Its been a few months since I posted. I had my first attempt at IVF which failed on March 14 and its taken me a little while to find the strength to even think about trying again.
Last week I'd built enough strength and started on the road to getting healthy and strong for another self funded attempt at the end of the summer ish. I had an appointment on 26th May to discuss the last treatment and any plans for the future only to be told that my first attempt was "text book", absolutley perfect and that I should have been pregnant but I've got a hydrosalpinx on the right side and this was the reason the IVF failed.
I am gutted to say the least ! It was hard enough to cope with, without being told it should have worked. Don't get me wrong , I am very greatful that the treatment went so well for me, but I am struggling to cope with the fact that the hydrosalpinx on the right side was diagnosed a year ago. I was told at the time after the lap that my tubes should be removed or at least clipped. I heard no news about treatment on the tubes so did some chasing myself and all reports following my surgery never mentioned anything about the right tube. I even got the hospital doing the IVF to investigate the situation and their reports again never mentioned anything about the right tube so I went ahead with a self funded IVF cycle. On the day of the egg transfer, the surgeon was horrified at the amount of fluid in the tube and drained it before transfering the eggs. The hospital doing my IVF are furious and have strongly recomended that both tubes be removed before any further IVF attempts. To add insult to injury, my GP "now" has a report from the surgery a year ago saying I have a hydrosalpinx on the right tube !
Sorry, that kind of went into a rant but I am furious. What I really wanted to ask was " Has anyone with a hydrosalpinx ( no surgery ) ever had a successfull IVF attempt ? I'm sure there must be someone but is success very rare ?
( I responded perfectly to drugs ... 8 eggs retrieved ... 6 fertilized ... 8 and 6 cell embrio replaced with no complications ... No big fat positve )
I don't know the answer to your question, I have seen it referrenced quite a bit but have only heard about BFN in regards, not the BFP's.
Just wanted to say I am sorry you have had to go through all of that! I recently had my 1st cycle cancelled due to fluid in my uterus and I was crushed, I can't imagine going all the way through to find something out after the fact
Aintgotaclue, I am so sorry your cycle failed. I am nearing the beginning of my first...self funded IFV cycle and I cant imagine how the BFN would feel. I also am so sorry that you have had to have what seems like a lack of communication and you are the one to suffer as a result! I wonder if there is some way to argue this and maybe be finacially compensated for what you have spent and lost. You may have had a different result from your IVF if the information had been relayed to you...as it should have been.
I don't know if this will help but, I wanted to share my hydrosalpinx story. I have not heard anything about an IVF cycle with someone with a hydosalpinx. However, my last pregnancy in 2/07 ended in emergency surgery and during the surgery my doc discovered my hydro. When I was in recovery I was told I would never concieve again naturally and should have my tubes removed. At 28, at the time and with no children, I was devastated to say the least. I then went to my first appointment with my RE and he told me the same thing. Said the fluid in my tube was what ended all of my pregnancies.... that weren't in my tube. Obviously the ectopic ended the others. I had so many m/c's that it was clear to me that IVF with my stupid fluid filled tube was not an option. I dreaded it but, had my tubes removed one year ago, this month.
I do wish you luck in whatever your next step is. I am not a doctor..... but, from what I have read and been told by my doctor.... I felt removing the tube was the best option.
Are you concidering it? If you have any questions about the surgery or anything else, please feel free to ask. I would like to help in any way possible.
My thoughts & prayers are with you all!
Smilintrish - Having to abandon treatment must be a very devastating experience. I felt very privilaged to make it to the end as I watched so many people at my hospital having to abandon their cycle which was very sad as I knew how much faith they put in the treatment. I am sorry to here you had to abandon treatment and wish you lots of luck for the future You remember and hang in there too and keep the faith. Keep smiling Trish. x
Pink 8213 - Hydrosalpinx is blocked tubes but also, as the tubes are blocked no fluid can pass through them which causes a large swelling of the tube filled with fluid, blood or puss. The fluid is thought to be toxic to any embrio and another explanation is that any leaking fluid flushes out the embrio before implantation. It is not fully understood why and more research needs to be done. Also, I am new to this too and have a lot to learn so my explanation may be a bit basic, sorry.
Latest update ( especially for mrsctw1 ) I had an appointment this week at the hospital investigating my infertility. Usually I only see the nurse but this week I saw the surgeon ( thought this was strange. ) To cut a long story short ... My suspitions were right ! Following my lap last July, a "large" hydrpsalpinx was discovered and I now have a copy of the report. When I was going for my IVF I questioned the need for surgery before proceeding. I got no answers and no surgery was suggested. Puzzelled and concerned I got the hospital doing my IVF to write to the surgeon who did the lap. This report mentions the damaged tubes but there is absolutely no mention of a hydro, so the IVF went ahead.
At the appointment with the very nervous surgeon, I asked for all the facts .... however the surgeon denied ever receiving a letter from the IVF hospital. " It must have got lost in the post then " he argued with me ! Furious at his pathetic responce , I asked " so how did the hospital doing my IVF recieve a response from you ? " Very flustered he started flicking through my file " oh yes, you are right I did recieve and respond to the letter " Trying hard not to grab the surgeon by the throat and drag him over the desk for his pathetic answers and poor attempt to cover up his mistake, I asked " and what did you reply in this letter " mumbling and skimming briefly over the letter he wrote I stopped him mid sentence ..... " does it mention anything about me having a hydrosalpinx on the right tube ? " ........ " no " he replied !
Very puzzelled, I asked " why not ? " ( you ready for this one ? ...... ) He replied, " oh someone must have dictated the notes wrong or maybe it was accidently deleted from the dictaphone " By this time I'm gripping tightly onto the underside of my chair so as not to do anything I may regret. I was livid but at the same time extemley upset at the fact my perfect little embrio was murdered because of sheer incompetence. Not only were there mistakes made, the surgeon new it, tried to cover it up, had the most pathetic excuses ever imaginable and was just shrugging it off as though it meant nothing. Anyone who has ever been pregnant, especially with IVF will understand how precious and real those little embrio's are and here I have some ******** telling me someone deleted the facts !
Following this he tried to put the blame on the hospital doing the IVF, saying he asked their opinion on whether do do surgery on the tubes first. That was the surgeons responsibility / decision and he was the only one that had seen my tubes. The IVF hospital had never seen them, new nothing of a hydro tube, and were basing their treatment on the facts given to them. At this point I knew enough and to prevent me from pysically attacking him we went on to discuss the tubes. He asked if they could scan me but I refused but we discussed the situation and I am having both tubes removed, ( a bilateral salpingectomy ) on 31st July. This is my only option really and doing it by laparoscopy is not an option as the tubes are so badly damaged.
mrsctw1 - Thank you so much for your reply. There has deffinatley been mistakes made with regaurds to a lack of communication. I will deffinatley be arguing this case and I've gone straight to a lawyer who I see next week. There is no way of proving that the IVF would have worked but I have the original report following the lap and the hospital that did the IVF have the report with the missing facts so proving incompetance is easy. I've done a little research and everything I've read confirms that for a large hydro salpinx, surgery is recommended before IVF and the hospital doing my IVF have now refused to do another cycle until surgery has been performed, now that they have all the facts ( seen my tubes ) Winning the case and having a refund could take years and will probably be too late in the case of more IVF but there is no way I'm dropping it. It is not just about the money ( although it was major funds for us ) it is the stress, grief, our dream, hope, those two little embrio's and the sheer way in which the surgeon dissmissed the situation.
Oh, I am so sorry to hear everything you have been through. I can not begin to imagine. You really have had a time of it but the fact that you are about to start on you first IVF cycle proves how strong you are. ( big hugs ) .
Our situation with having the tubes removed is slightly different as yours although you have a hydro were open so it must have been much harder for you to have them removed. Mine are completely blocked, cause me agonising pain, one has a hydro and are putting me at great risk of an ectopic pg so I can't wait to see the back of them. Ok, seriously, I want them out and its in my best interests medically to have them removed but I am only 34 and childless. I'm terrified, its so final, will I still feel like a woman ? Ahhhh, trying not to think about it yet. It needs to be done and thats that ! How did you have yours removed ? Was it done by lap or the full open surgery ?
I'm truley sorry for rabbling on, You have really given me strength as I have been through nothin compared to you ( and most on this board ) I never thought I would find the strength to get this far, yet here I am getting set for another go at IVF. Many thanx and the very very best of luck with your IVF. If there is anything I can help you with concerning the IVF, I'm here for you. There is so much help and support on these boards ..... you don't need to do it on your own.
Best wishes and I'm here to answer any questions, listen to you rabble, support you when you need to cry and wait patiently in your TWW. ( two week wait !!!! .......it feels more like 2 months so prepare to relax, pamper, treat yourself and just keep busy. Oh and if your really good, you could have DH wrapped round your little finger. It's quite amusing but I think secretly they love it)