IVF and Endo. Entitlement help please......

[floofymad]

Hi,
Sorry if this is a bit rambling, but I would be really grateful for some help please...

We saw our Fertility Specialist a week ago, who has labelled us as unexplained infertility, even though I have Stage 3 endo. Because he said we're unexplained, we're not entitled to IUI until after we've been trying for 2 years, and IVF after 3 years. (these times are just to get on the list, which is about 8 months wait)

He also said IUI was not recommended for people with endo and they're usually told to go straight to IVF.

What I'm wondering, is whether we are 'unexplained' if I have stage 3 endo?....
Isn't he basically contradicting himself, by saying that IUI won't work because of my endo, so we need IVF, but he's not going to let us have that for ages, because we're unexplained??????

Sorry I hope my questions make sense. I'm just wondering whether I've got a leg to stand on and complain, or whether he's actually right.

Thanks everyone

 

[Please]

Hi! I just read ur post and was like 'I don't know much about endo I won't post' then I found myself feeling p*ssed for u. Them waiting times are correct we are unexplained and tried for three years before being referred for IVF, but there is supposedly nothing wrong with either of us. U clearly have something that is stopping u getting PG, if IUI wont work their saying natural wont so u not unexplained so why can't u be referred? Or vie heard people having endo removed (not sure how) and going onto become PG naturally have they offered u this? I can't believe there expecting u to just go through heartache after heartache each month when the chance is so slim (don't get me wrong I'm sure people do get PG with endo) I do think you should tackle them about the decision. Best of luck sweetie sorry I rambled butvquite upset for u. X

 

[floofymad]

Thank you Please. That's exactly what I thought. If IUI won't work, then natural won't work, so therefore we need help.

 

[silarose28]

Hi Floofymad

My FS tried to say I was unexplained. I did't agree and just wouldn't go away. In the end I had a lap which showed I had endo which wasn't severe and I was then referred for IVF on the basis of this. (I was 35 so time was running out for me!) Though I didn't have much in the way of scars, my FS told me that the chemicals produced by endo can interfere with ovulation etc. which can really impact on fertility. I agree with everything that you say and think that you should go back to your FS and ask these questions. When I couldn't get an appointment I wrote to my FS for answers! My FS hated being challenged but I stopped caring in the end! Good luck hun!

 

[floofymad]

Thank you so much for replying Silarose... I'll keep pestering them! Just like I had to, to get my endo diagnosed in the first place!
I'm seeing a BFP in your signature - congrats hun! x

 

[Honeyblossom]

Go back! Maybe ask your gp to help. Your fs will have written to your gp to this affect. Wait 2 weeks go see your gp and get them to write for clarification it does sound barmy. Sorry youve been left high and dryxxx

 

[teapot]

Hi Floofy,

Sorry to hear you are struggling.

Endo itself doesn't automatically mean you need IVF, although it can make it more difficult/take longer to achieve PG.
How was your endo diagnosed? Have you had a laparoscopy? & if so, did they not try & laser it away? ...If not, ask for this. OR, have they at least checked your tubes are open?
If your tubes are open, they won't send you straight to IVF due to it being invasive.

my own personal experiences are:
...my cousin has severe endo, has had 3 x laps over 2 yrs to remove/try & control. she got PG naturally.
...I have endo, had most of it lasered away via a laparoscopy, but mine has damaged & blocked my tubes, hence no chance of natural PG. We were referred for IVF due to blocked tubes, not endo. They may have tried to unblock my tubes (before resorting to IVF) had I not been already aged 34.

Perhaps discuss further with your GP. I found out investigations & treatment followed a very methodical approach & made sense, although I appreciate different PCT's will follow different protocols.
Timewise, it's frustrating, but they want to give you your best chance at conceiving naturally before involving IVF.

Hope you get some answers soon. x

 

[floofymad]

Thanks Honeyblossom. I've got an appt for Thurs so will ask docs advice...

Teapot - thanks for the advice. I had a laparoscopy in July last year and it was lasered away. I didn't really feel any better afterwards and pains are still there. Was told either keep ttc or go on hormone injections. Waiting for letter to get tubes checked. FS said he thinks they'll be fine.
Ideally, I'd like to conceive naturally, rather than IVF. They tried me on 3 months of 50mg clomid, and the pains on the 2nd month of it were horrendous. Not sure how I'd respond to IVF drugs.
I just keep wondering why we can't seem to conceive naturally when DH has a high sperm count and my endo is apparently not causing a problem....

 

[slb80]

Floofy, I hope you get to the bottom of it. I have been having very bad endo symptoms again the last 6 months or so but they refused to do another lap as it was only 3 yrs ago that I had mine lazered away. This did however do a hsg and found that my left tube is partly blocked and my cervix had a mucus plug. The partial tube blockage is likely to be from the endo. It could just be something simple the hsg could flush out? Sadly our infertility is mainly male factor so will need icsi, but we don't know if the nhs are funding right now in our area.

Good luck and hope you get it all sorted and the hsg sorts it all out for you xx