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!).

I have heard of Jim, I saw one of his collegues in Sydney, Michael Cooper, who is the Sydney equivalent of Jim... IYKWIM!!! Yeah ECCA are great.. Michael has had great results with his girls in regards to natural conception after endo removal... You give us hope with sharing your story too... Leis xx

Ok I'm booked in for 24/11 to have this checked out. I honestly felt like I was dying last period so it can't come soon enough. I can't wait, it feels somewhat similar to an exam at uni (how strange does that sound!) so here's hoping my body passes the test :p

My boss told me that, no matter how well I feel, I have to have the whole week off work (WH&S liability issues), which is handy considering I can't take annual leave for at least another 6 months and haven't had a holiday for over a year.

Might book into a nice apartment at the coast for a couple of days as a reward ;)

Good luck desist.. you will get great relief from the op.. don't worry to much and enjoy your lovely anaesthetic sleep.. i love anaesthetic sleeps...mmmmzzzzz...leis xx

hi, i had a lap done just over twelve months ago. They didn't know if i had endo or not but it turned out that i did. They burned it off with a laser and i also had a mirena device implanted during surgery. This is worth looking into as it preserves your reproduction system should you want kids. It cost me about $30 and medicare about $200. Really helps with the pain. Also i think its better to go private and so did my doctor. I had the same problem withthe health fund and they wouldnt pay for the hospital coz my "condition" was preexisitng. I ended up paying $2500 for a private hospital and they paid about the same for everything else. Best of luck!

Thanks guys, casskid how was the pain afterwards compared to before the lap?

And I can't wait for the sleep, except they're not "happy" sleeps like they used to be :( Although that's probably a good thing or I'd get addicted to it :p

The first week or so after the lap is pretty bad. But then it settles down again. Hard to tell coz i also got the mirena but that takes about 3 months before it really helps. A year later and the pain is hardly ever there. Much much better.

Ok the verdict's in, I have endo.

Not sure where it's located but he burnt off as much as he could

I was lying in recovery in a fair bit of pain and pretty sick, the nurse asks me "how's your pain out of 10" - I said about 7/10. Then she asked if it was a contstant pain or more of an on/off ache. I said its pretty bad constant pain. She then said "oh, well if it's constant it's more like a 3/10, you don't need any painkillers! :eek: (cool smilies btw)

Luckily the next nurse was a little more caring lol.

Only problem now is that I've forked out all this money, and the surgery will only provide a medical certificate for one day (4 days lost wages from work). I was stuck in bed from the friday till tuesday night. Then there was the 2hr drive home to get to work the next day ...

But all in all I hope it helps some :)

Hi De

If you are in pain, you have every right to ask for something for it... the anaethetist would of writtern something up for.. that is his job and the nurses job to give it..... grrrr that makes me so angry ... (I am a nurse, and i know what some of my collegues can be like, they should of retired along time ago)

Secondly did he 'burn' or 'cut' the endo out? Which Dr did you use? Oh and also make sure you ring the surgeons rooms and speak with his secretary and get another medical certificate for those days not covered ... especially considering you had a 2 hour drive home....

Hope your surgery helps

leis x

Hope you feel better soon!

Thanks

It was the surgeon's secretary who I asked for the medical certificate. Maybe I could ask the referring GP? The surgeon is not ECCA or well known, he's just a gyno, i believe specialising in fertility these days.

They burnt it off as I couldn't afford to have it done properly (cut out) without PHI.

Wish I could say I feel better but I can't yet :p I've been a bit sore for the last week, but I've heard that this will ease? Next period due within a week so I'll see how that goes!

Thanks again

Hi,
I had endo for nearly 7 years before i was diagnosed. I also had a paper trail and when i went in for my lap, my private health fund told me it was pre exisitng and would only pay docotrs fees and the hospital fee was up to me. I argued until i was blue in the face as they deemed it pre existing before endo was diagnosed. I asked how periods could be anything but pre exisitng but nothing helped. The hospital ended up costing me over $2000 but it was a private hospital also. Good luck!!

Well I think I can safely say that that op didn't work lol

The dreaded evil arrived at 2am this morning. Sore back but nothing too bad, got back to sleep after a couple of hrs.

Got up at 7am basically PAIN FREE and I was ecstatic to say the least! I couldn't believe it I was so happy.

Then come 1pm I was worse than ever before :frown: ... if only I could get my money back lol

Ahhh the joys of being female :P

Sorry to hear of your grief with AF at the moment.. hopefully next time you can get an ECCA surgeon. Since my endo has been excised "cut".. i have had no pain and now live a normal life and only take a few panadol during AF time...

Look after yourself...

Leis x

Thanks for your support, I guess i'm more disappointed than anything, I wasn't expecting too much. But what I really wasn't expecting was for the pain to get so much worse! (if only there was a money back guarantee :P)

Come 11pm last night I would have been in hospital had I not been too sore to go there lol.

I actually ended up passing out from the pain which hasn't happened before :confused: If only that could happen more often it would be alot easier to live with ;)

It is good knowing that it's only next October that I can use an ECCA surgeon. Here begins the countdown :)

Yep... there will be light at the end of the tunnel.. ECCA will assist... Sometimes though the first period after a lap can be very painful.. i have never experienced it, but i have heard from many girls that this does happen.

Best of luck and bring on October next year... You should book in now... LOL...

Leis x

Desist:

I'm sorry for interrupting your post...I just wanted to say it's pretty normal for the first period after endo removal to be hell. You are still not properly healed inside and AF aggrivates it alot. My first period after my last lap well pure hell painwise, I even ended up back in hospital as I was sure something had ruptured.

The next period, 1 month later was much better, then the one after that was better still. I had stage 3/4 endo and I had a great surgeon do it then (this was before I had the net and didnt' hear of all these orgs and support they have now). I was in total $5k out of pocket, but it did fix it for a year. I had open stomach surgery by a dodge public hospital surgeon a year later due to a large ruptured endometrioma (emergency surgery) and most of the endo had stayed away, it was only through my reproduction organs instead of bowel the next time.

I'd say what you are experiencing is totally normal after endo removal and doesn't necessarily mean the surgery didn't work at all. It was really nasty the first AF from what I remember.

Good luck hun.

Don't be sorry at all tara, that's exactly what I wanted to hear! Hopefully that's the case with me also :)

And I know what you mean about rupturing... felt like bombs were going off in my abdomen lol. Horrible horrible night!

Hi Bec,

I had my first lap approx 1.5 yrs ago now, and ALL of it was covered by Medicare. My only out of pocket expense was the initial and follow up appt with my specialist, which was approx $120 each time (medicare gave me $65 back on each occasion)

Update!

No improvement from last month, still worse than before the lap, found myself is all weird and wonderful positions trying to ease the pain. Maybe I could develop my own brand of menstrual yoga ;)

Diamond, I can't remember specific costs but most of it was out of pocket. I's guessing different surgeons might have different medicare rebates?