HyCoSy scan after trachelectomy - anyone able to offer experiences?

Hi all,

I have an appointment booked for 2nd April to attempt a HyCoSy scan in order to check my tubes etc, as I have been trying for a baby now for nearly 4 years. I had a radical trachelectomy in November 2010 and I am concerned that they will struggle to carry out the scan because of the scar tissue. My consultant is aware of my condition and happy to go ahead but the previous consultant I was under (have switched hospitals) wanted to do a laparascopic procedure under GA, which I am really not keen on as I have a phobia of being put under. Has anyone else successfully managed to have the HyCoSy scan done after RT?

Thanks,

Amy x

I have just attempted a HYCOSY today. RT August 2012 which included full lymph node removal for 1B1 cancer. They started with an internal ultra sound that all looked fine. The problem occurred when the tried to inject the dye. They could find the opening of my stitch to pass the tube through. It appears that there is no gap. However I do have normal periods so there must be a gap somewhere. I have to go back in two weeks once my period has arrived so they can use the flow as a guide. If that doesn't work the last chance is to do it under GA. The whole process was fine and nothing to worry about. Don't be too disappointed if they can't do it first time. They will keep trying. Good luck x

Thank you so much for your reply. I am in exactly the same position as you and was worried about the problems you have experienced. Guess will just have to see how I get on Thursday. Fingers crossed for you for the next attempt - let me know how you get on. Good luck xx

How did it all go? Did they manage it? I got a lovely reply from an expert on here. Even if they can get in IVF is still an option. They inject the embryo into the womb usibg ultrasound guidance. I am going back on Thursday. I will let you know the outcome xx

Hi Amy,

Thanks for your message. They couldn't do it, no :( it seems the opening isn't central either, it's over to one side and they couldn't get in. I have to wait now for an appointment to have it done under GA, they want to try and make a better opening to the womb as well as they said it will help if I have to have IVF. Bit gutted and not looking forward to the op but got to be done. Hope all goes ok for you Thurs, keep me posted xx

Hey,

I am in the same boat as you

so:

thursday trail embryo transfer on day 2 of period (nice)

Consultant found the opening but it was tiny

Apparently great news- without an opening options are limited

The next step:

Trans vaginal scan next friday

Operation under GA to widen cervix and inspect tubes. This will be done using ultra sound guidance. However if they cant do it I have consented for keyhole surgury at the same time so a camera can guide them. I already have scars there from lymp node removal. While they are inside they will cut out any scar tissue and take a biopsy ( just that word put me on edge). The hope is this will help conception. If not artificial insemination and then IVF.

I am really happy to still have options but I could cry at the thought of more ops, more investigations etc. However I am going to spend my time waiting for the op getting fit and making sure my body is ready for IVF.

We can do this, just got to keep the faith xxxx

 

 

 

Hiya, looks like we are! That can't have been a nice experience, but at least they found an opening. I was gutted when they couldn't do the scan, I'd been waiting for two months for it and was such a let down when it didn't happen. Same as you, I am glad there are still options but dreading another op - I have a phobia of being put under and can't stand needles - but know I have to do what it takes. Did they say why they were taking a biospy? That hasn't been mentioned to me, not yet anyway. I have a pre appointment on 28th of this month then hopefully the procedure should be some time in May, I may get a date when I go to the pre op assessment. Think I will follow your lead and start getting myself fitter and ready for whatever is still to come my way, dounds like a good plan and something to focus on! Do you know when your op might be yet?

 

It's a real support having someone who knows what I am going through, a lot of my friends don't really understand how complicated it can be and whilst it is nice they are all so positive about things, I do sometimes find it hard to accept. Especially seeing people having babies around me all the time. Thanks ever so much for listening to me and sharing your experiences too - like you say, we can do this! xxxx

Hey, 

I did reply earlier but it doesn't appear to have saved. I haven't got a date for my op but I do have a scan a week on Friday. I think the op will be in a couple of months. If it is going to be IVF I hoped to do it over the summer hols as I am a teacher. However a motto I live by and something which seems to be true is "give god a laugh and tell him your plans" I am sure this will work out and I have every confidence in the medical team. It will all happen when it is supposed to. I totally understand how hard it is when everyone around you is having a baby. I make myself feel better by just accepting this isn't my time, going out and having fun. After everything I (we) have been through I refuse to get down. If you need a chat drop me a message. I will obviously keep you posted on what is happening. Who knows where we could both be this time next year. The ops won't be great but the end result could be fantastic. Take care and keep in contact xxx

Hi there, I am hoping i'm not too late posting this!  I was in a similar position... After a failed attempt at the HyCoSy whilst I was awake, I had this proceedure done under GA (around 8 months ago now).   For me personally, this wasn't an issue as I've gotten more used to GA :-) but I understand the fear.  The proceedure was less than 15 minutes and I felt compeltely normal when I was woken up.    I was told that the entrance was just a little "fiddly" - which isn't unusual for us trachelectomy ladies!  

Since then I've been undergoing more fertility investigations under a different specialist and they have actually been able to insert a catheta whilst I was awake.  As with Amyrose, this was whilst I had my period (nice), it was a good 45 minutes of prodding with a very thin catheta! Once they'd found the entrance, then they were able to do this 3-4 times without trouble. 

I know it's easy for me to say, but you're not alone, I completely understand as I feel like this too.  There's a VERY good chance they'll be able to access your womb, and if you are having periods then there's definitely a way in.   It's just that our anatomy is different and the consultants need to "draw a map"!  I've had 4 people try now and only 1 has succeeded whilst I was concious.  

If you want any advice or have any questions about the proceedure please do pm me and I'll try to help!

xxxxx

Thank you both for your kind comments, I feel a little more at ease now and more reassured that there are ways round things and I am not alone. I hope you will both keep me updated on your progress, as I will too, and have everything crossed for us all xxx

Wow, with the three of us working together I am sure there will be no stone unturned. Hopefully one way or another we will all get answers we want. My next test is a week on Friday so I will let everyone know. Thank you for the advice and guidance xx

Good luck for Friday, hope everything goes well for you xx

Hi everyone,

I had my TVS today and all is well. The lady doing the scan said everything is as it should be. So that is promising. The doctor then advised me to ring admissions to chase my hospital appoitment. The current wait is 8 weeks. I am guessing that I will be going in june time. If they can get through the opening apparently the next step is artificial insemination. How are you guys doing? Any news?

Hope all is well x

Hi Amy, that's good news about the scan looking good!

no news my end yet, i am still waiting for them to make a decision as to whether I need dilation or not.

i will keep you updated, take care xx

Hi guys,

Just something I wanted you all to bear in mind - I saw my oncologist Friday and was talking to him about what the fertility consultant was proposing to do. He was not happy at all that they wanted to dilate the opening to the womb, he said it carried a risk of tearing the stitch and also increasing the risk of miscarriage. He has taken my fertility consultant's number and wants to talk to him about different options so my procedure is currently on hold.

 

Amy x

Hi Amy  thanks for the update... annoyingly I've been given completely conflicting information to you.   I've been told that they would like to do the dialtion (for the best possible chance of success) and I'm now on the waitlist.

My onchologist and FS are all at the same hospital and work closely with one another.  My onchologist says it absolutely won't be a problem (i've asked about the stich and holding a future pregnancy) and in fact, it's extremely common with Trachelectomy patients pre embryo transfer.

Good luck ladies :-)

xx

  

 

Well that is confusing! My next appoitment is 26/05 for my pre-op. I will ask the question because they are going to attempt the widening at the same times as the keyhole. The quest for knowledge continues.

I will report back x 

Well that is confusing! My next appoitment is 26/05 for my pre-op. I will ask the question because they are going to attempt the widening at the same times as the keyhole. The quest for knowledge continues.

I will report back x 

Hi both, I will chase my consultant again today and see if there is any news - I am so confused right now!

 

Amy x

Hi both, I will chase my consultant again today and see if there is any news - I am so confused right now!

 

Amy x