time lucky is just it!

I look forward to seeing how it goes for you.

Did you just have a laperoscopy and you have a further 3 month wait for the op then?

Now you say it, I guess it'll be a 3 month wait for the lap then a further 3 month wait for the op. Meh! And there was me thinking that 3 was the magic number! Tehe 😅.

Whatever the case, hopefully this will be our time. Xx 😊

[LiLi19 in reply to Pookymama]

I love this...me too!

Well i had a lap and dye in October, then we had the formal referral for ivf when I was told I'd likely need the Op but that this would all be done as part of the process for my IVF.

Then the funding was rejected, then approved after appeal so its all just been a bit delayed. So Op in July will be to fully assess and remove tubes at same time if they're as bad as they think!

Everything crossed for us both!!!!!! xx

[Pookymama in reply to LiLi19]

Gosh, you've had a process ans a half! Glad they gave you funding in the end! Xx

[LiLi19 in reply to Pookymama]

Thank you! Can't quite believe it to be honest but very happy! xx

[Gueritarubia in reply to Pookymama]

When I was still going to have a lap (postpone/cancelled until further notice), the consultant said he'd go in with a laparoscopy and would remove the tubes if needed, all in one go. Then three months recovery. Why would you have two providers?

[Gueritarubia in reply to Gueritarubia]

Bloody auto correct! That last word should read "procedures". Sorry!

[LiLi19 in reply to Gueritarubia]

I think initially they wanted to see what was going on but because I've had surgery before, it will be a more complex op to remove the tubes...they originally said they wouldn't do it as it would all be taken care of during the ivf process which is a bit annoying as if they'd done it when they did the dye test, I could be starting the ivf soon xx

[Gueritarubia in reply to LiLi19]

For IVF you obviously don't need the tubes, but then they don't want any liquid from the tubes washing the embryo out, or the toxicity of the liquid causing it problems... But as my consultant said, blocked tubes might not empty out - hence him looking for liquid in the uterus...

[Gueritarubia]

Hello,

Sorry to hear about your hydrosaplinxes! I had clear tubes confirmed by X-ray back in June, but then they got filled up and discovered in January - without infection having happened!

I got lined up for IVF, egg retrieval only to preserve eggs due to my "advanced age", to then have the lap to remove them in one go and have a frozen embie put back three months after the lap (recovery period).

But then, by the time they got the eggs the tubes were clear and my uterus dry, so they didn't see a problem continuing...

Sadly things didn't work out for other reasons. Just had my start up scan for round two and tubes are still clear!

My consultant seemed to attach a lot of value to the fact my uterus didn't show liquid inside, so you might want to confirm that?

Good luck whichever way it goes!

[LiLi19 in reply to Gueritarubia]

Thank you so much for your reply, that's something I hadn't even considered so will definitely ask them

I sometime get a lot of watery discharge (sorry tmi!!!!) but they can confirm if that fluid from the tubes or natural for my cycle or both...!!

Fantastic news that your tubes are clear prior to round 2...I have everything crossed for you xx

[Gueritarubia in reply to LiLi19]

Thanks @LiLi19!

The consultant I spoke to was also the one that would've done the laparoscopy. He said he'd still be happy to do it if I preferred, but as the uterus was dry and the hydrosalpinxes had gone down, he said he would probably advise to go the "normal route" (which in my case is still IVF) first. Only if there would be multiple miscarriages and evidence of the tubes filling up or the uterus receiving moisture, only then he would advise to get them out. As he said, it remains a surgery with full anaesthetic and the usual risks, plus a recovery period of three months before you can think of trying to get pregnant, so if you can do without...

[LiLi19 in reply to Gueritarubia]

That's great, thank you so much for all that info.

I really would prefer not to hold things up and mnore than they already have been if at all possible so I will definitely speak with them about this...thank you again! xx

[Pookymama in reply to Gueritarubia]

Gosh, I didn't even think about the recovery period after tube removal surgery-seems I'll be 35 by the time we're in for ivf again and I'm not quite 34 yet with diminished ovarian reserve!

I had a large amount of fluid on my uterus both visible on scan this week and at the end of ivf round 2 last month which may or may not be related to the tube which like you is blocked without infection, and until the lap will be without explanation.

This fluid wasn't there/mentioned before but the blockage was so not sure if it'll clear on its own too...

Glad your tubes are clear now. Best of luck going forward hun. Xx 😊

[Gueritarubia in reply to Pookymama]

My consultant said they like to wait three months after the lap to let the body heal properly, though I have read of people trying IVF and getting pregnant much sooner after.

Could you ask for your eggs to be taken and fertilised before the lap, and then do FET after? That's what they had planned for me (I'm 37), to safeguard the eggs as young as possible...

Good luck with it all! Xx

[baby2016]

Hello 😊 I have had both tubes removed due to this. They do say if it's found in one tube it will normally mirror in the other too. My right one was picked up on a scan after I was admitted to hospital in severe pain. If it can be seen on a scan then it's big as normally Fallopian tubes would not be picked up on a normal scan. A month later I went for the NK test and it was also then diagnosed on my left! By this point I'd had 1 chemical, 2 ectopics and 1 missed miscarriage at just under 10wks. I was told the chance of ectopic again was very high as I'd had one in both tubes and maybe this is what caused the hydrosalpinx. By this point I was in dispair, I was 37 and so desperate for a baby. I was referred for ivf and told both tubes would need to be removed before I progressed. Due to my age I agreed, had them removed last March and had my first ivf cycle started in the May. I thought all my problem had been identified and felt ok having them removed as knew so could get pregnant just had issues with keeping it. 2 ivf cycles later including 1 frozen cycle which had resulted in 2 chemicals and 1 BFN. I'm now 39. There have been times when I've questioned why did I bother having them removed as I could get pregnant naturally but try not to dwell on that as when they operated they found a large 5cm plus cyst actually growing off my right tube. I was in pain daily with it but never knew that's what it was and from the moment of coming round knew the pain had gone. In America they recommend all women who have had their families to have their tubes removed as they now believe damaged tubes is the first stage of developing cancer in this area, so for that reason I'm glad I had it done. It just makes me sad that without 'science' I will never get pregnant naturally again. Have you had your amh levels done? Personally with your age and if your amh was good I would probably leave it a few years, however it's a hard decision to make, and there is a risk that the fluid can cause miscarriage if you do get pregnant because it can apparently flush the embryo out 😢 If you have any questions re the procedure or anything then please feel free to pm me xx

[LiLi19 in reply to baby2016]

Thank you so much for your reply!

I too was diagnosed with the hydrosalpinx after a scan following severe pain which turned out to be a large perforated cyst.

I really don't know what to do...the thought upsets me but I dont want anything to risk the ivf

Xx

[baby2016 in reply to LiLi19]

I know, it's a horrible decision. If your going for ivf then sadly they will have to be removed. Just keep trying naturally in the meantime and see what happens, but once mine were diagnosed (3 months after my second ectopic) I then never naturally conceived again. They can come and go. Do research in your area for reflexologist that specialise in fertility. I started seeing one 2 weeks after my tubes were removed but in hindsight wish I'd done this from the moment I was diagnosed with the hydrosalpinx, as apparently reflexology can help, but only became aware of it whilst doing ivf research xx