Lap & Dye Question!!: Hi, I'm new here and... - Endometriosis UK

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Lap & Dye Question!!

Nett1987 profile image
8 Replies

Hi, I'm new here and have a million questions. But the main thing I want to know is when you have an investigative laparoscopy and dye test to diagnose you with endometriosis- do they actually remove anything they find during that procedure OR if they do find something, will you have to go through the whole waiting period all over again for the removal stage.

I have currently been waiting 8 months for the procedure and am becoming desperate for help as the pain is gradually getting worse (ALOT WORSE).

I'm 31 and have also been trying for children for over 5 years and nothing- I have heard that women are more fertile after a lap & dye - but if nothing is removed- How is this possible?

Thanks in advance....

xxxx

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Nett1987
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8 Replies
Emma511983 profile image
Emma511983

I had planned lap surgery to remove a cyst that was growing on my ovary and to check for endo (I was experiencing fertility issues and was receiving treatment for this). Unfortunately, before I had surgery my condition deteriorated and they took my bloods and ran a CA125 blood test and diagnosed me with endo and they also did an MRI scan whilst I was in hospital and it came back showing inflammation on one of my fallopian tubes.

When I had my scheduled pre-op with the consultant we did discuss what would happen in surgery should anything arise e.g. if the ovary was damaged as a result of the cyst it would be removed. He was also going to check if my tubes were functioning by doing the dye test whilst having the lap and we discussed that if the were retaining water and not functioning he would remove them. He informed me that there is a higher chance of ectopic pregnancy if the fallopian tube is retaining water and it is not removed.

Have you been referred to the infertility department in hospital? I think because I was under his care for fertility issues I was scheduled for an op sooner as the next step was a referral for IVF.

In your pre op you should discuss all your concerns and what will happen if they find something. I would have thought that if they find something they will remove it in surgery as they will not wish to put you under again to do surgery?

I hope it all goes well for you.

Nett1987 profile image
Nett1987 in reply to Emma511983

Thanks for the reply, sounds quite complicated and good luck with everything your going through now. To be completely honest the service and advise I have had through the NHS has been awful. I failed my first pre-opp as my blood pressure was too high so they sent me away and then I came back for an appointment and ECG with the anesthetist who agreed I could go ahead with the op, that was all - there was no information about what would happen on the day or what they would be doing and I have terrible white coat syndrome so I went blank and left. The only thing I remember him saying is " you do know that this is not going to be an op to stop the pain..."

I have been progressively getting worse for the last two years and tried to arrange for investigations into endo back then. They gave me a ultrasound scan and told me I didn't have endo- which I later found out was incorrect as you cant tell through a scan.

I have been let down so many times now and all that I know so far is from the internet.

I have called so many times for advise and a confirmed date and have got no where even though I have to regularly go to A&E in agony- I asked for a referral last week to get things moving at my local hospital with the Center of Reproductive Medicine and my doctor refused because I'm waiting to have the lap "so there's no point".

:( Fingers Crossed they don't just have a look then let me heal just to do it over again in another years time to fix the issue... :(

Marmite83 profile image
Marmite83

My first consultant said he would do investigative surgery and would remove the cyst we knew about but if there was anything else I would need a second surgery to remove lesions etc. I wasn't happy with that so asked for a second opinion and the second consultant said he was happy to remove anything he found while he was in there. He did say if there was endo on my bowel or other organs it would require a specialist in those areas and therefore a second surgery. I ended up having two cysts and quite a lot of tubal lesions removed so I'm really glad I questioned the first consultant's decision. Good luck!

Nett1987 profile image
Nett1987 in reply to Marmite83

Thanks for the reply, Oh wow that's fab. It's definitely a good job you asked.

I don't think I have the choice of two consultants right now- I'm just stuck with one and it seems he's my only option and haven't even heard from him since March. All I know is he is getting very fed up with my phone calls.

As there has been such a long wait for the lap to be done in my current hospital, I asked to be referred to a different hospital, to another consultant and that was months ago and I'm still waiting for that initial consultation appointment.

Fingers Crossed for all and I'm glad you got what you needed xxxx

Sun12 profile image
Sun12

Hi, if they were to do a lap they would laser the endo if they see it, they also flushed my tubes.

Sounds very difficult for you when your going to your apt - have you get some one to go with you.

I’ve seen a few specialists & it’s always been quite a battle. The first one tried to fob me off with coping with pre menstrual symptoms, advised me to eat jam sandwiches- are they for real ! I came back with how that’s going to get rid of my pain!!!, low and behold I had lots of Endo.

What I’m trying to say is you wait ages for these appointments and you have to stand your ground sometimes, that’s what I have experienced taking some one for support may help.

Hope you get sorted xx

Nett1987 profile image
Nett1987 in reply to Sun12

Thanks for your response! I really hope they would remove whatever they find as I am at the end of my tether at the moment and 10000% things are going to be completely abnormal when they do have a look.

My husband will come with me next time, I was on my own for the last appointment and basically just got fobbed off like you. No one fobs him off though if you know what I mean- in fact after years of me attending the doctors and getting stronger and harder pain meds I took him with me just once and then he is the only reason why I am getting this lap and dye thing done.. Because it took my husband to tell them how bad I am.

A jam sandwich is hilarious.... the hot water bottle suggestion makes me laugh too!

Give me the morphine...!?! :)

It honestly has taken me years to get to this point and I am actually thankful the ball is finally rolling, just hope for the happy ever after.

Fingers Crossed for us all xx

StefaniaJW profile image
StefaniaJW

A well-performed excision laparoscopy by a great excision surgeon will ensure all endo removed. If the laparoscopy is diagnostic/explorative, they won't remove any endometriosis other than the little they need to perform the biopsy on to confirm whether or not it's endometriosis.

If you are 31 and want children, I would strongly suggest you get a well-performed laparoscopy by a great team of doctors, including an extremely well-trained excision surgeon. If all endometriosis is removed, the chances of conceiving naturally are extremely high if the tubes were not affected. If they were or the ovaries were severely damaged, it might take longer to get pregnant but a great excision surgeon will point you in the right direction.

Only your surgeon can tell you what kind of procedure they will perform on you. I would suggest you call and ask whether it's going to be ablation or excision, whether they will just diagnose or remove all endometriosis and whether you might need a second surgery in case the bowel is involved or other delicate areas such as the diaphragm, kidneys, etc..

Until you ask these three questions, we cannot help you because we don't know what kind of surgery awaits you

Nett1987 profile image
Nett1987 in reply to StefaniaJW

Thank you so much for your advice! I have just called the hospital and I am waiting to hear back about an appointment with the consultant that will go through everything as I didn't receive any information before. I foolishly thought they would remove anything they found whilst they were there. I will ensure that I have a list of questions with me this time round...if the lap date doesn't come through before this new appointment. It frustrates me that they don't supply this kind of information readily as a matter of practice or even provide pamphlets you can take away and read with exactly what the steps are.

I would love to request a great team of doctors but as I'm on the NHS waiting list I just get the feeling I am going to get what I get. I'm pretty sure I just don't get the choice- unless I pay and I'm unable to afford going private.

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