# just had second failure, advice please



## Daisy Bunce (Apr 16, 2006)

Just had second failure, we go back to the clinic on the 7th June and I'm wondering if what I want to ask sounds sensible or not? It's been two years since the lap to remove my endo and I'm convinced its back and growing again, the best time for things to work is straight after isn't it, so shouldn't I have another lap before trying IVF again? Fed up of being fobbed off by doctors but don't want to sound like crazy woman asking to be operated on!!!
Be grateful for any sugestions and any positive stories, need something to hold on to at the moment.


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## bagpuss1910 (Nov 8, 2005)

Hi daisy bunce,

So sorry to hear your news. Haven't got any advice sorry but i am sending you a huge hug (sorry smileys are not working at mo). take care of your self honey.
Lorna
x


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## Alix (Apr 11, 2006)

Hi Daisy Bunce,
I'm sorry to hear the IVF not working. I'm not expert on these things, but it might be worth asking the consultant about another lap. Remember that it is your body after all, so don't let them fob you off. I know that is easier said than done!
Good luck. I hope everything works out for you.
Sending you lots of      .
Love
Alix
xxx
P. S I've blow you some bubbles for luck.


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## Caddy (Feb 14, 2006)

Hi Daisy.

There is evidence to show that IVF has a higher success rate once endo has been cleared or there was a recent study to show that women who had been on Zoladex or similar for three to six months before IVF had a higher success rate. I had three IVFs with basically untreated endo and despite good embies, had three BFNs. I think all the drugs really aggravated my endo cos I had no symptoms til after the second go and was left in agony after the third.

My advice would be to ask about your endo and how it could be affecting things at your appointment and don't be fobbed off like I was.

I wish you all the best of the luck and hoping you become one of our positive stories! 

Love Caddy x


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## Daisy Bunce (Apr 16, 2006)

Hi caddy, Alix, bagpuss and clarity
thanks v much for the hugs and kind thoughts its just good to know your not alone.
caddy - thanks for the advice, I'm definately going to ask about another lap, it is so easy to be fobbed off and I feel like I've let the consultants do that so far. A friend of mine also has severe endo and she conceived naturally straight after her lap, so I really feel I need to explore this. I know it has to be IVF for me because of the damage the endo has done to my tubes but I really really feel if I had another lap I'd be giving the IVF my best shot. I also think like you that the drugs have affected my endo, I have aches that I never used to have.
clarity - so sorry to hear you've also got these probs. My endo and septum were treated seperately but this was because they didn't find out about the septum until after my ist IVF and I'd had the lap for the endo about 7 months before. The septum was sucessfully removed via a hysteroscopy. I like to think that if they'd known about it earlier they'd have treated them together to save having 2 lots of general anaesthetic but I don't know. What are they going to do for you?
Love and hugs
Daisy


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## jax (Dec 13, 2004)

Hi there,

I thought I'd write a reply with my experience. I have just completed second full IVF cycle (first BFN, another aborted and second BFN). The doctor at the clinic I'm going to now says she doesn't like to operate - they found an endometrioma on my right ovary before this treatment and then found two more when they did EC. She reckons that every time you have surgery, you run the risk of damaging your ovaries and the surface of them which may hinder you later on. It seems to make sense. In between cycles they keep me on the pill or now I've got this ring thing to keep my ovaries resting as much as possible and keep the cysts at bay or from growing further.
Good luck!


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## jocole69 (Dec 19, 2004)

Hi,

I think if you have a skilled endo specialist doing the op you probably have the best chance of IVF working after the endo has been removed. I've not had IVF, but just on clomid and they say IVF will be the next step for me (although dont think i will go it cos of the drugs feeding endo) If I do decide to have it though I will def have a lap 1st to give myself the best chance, currently i have pain again and a choc cyst, probably brought on by clomid, sadly.

Good luck and dont get fobbed off like Caddy said.  Jo x   

PS. I know what you mean about sounding like a   asking to be operated on, i feel like that too!


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## Daisy Bunce (Apr 16, 2006)

Hi Jo,
Thanks for message. I hope the clomid works for you, wishing you tons of luck,
Claire


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## skye (Apr 6, 2004)

Hi Daisy,
  Dont know much about endo im afraid, but cant they give you a scan or lap n dye to make sure its not coming back before you have your next tx hun,
I always say trust your body, if you feel something is wrong then you have a right to demand that investigations are done before hand. Hope all is fine


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## Reb (Mar 27, 2004)

Hi Daisey, A lot of gynys dont like to operate on endo as they often cannot improve things and possibly make things worse.  However, Its my opinion that this is mainly due to their lack of expertise in dealing endo.  I would only accept the opinion of an endo specialist as to whether an op would be beneficial.  Check out the dr fosters webite to locate the nearest one to you.  Just because your consultant cant op to improve your chances, doesnt mean that an endo specialist cant. 

I was told 3 years ago by a regular cons that I needed a laparoctomy (sp?) involving a large incision to remove my right ovary.  I waited until last year before getting a 2nd opinion from an endo spec who has successfully removed endo cysts and undone all my adhesions without losing an ovary.  This was all done by keyhole too!!!  A far cry from what i was offered by my regular consultant.

Good luck  

Love

Becca
x


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## jax (Dec 13, 2004)

Hello, me again. Just wanted to tell you my history - I had my first IVF right after a lap to remove large choc cyst off ovary. It was not good - only 6 follicles, 5 eggs and only 3 embies. Only two made it and both low grade. BFN. My new doctor who recommends leaving cysts where they are has tested my FSH every month and scanned me too to check the cyst doesn't grow any more (while on the pill), Last cycle, with the cyst there, I got 13 eggs and she found two more cysts inside when they did ec - she drained them all when she was in there. We got 7 embies and 3 good ones (5 cell) were transferred. Sadly a bfn so still no joy but the best cycle yet even with endo cysts. There seems to be a great deal of uncertainty about having surgery before IVF - my orginal gyny recommended it but this IVF doctor doesn't because of the damage caused to the delicate ovary tissue each time. I guess its just a case of getting a few opinions and then making up your mind on what's right for you. Good luck xx


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## Daisy Bunce (Apr 16, 2006)

Hi Jax and Becca,
We've been back for our follow up appt and fertility consultant wasn't convinced that further surgery would make any difference. The positive from that was that the endo that my endo specialist removed doesn't seem to have come back around the ovaries at least(they couldn't see any endometriomas, think I've got the right word, on the scans) But I'm still going to ask him when I have my next appt as I feel that things has been worse otherwise. It can't do any harm to ask and I feel its up to me to do this as they are based in diffferent hospitals and so there's no communication.
We now have 3 frozen embryos and fertility consultant was very definate that I don't need further surgery to go ahead with these and basically left it to me to decide whether to pursue another lap prior to a full ivf if its necessary. Its all so confusing.
what I'm finding even more confusing at the moment is that I've started my 1st period since bfn and for the first time in my life I've had no pain. Don't get me wrong its wonderful but how can I go from months of pain worsening during AF, to taking all the ivf drugs which seemed to cause endo to flare up, to AF at bfn being absolutely awful to this. I didn't have pain free periods straight after lap when things should have been at there best!?! They'll definately think I'm mad if I say had pain free af but I feel endo back!!!!
Sorry this has been such a ME, ME post. How are you all getting on? xx
ps jax, whats the ring thing you have got to rest ovaries?, sorry if I'm being thick


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## jocole69 (Dec 19, 2004)

Hi Daisy, again.

I have now had 5 months of clomid with no joy and so IVF is my next option (if i get offered it and want it?!). I have been in more pain again and am also sure my endo is back. I saw my fert registrar last week cos of my pain and she is lovely and scanned me. she couldnt find my choccy cyst, which i guessed as its ruptured i reckon (had bad pain 2 weeks ago) anyway just to say, she mostly talked about IVF and not my pain. fertiltiy Dr's are only interested in getting you pg, but endo spec are interested in your pain. I have written to mine now as i cant put up with this pain again!!  

So, they do have diff priorities i feel.  If i do go for IVf ive decided its prob a v good idea to have a lap b4 to see what is going on endo-wise etc....  having endo can affect the environment of the womb and your hormone balance etc...

I would see what your endo spec says to be honest. We know our own bodies, better than any Dr!!
I think personally,  i would feel much happier to get rid of all endo and adhesions if i was gonna go for IVF.

Skye - sadly endo wont show up on a scan of any kind, only a lap will show it up.

Good luck daisy.      Jo xxx


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## Daisy Bunce (Apr 16, 2006)

Hi Jo,
So sorry to hear that clomid hasn't worked and that pain is worse .  I hope you won't have to wait to long to be seen about it? I can't really offer any constructive advice about going for ivf or not as I jumped at it because we were told it was definately our only chance, I guess its just a case of taking some time to work out whats best for you? Your right the fertility spec and endo spec come from such very different perspectives, my gut feeling is that endo spec won't do another lap but I feel I've got to ask. I feel the same as you that surely its better to get rid of as much endo as possible to have the best chance but then I read what jax's consultant said about surgery causing damage to ovary surface and then that makes sense too. So confusing!!!
Hope you get to see them about the pain soon
Claire xx


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## jax (Dec 13, 2004)

Hi Daisy,
sorry I've not replied for a while - I've been feeling very low and have tried not to think about the whole thing! I'm bouncing back though so here I am. The ring thing I have is called a "Nuvo" ring and here in Spain you can just buy it in the pharmacy although the doctor gave me my first one. It's just a small (2 inches across), clear, plastic ring that you insert into your vagina and then leave it there for three weeks. I've been put on and off the pill for years to keep the endo at bay so this is a new thing. I have a couple of friends who have used these just for normal contraceptive use and swear by them - none of the pill's side affects etc. I was a bit worried about taking it out, thinking it might have got lost up there but had no problems!  I'm due to go to my clinic tomorrow as AF arrived last night and my doctor scans me every month on Day 2 to check my ovaries and also my blood hormone levels. I doubt I'll get the go ahead this month as its only a months since last bfn but who knows! Good luck on your journey. Love Jax x


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## sugary (Feb 17, 2006)

Hi
i've found that you get a different answer from each different doctor! I was told there was nothing wrong with me in January and to go away and try naturally  - I kNEW there was something wrong as things had changed - they did a CA125 and then a lap and I had severe stage 4 endo a huge chocolate cyst a clubbed right tube and the left tube was welded to my rectum! if i'd listened to the consultant i' have been wasting months with no chance. My advice is leave no stone unturned and if you think somethings being missed pursue it - these docs seems all too keen to waste vaueable time which noone has no matter how young. I am so cross with them as they also put me on clomid and tamoxifen and didn't even bother to check the basics (clomid can make endo worse!).
Loads of luck anyhow and keep questionning them!


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