Endometriosis UK
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Consultant Natter - insist on seeing the boss!

Very briefly, lap locally in April 2014, referred to expert - frozen pelvis (they call it cake!), lap in Jan 2015 to help prepare for IVF by removing large endometrioma, adhesions and fluid filled tube. Registrar misunderstood something so I woke up still with blocked tubes, waste of time, massive upset and being trying to see the 'boss' ever since. Been so depressed since then, awful thoughts, wanting to give up on kids and more. Just last week finally got to see the consultant and he explained it all, didn't apologise but didn't deny the confusion either, which in this world of litigation is understandable. Never go into surgery by only seeing the 'minions' first, no matter how much you think they get it, the person with the scissors needs to speak to you properly!

Saw some very interesting pictures of the procedure step by step, learnt that everything is stuck to everything else, that although its really bad I only get 'bad periods' compared to some of the awful things I read on here. I did disagree though that people with endo have to keep having surgery....I wouldn't be now if we hadn't been trying for kids, sometimes it's agony but sharp not prolonged from the tubes and I can deal with the rest with painkilers. IVF is possible to try now but massively reduced chances as the hydrosalphinx (blocked tube - couldn't be unblocked) can leak back into blood and feed toxins to baby, also can line the womb like cling film and may prevent implantation. Decided to do surgery again for best chances, very annoying having to wait but if I kick off it's not going to help, this chap now understands the problem and that as a teacher IVF in the summer would be preferable so hopefully a date soon! He's also the head of the fertility clinics so staying amicable the best! Apparently one factor in an op date is how much pain you are in - don't be shy at coming forward!

Thought maybe the other tube would work but apparently its way to broken as well. This is a major psychological blow as having them both out allows for no 'miracles'! Got to go with science though! Seriously gutted to hear this, although not surprised. Could leave it but then if it became fluid filled a later date more surgery would be needed. Nearly 38 now so got to get a move on! Started trying at 35, don't leave it too late ladies, we started then to allow for needing help and waiting lists and glad we did! Once we start I hope I might actually have some eggs left, obviously the endo has eaten a bit of my ovary this time and I had another chocolate cyst removed 10 years ago from the other one :/

Long road behind us and ahead but getting there slowly. Periods all to pot since surgery but 3rd one now only 3 days early. 6 weeks after surgery we can go for IVF if cycle back up to 24 days or closer to 28. At the top of IVF list now, yes its been that long lol!

I asked about the future...so stayng pregnant and breast feeding until menopause would work - failing that (lol!) he suggested back to back high progesterone pill or the mirena coil. We'll see!

So what have I learnt....

Would I have gone private if I had know that from 1st pop to GP in October 2013 I would still be waiting for treatment now? Hell yeah! Remortgage and all! However here we are now and getting closer slowly, worth sticking it out now. IVF list so long that although this is all crap at least once I am fixed we can start right away.

Would I skip my local gynae dept next time and insist on referral to the big city? Yes! That would have saved 6 months!

Would I have called sooner than 4 months to see where I was on the list? Yes, after 2 weeks I reckon as they LOST my referral for 4 months!

Ladies, be pushy and polite, insist on the best, speak only to the top people, chat up the secretaries and never go away. Best of luck and fertility to you all. :)

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