Hydrosalpinx? Anyone any advise?

sharoninsomerset · Post by **sharoninsomerset** » Wed Jun 25, 2003 5:06 pm

Hi, I've just been for my EC (2nd round ivf - tubal damage) and they have just found that I have hydrosalpinx. From what I've just read it reduces my chances of the embryos implanting because the fluid in the tubes can be toxic. They want to put back 3 embryos to give me extra chance (only collected 3 eggs, so hopefully all 3 fertilise). Just feel cheated really, that these 2 goes at IVF have been a waste and it should have been picked up on earlier. If this doesn't work I think I'll need the tubes removed before we can give it another go. Anyone any experiences? Love to hear from you Sharon

Traci · Post by **Traci** » Wed Jun 25, 2003 6:06 pm

I havent heard of that but I am crossing everything for you on ET, I will light my lucky candel for you Trace x

Alison · Post by **Alison** » Wed Jun 25, 2003 7:39 pm

Hi Sharon - don't give up on this cycle yet, it could still work for you. I think its all about percentages - my hydro-wotsits were dignosed before 1st IVF but they thought it was still worth a go. After that one didn't work I had a tube clipped but then three further -ves, at which point they suggested I had tubes removed, and am just about to start FET. Just realised that this probably isn't a very optimistic story(!) but the main thing is hang on in there and try to keep positive on the 2ww. Love Alison x

Missy1 · Post by **Missy1** » Wed Jun 25, 2003 11:41 pm

Hi Sharon, I also had a hydrosalpinx for my first IVF. My Dr had said that my tube was open and therefore was not a hydrosalpinx so she didn't want to remove it but after my first failed IVF I insisted. I had it removed about a month ago in laparascopic surgery when she found the tube had endometriosis lesions and thats a whole other story!! I also did have hydrosalpinx. The surgery was OK, but I still feel a little tender down there. I'm now on bcp to quiet down my endometriosis (refused the Lupron Depot) and plan to do IVF again in September. But anyway, I would say, don't give up. Although your chances are reduced, there is still a 10-20% chance that it will work. Keep that PMA. Keep us posted on how things work out for you and good luck.

Tracey S · Post by **Tracey S** » Thu Jun 26, 2003 9:16 am

Sharon had it for my first ivf which was ectopic so out came tube and other clipped - had it since and still got it now - am 9.4 weeks pg! if it doesn't work - and it will - have them clipped good luck Love Tracey xxxxxxx

louli · Post by **louli** » Thu Jun 26, 2003 9:17 am

Hi Sharon, I have had endo and due to that had one ovary removed and recently both tubes with a laparotomy. Age 38 and only one ovary so probably fairly low ovarian reserve but have been told that if I cannot produce my own eggs we have a 45% chance of success with donor eggs. If you are younger and still have both ovaries then tube removal should not decrease your chances of success with IVF. Know what you mean about wasted time. We first saw IVF consultant in March 2002, he did diagnose hydrosalpinges but failed to treat them laparoscopically and then said nothing more could be done so we saw another three independent consultants and a surgeon before getting the surgery done. Surgery was 8 weeks ago so I feel like I lost a whole year sorting the hydrosalpinges. Keep on trying! PMA IS VITAL IN THIS GAME! GOOD LUCK, LOU

NicolaUp · Post by **NicolaUp** » Tue Jul 01, 2003 10:17 pm

Sorry, don't know anything about Hydrothingy but just wanted to say how much it irritates me that we all go to our consultants assuming that they are doing all they can to help us with our end goal but that there are so many tales of woe where stuff isn't diagnosed and you have been through great emotional and financial trauma before they start looking for other stuff. (I knew I'd find a full stop eventually!) Why can't they do all of the tests at the beginning? I'm sure they would say because they are so expensive and poss not nec but at £3000 a go for IVF if I thought I'd only have to have three goes instead of four, I'd pay. Sorry, a bit of a rant. Good luck, keep positive. Nicola.

Dawn Blake · Post by **Dawn Blake** » Wed Jul 02, 2003 11:29 am

Don't give up on this cycle yet, lots of positive thoughts, my experience wasn't great re this, but I know of at least a dozen people who also have hydrosalpinx, and they are now Mummy's, everyone is different - so don't let my story depress you. This is a bit of a raw subject for me, as I have always known since pre-IVF that my tubes were blocked, but never once was it mentioned about having them taken out, even when I suggested it! I have gone through 4 private IVF treatments, and all failed. As I am relatively young (30 now, 27 when started this whole thing), we decided to seek a second opinion, so detailed our medical history in a letter to Sam Abdalla at the Lister, and he wrote back inviting us to see him personally (truly honoured!). He went through the notes from my previous treaments that I took along with me, and said it was a CLASSIC CASE of Hydrosalpinges, and that he thought fluid that was in the tubes was leaking out and washing away the embies that were trying to embed - GREAT, £££££££'S literally down the toilet! Following his consult he booked me in the very next week and drained and clamped my tubes, cutting them away from my uterus altogether, to eliminate any washing away happening again. We are now on our 5th go with Sam, and hoping to have ec next week, depending on scan result tomorrow). I would strongly recom that anyone with this condition to have their tubes removed, as they are no good to you like that. The op was done laparoscopically, and I was in and out in the same day, bit tender, but nothing major, it was only done in March, and am already in a cycle, so didn't eliminate months of waiting either. As it was a gynae condition and not fertility, I claimed the cost of the op on my private health insurance, Sam completely backed us up re this, in fact it was him that suggested it in the first place, and was adamant that I should not have to pay for it - OK by me, it was over £3k! So, if the worst comes to the worst (which I am sure it won't), then maybe speak to your consultant re tubal surgery. We both feel a lot more positive this time round, but will just have to wait and see. Good luck, and please don't let my experience dishearten you, It just one case in many. Best wishes D x

Missy1 · Post by **Missy1** » Wed Jul 02, 2003 1:06 pm

Hi Sharon, Just wanted to say I was thinking of you, how are you doing? hopefully keeping those embies nice and comfortable. Good Luck. Hi Dawn, Just wanted to wish you luck for this cycle. After everything you have been through you deserve for this to be your time. Can I ask you a ?, how long did you leave it between your surgery and IVF? I had my surgery 4 weeks ago and I'm still a bit tender, IVF is planned for September, which gives me about 3-4 months to recover fully, do you think this is long enough? Thanks Missy

sharoninsomerset · Post by **sharoninsomerset** » Wed Jul 02, 2003 1:12 pm

Thanks every so much everyone for your wishes and info. I'm 36 (37 in December) so we are very anxious not to have anything hold things up. This is why I just couldn't believe it when they said they had found this condition on my 2nd attempt!! I was also imagining months of waiting lists, recovery time before we can start again. I may have waiting lists (we have our treatment at NHS hospital affiliated to ivf clinic) but if its long I'd be willing to pay. I'm just glad (thank you Dawn) that the recovery isn't too long. I'm almost tempted to have a tantrum at them and get them to give me a freebie for next time, as it should have been spotted from the beginning? What do you think, is it something that should have been spotted? I have open tubes but very scarred, lots of lesions etc. I was also admitting to hospital for 3 days following my dye test as the dye wouldn't drain and caused severe pain - should they have investigated more? I'm sure the doctors will wriggle out of it some way!! Thanks again everyone Feel better now, for info and because of rant!! Love Sharon

Dawn Blake · Post by **Dawn Blake** » Wed Jul 02, 2003 2:38 pm

Just realised what a mammoth posting my last one was - sorry ladies! Missy, I had my operation in March, and started treatment in May, so had 2 af's inbetween, but Sam said if we were ready to we could have have treatment in April, it just wasn't convenient for us as we were going away etc etc. Sharon - I would have thought the radiographer would have seen you had them, as they look like great big fat distorted sausages on the screen, but who knows? The recover period is really really quick, I came out and rested that day, was a bit sore the following day, but was safe to fly to New York (yipeee) 6 days later! There was no stopping me out there, let me tell you!!! If you haven't got private med insurance yet, take it out and then speak to your consultant, save some of your pennies then! and why not, after the thousands of £££'s we have to pay anyway! Get this cycle out of the way first though, the tubes are probably not an issue! Love Dawn x

Karenwinter · Post by **Karenwinter** » Mon Jul 14, 2003 9:39 pm

Hello Sharon, My name is Karen and I am at Musgrove - seeing Dr De-Cothi and Dr Bidgood. I had a lap and dye in May and was told I had Bilateral Hydrroslapinx - which basically means both my tubes are filled with fluid. Dr Bidgood has advised that I have them both clipped abd the fluid will drain out. he said after the operation there is a 20% chance of me geeting pregnant which I believe is just a bit less than the IVF success rate in Musgrove. I am booked in to have the operation on the 15th Jan 2004. we will then have to try for a baby again naturally for about six months and if nothing happens then we will have to have IVF. Dr Didgood did say thought that it is a big operation and I will have to off work for 5-6 weeks but if I do not have it done he would want me in to drain the tubes anyway as it can lessen your chances with IVF. I am lucky that they found this out before I had any IVF as we can only afford one go. I do not know if many people have got pregnant after the operation and would be interested to find out. Karen x

sharoninsomerset · Post by **sharoninsomerset** » Tue Jul 15, 2003 7:09 am

Karen & Dawn Firstly Karen nice to hear from you, I think I read a post of yours before and you are in Wellington? I'm am at Musgrove under Dr Bidgood - horrified to hear you are having your operation in Jan is this the quickest you could get in? From what Dawn posted she was in and out with recovery of a few days and was done by Laparscopy - are you not having it done this way? I'm seeing Dr Jones tomorrow so need to be armed with as much info as possible. Sharon

Missy1 · Post by **Missy1** » Wed Jul 16, 2003 10:31 am

Hi All, Sharon, good luck with your Dr visit today, let us know how you get on. Karen, I had my left tube removed by laparoscopy and both ends were cauterised, this was day surgery, recovery was much quicker, back to normal within 1-2 wks. Are you having a laparotomy? I think this is a bigger op and recovery may be much longer - maybe you should ask your Dr if your procedure could be done under laparoscopy. When I was researching for my op, I found a couple of interesting articles on the web - www.asrm.org - go to search and type in salpingectomy - there is an article called Salpingectomy for hydrosalpinx prior to IVF, also www.advancedfertility.com has ultrasound photo's of hydrosalpinx. Good Luck.

sharoninsomerset · Post by **sharoninsomerset** » Thu Jul 17, 2003 7:44 am

Well I had my appointment today. It was supposed to be with the registrar as the Consultant (Dr Bigood) wasn't available until October but he turned up instead as he wanted to see me, which was good. He explained that the hydro wasn't present before and that the drugs etc. can stimulate everything and the hydro has just recently developed. He is going to clip the tubes (although they are open they are very scarred) via laporoscopy and drain the hydro if it is still there. So it's not a big procedure and he's going to try and get me in on his emergency list in the next few weeks!!!! So well pleased! I hope to have the procedure done have my wedding at end of August and then start cycle again in Sept/Oct. Karen, sounds to me like you are having a laporotomy and that he is trying to 'fix' your tubes as you said that you will be trying to conceive naturally after. With me he is clipping them so that can't be used and no chance of conceiving naturally. Missy, thanks for the info on the websites, most helpful. Thanks to everyone. Love Sharon

Advertisements