First post, intro and couple of questions

Hey guys, I'll give you a basic rundown =)

Well after being in pain for about 6 years now I decided to see a specialist in an attempt to find out what's wrong.

After speaking with my mum and my grandmother, found out they both had endo, and mum's was extremely bad.

Now I don't know if I have it yet, I'm about to find out. But I do have painful periods, and require at least one day off work per month. The associated nausea has been getting worse over the last couple of years. Ovulation is also very painful, and I can't really move for a few hours each time. Strangely enough I am very dizzy for one day each month, at the same stage of my cycle :rolleyes: Also have a sore left leg each month at the same stage. No idea why, but it's interesting none the less!

My gyno has suggested I have a diagnostic laparoscopy (he also mentioned burning off with lasers - is this an old technique or ok??)

I guess my major question is the approx cost of the lap (just for diagnosis without any work being done). It would be done privately. I know I can ring and find out, but I guess I'd rather be prepared for hearing it. I doubt I can afford it.

Also, does anyone know the best stage of my cycle to have the lap done? (I may have plenty of time to prepare as the earliest I can get time off work is next March!)

Sorry about the novel, any help appreciated.

Cheers
Bec

Hi Bec
Welcome to BB. I'm sure you will get lots of advice here from the LTAC girls.
I had a laproscopy/hyesterscopy last year. My out of pocket costs for the day procedure were $303. I got $145 back from Medicare - basically for the anaethetist. All my other costs were 100%covered by my PHI.

I had my lap in the 3rd week of my cycle so that my FS could check out where my lining was up to and whether it was in sync etc. as well as checking out tubes and endo.

Hey Bec and welcome to the forum.... Burning is now really not the done thing with endo these days, the 'iceberg' theory is more and more common now. Iceberg means they 'cut' the endo out rather than 'burn' it as by cutting it they are removing all the endo tissue (ie roots and all) so to speak. I think it might be a good idea for you to check out the ECCA website. They have a big clinic on the Gold coast and one in Brisbane. Just google search ECCA. (Endometriosis care centre Australia). I saw a leading endo surgeon in sydney, as i had grade 4/5 endo, and now i have no pain whatsoever. I don't even know my periods are coming these days and have literally been 'caught out' a few times. I don't need time off work, it has apparently increased my fertility greatly, the most in the way of pain killers that i take is panadol, no more neurophene or coedine and i now live a normal life. I had to have bladder tissue and 20 cms of bowel removed as the endo had envaded these organs also. This took two major operations, and I was out of pocket approx 7000 dollars, but i was a private patient seeing leading surgeons..... I wish you all the best and try not to worry to much ok. You don't know yet, and I am probably up there with worse case scenario...
love leis xx

Hi and welcome to BB Bec. I concur with Leis wholeheartedly. I've had six laps and the endo always came back when the laser treatment was used. I'm actually awaiting 'iceberg' surgery for stage 5 endo in November.

I wish I had heard about the new techniques years ago it would have saved me heaps of time, money and energy. Find a dr in your area that uses this new techique, that's my best advice....

Good Luck:pray:
Cindy

Welcome Bec,

The ladies here have given you very good advice.

I've had endo too with late diagnosis at 36 and removal at lap (this was all done in the one procedure). Kar is right that PHI covers most of the costs for the surgery but there may be a few little out of pocket things. It is very much worth having it done, no matter what the cost because you will not believe the relief you feel afterwards. I thought my painful periods were normal but I now realise they are not. At least the diagnostic is a good first step because you can't go ahead with any kind of treatment until you know what you are dealing with.

In general, the surgery will be scheduled for the day your period is to arrive. They don't want to interrupt any pregnancy which may have taken hold.

Good luck with everything.

Thanks for the replies, I thought that would be the case. I'd definately rather not waste time and money on old school surgery.

Although you have pointed out my dilemma Melbo, being PHI. I was on my parent's policy until 18 months ago (when I turned 21), and haven't been able to afford it until now.

I think I'll get the lap done with my gyno and request no treatment be performed. Hopefully it's not endo and it can be treated somewhat cheaper ( I think I'm dreaming!)

If it turns out to be endo I'll hang out the 12 month waiting period and see the ECCA surgeon in Brisbane for treatment. What's 12 months when it's been going on for years ;)

But I must say, knowing that there may be relief if I had the money (even slight relief would be heaven) ... it's going to be a long 12 months!

Thanks for your help again, I'll make some phonecalls tomorrow :)

Bec

Might be an idea to take out PHI before any exploratory laps Desist, PHI are usually quick to ask you about pre-existing conditions. Right now you don't know what is wrong, that might not be the case once you've had exploratory.

Sometimes you can speak with the surgeon and they can sometimes and i quote 'sometimes', will give you "mates rates", or schedule fee you. Schedule fee means they will charge you upfront, but not charge you a gap and you will get all of your money back via health fund and medicare. Kar is right, join fund now so they don't query pre-existing condition.

I hope it all gets sorted out soon....

love leis xx

PS Kar, I love your baby bump on your av... so cute...

Would be a good plan except I've been going to doctors about it for about 8 months now, and for a condition to be pre-existing I'd need to have had the symptoms within the last 6 months. Unfortunately there's quite a paper trail to say this is the case, and they recommend their own doctors to review the case and decide from there. Oh well.

I have PHI now so if it's still bad in 12 months I'll be off to an ECCA specialist :)

Hi and welcome Bec. Your symptoms do sound like endo, but it's not the end of the world if you do have it. I had mine removed when I had a lap to investigate infertility. I was a public patient, but may have payed something, as I think being an infertility clinic it was kind of like being private. I don't think I had to pay too much though. I'm not sure how they removed the endo, as I was still drugged to the eyeballs from coming out of surgery when they told me about it. I had IVF and got pregnant first go. After two babies, my symptoms are much better than before. Good luck, I hope things go well for you.

Hi Sana,

I used to worry about fertility until I saw this forum, now I know I have nothing to worry about :) And that's a huge relief. I don't plan to start a family for a couple of years at least, but it's great to know it shouldn't be much of a problem.

I got some quotes and it looks like I can get it done privately, just not through an ECCA surgeon.

I'm just so ecstatic that I will have less pain by next year. Can't wait now!

Oh keeping in mind I may not even have it .... although I'm 99% certain.

I'll be sure to report back here after my lap :) Hopefully I get some relief out of it.

Cheers
Bec

Bec I actually found that the removal of my endo during my lap didn't help with the pain. Sorry :/. Maybe they didn't get it all. I hope it helps you. After having two children my pain is only mild now, and the bleeding is really light which has been a pleasant suprise. I'll look forward to hearing how you get on.

Hrmm it's ok, I'll just pretend I didn't read that :p

Desist, you may find that Susannahs surgeons possbily burnt her endo rather than cut it out.. this is why it didn't help her pain, when they cut it the pain relief is drastically reduced! Hopefully you can find a surgeon that uses this modern technique to rid the problems for you... Take care leis xx

Hi Desist. I too had endo cut out rather than burned in Jan.Also had die studies and examination of adenomyosis (too entrenched to cut out). My out of pocket costs were a about $450 - the biggest component was the surgeon's gap (he's one of the best of the best in Melb).

Several years ago before I had PHI, I had a few gynae procedures done as a paying patient in private hospitals. Yes I had to pay for the bed (day surgery) but the drs fees were mostly covered by Medicare. It was well worth doing rather than waiting for a public bed. My FIL has recently done the same thing. The safety net might help, as well as being able to claim a bit more back on your tax.

I would also recommend going to an ECCA dr.

Good luck with everything!!

Hi Blackbird... who was your ECCA dr in Melbourne??? I went to ECCA in sydney, but thing the ECCA surgeons are as good as sliced bread!!!! leis xx ps good luck with the pending birth

It seems that only the ECCA guy here uses the new technique, and unfortunately his prices are just way out of reach. At least for another 12months when the insurance kicks in.

I'd wait the 12months but if there's a chance it's not endo and can be helped some other (cheaper) way, I would be saving some time and maybe even alot of pain ...

And yes, getting it done privately as I wouldn't trust the public system! Will be booked in within a few weeks :)

Cheers
Bec

Leis - I saw Jim Tsaltas. He was soooo caring with both DH and myself as well as being a genius with the 'knife'. All the nurses raved about him and said they wouldn't let anyone else touch them. He also does IVF but in the end we didn't need to go down that path as clearing the endo seemed to do the trick (still counting my blessings on that front!).