IVF with endometriosis-looking for advice/opinions

[caline]

I am under oxford and have been diagnosed as having endometrial cysts in my right ovary. We saw the consultant yesterday to discuss our options. We can either go for IVF (our one free NHS cycle), with the endometriosis untreated or be referred for a laparoscopy to fully diagnose the extent of the endo and have it removed if necessary.

DH has private health insurance through work so we could possibly get the lap and treatment done fairly quickly. There seems to be some feeling that endo makes IVF less sucessful, but I don't fully understand why.

AF is due in the next few days so we could possibly book to have free cycle of IVF straight away.

I'm just in such a dilemma, and not sure what to do. I really don't want to have a general anaesthetic and surgery but i also don;t want to waste time and money on IVF if its not going to work with the endo untreated.

Advice please girlies

Thanks x

 

[Trying4ever]

hiya. i have just had lap...........purely because waiting for ivf in dec/jan. so thought might aswell have lap. to be honest you do not need lap to have ivf. so if you can have ivf tomorrow then have it. cos regardless if you have endo or not they will still offer ivf. even now 1 day afer lap i am wondering if i did the right thing. oh well. just waiting for ivf now. good luck with yours and please let me know how you get on.

 

[Dilek]

Hi Hun

Sorry you have endo and endo cysts. Sorry to but it in, but what size is the cysts? Depending on the size it might effect your treatement and response. Anything bigger than 4cm they usually want to remove it. Are you aware of the consequences of having a lap and removing a cyst? What grade is your endo?

Here are the consequences of the surgery. If they remove the cyst, they take part of your ovary as well, very minimal. Having one removed is usually ok, but occasionally they do reoccur. Unfortunately i think this is usualy the case. You can alternatively have the cyst drained instead of removed. This is what my consultant had suggested to do to mine.

Endo makes IVF less successful because

1. Removal of a cyst will remove ovarian reserve. When they remove the cyst the ovary tissue is removed too and in that there is some of your eggs. Hopefully 1 removal is usually ok
2. Endo can affect egg quality. They might be fragmented and with my own case some off my follicles where empty. They dont know why this is the case. Ive read this to be quite common with other ladies with endo.
3. I have been told by specialist is can also effect implantation and have a higher miscarriage rate.
4. Some of us dont reposnd to well to the drugs and at egg collection we usually have lower eggs collected to other girls with other issues.

This is a few reasons why, but PLEASE dont lose hope. I know of many girls with endo with mild to the extreme have children with ivf and natural.

I also recommend and have read about Zoladex before an IVF treatment. It does have a slightly better chance of it being successful. This drug puts you in temp menapause and you dont get periods and its usually for 3 months and the cyst can and does breakdown. Ive just finished my 4th injection. I did this before my 1st IVF and it did make my cyst smaller. My cyst at that time was 2.5cm.

I would say have a good discussion with your consultant, make sure they monitor you properly through IVF. Its up to you really if you want to have the lap or not. Ive had 2 so far and my consultant really doesnt want me to have another one, unfortunately i have my 3rd one this month.

I hope i havnt overwhelmed you, but I believe you should know everything and know all your options before we commit ourselves.

Feel free to go through my journal.

Dilek

 

[Dilek]

hiya. i have just had lap...........purely because waiting for ivf in dec/jan. so thought might aswell have lap. to be honest you do not need lap to have ivf. so if you can have ivf tomorrow then have it. cos regardless if you have endo or not they will still offer ivf. even now 1 day afer lap i am wondering if i did the right thing. oh well. just waiting for ivf now. good luck with yours and please let me know how you get on.

Hi hun

How are you feeling after the lap? Did you have a cyst as well? Im praying that im going to have my next IVF in Jan as well.

 

[caline]

Hi Dilek,

Thank you so much for your informative reply. You gave me so much more info that what we were told at the consultation at the fertility clinic on tuesday. We weren't told about the endo reducing our chances or increasing chance of miscarriage. Only thing he said was about there being an increased infection risk at egg collection due to possibily puncturing one of the cycts.

I have 2 cysts, both 2cm each. The first dr in october said they would be fine to be left, and then the consultant kind of gave us the option but not much information! Infact hardly any!

I have a phobia of vomitting, and I know it sounds weird to other people, but I really am not keen on anaesthetics. But then I have to weight up the risks. If I conceived with IVF then miscarried I would blame myslef for not having the endo removed.

I don't know the extent of the endo as I have been told that they can only diagnose this by doind a lap.

I'm very confused!!

Caline

 

[Trying4ever]

hm caline.....your right. thats what i thought too. that having the endo removed might help prevent a miscarriage...but who is to say that you would? sometimes endo removal might increase chances of mc! but it could reduce it too.....i like you hate anaesthetics and am just glad this step is all over and hopefully IVF will work.

Good luck with whatever you decide x

 

[Dilek]

Hi Dilek,

Thank you so much for your informative reply. You gave me so much more info that what we were told at the consultation at the fertility clinic on tuesday. We weren't told about the endo reducing our chances or increasing chance of miscarriage. Only thing he said was about there being an increased infection risk at egg collection due to possibily puncturing one of the cycts.

I have 2 cysts, both 2cm each. The first dr in october said they would be fine to be left, and then the consultant kind of gave us the option but not much information! Infact hardly any!

I have a phobia of vomitting, and I know it sounds weird to other people, but I really am not keen on anaesthetics. But then I have to weight up the risks. If I conceived with IVF then miscarried I would blame myslef for not having the endo removed.

I don't know the extent of the endo as I have been told that they can only diagnose this by doind a lap.

I'm very confused!!

Caline

Caline you are very welcome, im here to help and share any info I have. With my 1st IVF I did have an endo cyst, it was 2.5cm. However it seems to have disapeared and my consultant thinks it was removed at egg collection (i dont know if this is true as its not on my report). I didnt have an infection at all. Just the same pain as any other IVF girl.

I did have a miscarriage, but then so does 1 in 4 women who fall pregnant. It is very common but as IVF is our only chance it makes it so much more difficult. I just wished i had more eggs to transfer and maybe then i would have lost one and kept the other. BUT they are all IFS. It just wasnt meant to be.

Maybe good idea to speak to another clinic and see what they think. I think by a fertility point of view, surgery to ovaries is not a good idea. Im sure they will do an AMH test, (i think thats what its called) it checks your ovarian reserve. Its a good indication of your fertility, its quite standard and maybe if your in a good range surgery might help. There is some other tests im sure your clinic will go through it with you. Cant recall them on the top of my head. But its all guess work.

What you said about diagnoses and grade that is correct can only be determined via a lap.

I mentioned earlier there are other sites i visit where there are more endo ladies and im sure you could get some more insight there as well. PM if you would like it hun.

Dilek

 

[Rach27]

Hi there,

I had both laparoscopic surgery to remove endo and IVF 5 months later. The endo was both diagnosed and removed at the time of the laparoscopy (since it cannot be conclusively diagnosed any other way).

I couldn't recommend more having the laparoscopy - at least then you will know the extent of the endo and get the opportunity to remove it.

My IVF treatment failed but I don't think my body had healed properly from the op (an issue related to mixiing public and private medical treatment).

BUT a month later I got pregnant naturally. I was ttc for over 4 years so I can conclude that my endo was preventing me from getting pregnant. I realise this is not the case for everyone but it you can get the operation done on insurance - DO IT!!!! I was also scared of going under aneasthetic for the first time but it's really fine, you won't remember a thing and a private hospital is like a hotel!!

I can't comment on the ovarian surgery side of things...although I did have a cyst removed as well.

Good luck with whatever path you choose to take.

 

[bek74]

Hi there,

I couldn't recommend more having the laparoscopy - at least then you will know the extent of the endo and get the opportunity to remove it.

if you can get the operation done on insurance - DO IT!!!!

I would have to agree 100%. I don't have endo but if I did I would have surgery to see just how bad it was and have it removed.

Your partner has private cover so the surgery won't cost you anything and since you only get one round of IVF through NHS I would be trying to give my body the best possible chance before starting my IVF cycle.

AS for your cyst I am sorry I don't have any advise or knowledge regarding that.

Wishing you all the best.

 

[Bumber]

Caline,

I am sorry your in this fix hun. jusr wanted to give you my experience and opinions,

I have just had lap number four for stage 4 endo and the removal of two cysts. My FS found the cysts when I was having a Hycosy procedure. His stance on it was that I need a fertility based tidy up and removal of the cysts. During the op he managed to free up and clear my blocked right tube which we thought he would remove. So Happy Days.

The op is minimal discomfort and they can give you anti sickness to get you over the vomit fear. I would absolutely recommend you having the op. You chances are so much better if you do.

Bumber

 

[caline]

Thank you all for your replies.
After reading all of you replies and discussing it at length, we have decided to go for our NHS cycle with out having the lap. We've based this decision on the evidence that shows that surgery on the ovaries (to remove endometriomas) can cause scar tissue and upset ovarian function for some months followng surgery. Also, that the endo can grow back quite quickly following the surgery, and from what I understand, I'd have to wait a few months before having the IVF following the surgery,
We have savings to be able to afford possibly 2 fresh cycles so we are going to go for the IVF, and take the chance that it might not work, then consider lap and removal after if it does fail.
Its been a hard decision, and I'm still not sure if its definately the right one, lol. But we have to decide one way or the other and I'm sure if the consultant thought we should have surgery first he would've said so.
Anyway, wish me luck. I am just waiting for my period to start (due any day), to phone up and book the cycle, whoop whoop!!

 

[Bumber]

Good luck Hun xxxx let us know how it goes Bumb

 

[Dilek]

Good luck hun and praying it works first time. let us know how you get on and the drugs yo uwill be on. Im going to have my 2nd ivf in Jan.

 

[caline]

Thank you!
Booked today so will have the schedule sometime in the next week

Very scared