Endometriosis, infertility and IVF - lots of questions, no answers from NHS

[Stini]

Hello, this is my first post. I was diagnosed on the fifth of December, with a laparoscopy, after almost two years of infertility - I'd really had to fight for the lap as my gynaecologist had repeatedly told me I 'wasn't a good match' for endo, despite four different GPs suggesting it when I visited them in pain.

As I was coming out of the anaesthetic, the surgeon told me I was correct, that I have not only huge black patches of endo in various locations (she showed me the pictures, but I was still groggy from the anaesthetic and assumed at the time I'd receive a more formal confirmation with this info, so didn't really take it in), but a good fifteen years or so of scar tissue built up inside me. She didn't explain why this was causing my infertility, but assured me that all of this would be explained at my next appointment, which would be in six to eight weeks, where the gynaecologist would discuss both treatment for endo and IVF.

Well, it's six weeks on. Until yesterday, I hadn't heard anything from the hospital. I've called and left messages with my gynaecologist's office three times, but not heard anything. Half the time when I call I just get trapped in a loop of unanswered phones. I still haven't even had a letter informing me about the results of my surgery - my only source for the diagnosis is one groggy conversation with the surgeon.

Yesterday I got a letter from the assisted conception unit, informing me I'd been put on the IVF waiting list; that when I reached the top, I'd have a screening appointment, and any questions I had would be answered then. That's all.

Has anyone else been in this situation? Are they just going with the old 'pregnancy cures endometriosis' line? The surgeon had suggested I'd need more surgery to get the scar tissue out, but it doesn't seem to be forthcoming. Before the diagnosis, my mum and mother-in-law had offered to club together and support us through two rounds of private IVF given that we were finding the NHS so slow and disengaged (and because while I'm okay just now, by the time the 24 months of the NHS waiting list come around, I'll be over 35, at which time IVF chances of success reduce). Can we just go ahead with that? What about the patches of endo inside me, that have clearly blocked pregnancy in the past?

I'm so confused, and angry, about the way the whole thing's been handled, and I wondered whether there was any way of demanding info about the condition that any of you might know of - dealing with the hospital at every stage has felt like banging my head against a particularly patronising brick wall..

Would love some advice! Thanks so much.

[Sades]

Hello,

Im sorry to hear that they have been so rubbish getting back to you. I found it frustrating enough waiting the 5weeks to talk to the specialist (which is next week), was diagnosed 17th dec. i can be abit inpaitent and like to have all the facts so i went to my gp and

she got it all up on the system and was able to tell me exactly what they found and where and the next steps, she was even able to show me letters between specalists about me so i knew exactly what was going on. Hope you get some answers soon x

[Stini in reply to Sades]

Thanks Sades. I didn't realise my GP would be able to show me all that. Sounds like a plan.

[endobob]

Hi,

No-one gave me info after my surgery. Like Sades I managed to get info from my GP. When I finally got to see my gyn, he said he didn't send out letter because the language is too complicated for patients to understand!!! I was incensed!!! What right have they got to withhold info based on their presumption of our understanding?!

I was also sent straight for IVF rather than having surgery because of my age. NHS waiting times vary but to give you an idea my lap and subsequent referral was in July and started IVF treatment this month at Liverpool.

Hope that helps

[Noper]

I agree that you've had a really bad time, and that the hospital should have got back to you sooner. Have you thought about making a formal complaint to the health trust? That might get you a more thorough response, although I know it's also a hassle.

I was referred for IVF on NHS after a lap and removal of endo, aged 38. I did end up getting pregnant on the 3rd attempt (frozen cycle), and now have a 8 week old baby, but agree that it is better to do IVF sooner rather than later, because the outcomes are better. I did not have to wait anything like 24 months for IVF though - I had the lap in the Feb and started IVF in the November. Also worth checking how many cycles of IVF you get on NHS in your area. My area is good and offers the full 3 fresh, 3 frozen, so I ended up saving a lot of money by doing NHS, and the care was good. If your area only offers one cycle, after 24 months, it might well be worth going private, if you can afford it. A tricky decision I know. Good luck whatever you decide.