endo and TTC

I have been reading a lot of everyones threads and i have noticed that the majority have had laproscopy surgery to diagnose endo.
I have had just been to a private specialist at the hospital who has told me i have classic text book symptoms of endo and without going in to surgery, he is positive i have endo.
since we are ttc, he has explained that he would prefer not to go to surgery beforehand and has sent us home to make a baby. He said that surgery doesn't always fix the problem and if they get rid of 3 endo spots and they can't get the other 2, i may still be in pain so surgery doesn't always work.
I was really happy with this ob/gynae, as he has been the first doc in 5 yrs to even think that there is something wrong me me and it's not all in my head. I was in there for a hour as he explained everything about endo and everything he said was just me, the pain i felt and where it was. I have more pain in my bowel areas and he said i most likely have endo around that area, and it can be very hard at times to remove. He said after i have completed my family, then they will definately recommend surgery to help me.
I am a bit confused now as i am ttc and am worried about how much pain i am going to be in now i have stopped the pill and when i am pregnant. Should i demand the surgery or has anyone else not had the surgery and gone on to concieve without much pain.? :doh:

Unfortunatley the chances of falling pregnant with endo in there are limited, for most. It mainly does depend on the severity of the endo also. I wouldn't be to keen with this Drs answers and partilcarly no surgery... I have been down this road, went through a whole IVF cycle undiagnosed when i knew it was endo, and it wasn't until after a failed IVF cycle that the doctor decided to do a lap that they realised how SEVERE the endo was. I have had a bowel rescetion and cystotomy on the bladder.. my endo was "excised" rather than "burnt"... and i have now have NO PAIN.. a miracle in itself.

Was this a doctor at John Flynn??? I think you should maybe try and see someone from ECCA at John Flynn if that wasn't who you saw. I saw ECCA in Sydney and they have cured me. (well in my mind anyway) Going from days in bed and not being able to function, through to, not even knowing I have my periods (well you know what I mean, blood and all but no pain what so ever!!!)

You can check out the ECCA website if you google it. It is well worth look... Also one final recommendation... ALWAYS and I mean ALWAYS go by your gut instinct!!!!

I wish you all the best....

Love and hugs

Leis xx

This sounds all to weird.
I have been diagnosed with endo and i have not been through surgery, I am waiting for that to happen, Hopefully in the next month, hehe. But not having surgery to fix it, sounds not so right, Its nice to find a Dr that explains things, but maybe no surgery is the wrong solution. All you can do is try.
If it has been a while trying and no luck, then there is obviously something wrong.
Have you had an ultrasound???

Bambi and Beau- no-one can diagnose endo without a laparoscopy, they can suspect it but not properly diagnose it. In the first instance they should be doing a lap and removing every bit they can find. I wouldn't trust any old gyn doing this either. I was first diagnosed at 18 with my endo (I am now 32) and went through my local endometriosis association with a very experienced and well known surgeon who speciliases in endo. It really is the only way to go as there are quite a few gyneas who think they know what they are doing but unfortunately don't.

Good luck, I know it's confusing, just keep asking questions to us and to your dr's.

Thanks for your response girls,
I have just moved to Gladstone so it makes it all the more difficult to find a specialist. I went to see a private specialist at the gladstone hospital, but i will definately ring the ECCA on the GC this week and ask them some questions, because i do want a professional, and whats a little travelling for peace of mind.
I can't believe all the bull$@#% you have to go through to get some answers. Just when I thought I was finally getting somewhere, i just want to bash my head against a wall. :wall: ha ha. But it's fabulous that i can talk to other people with this condition and know that their is relief available...eventually. so thank-you all...much appreciated;)

I have endo and had surgery to get it removed last year. It hadn't effected my fertility at all my gyno said I was extremely fertile and got preg almost first shot so it doesn't have a detrimental effect on everyones fertility level. He told me that it is more where the endo is and what it's wrapped around and squeezing that can cause problems. My endo is currently giving my left ovary and main arteries a nice big cuddle lol. My gyno said that after surgery my fertility would be up prolly in the first 6 months after surgery. It is upto you I think it was worth it though as it was all in the pouch bit and I've been told my uterus will have more room to expand properly so I probably won't show as much as I would of if I hadn't have had it.

p.s sorry about the cruddy typing not 100% with it tonight hope I made some sense lol

i found out i had endo at 25 doctors told me that with out the surgery they werent sure to be exact, i have 3 lots of surgery the last one i had was a major one i had an ovarie stuck to my uterus a tube twisted and stuck to my uterus had it all in my pouch of douglas had it in bottom part of my bowl and also had it in one of my ovaries.
when i had my last lot of surgery doctors told me there was no way i was every going to fall pregnant the way it was, it took me 2 years to get that surgery, when i was diagnoised with it the doctors didnt want to do surgery on me they wanted to stick me back on the pill if that didnt work then they wanted to try enjection to stop my periods for a while, when they were doing that while i was on the pill i ended up in hospital with a massive infection, me personally think if they had of done surgery earlier instead of wanting to try injection life would have been a bit easier.

sharon

Hi Beau,
I agree with the other girls. Get another opinion. Endometriosis really can only be diagnosed with a lap. Ultrasounds and other test just aren't enough.
I had no sysptoms (except TTC for 2.5 years). The lap was done because my FS happens to be marvellous and very very knowledgable about endo. We were all quite surprised to find endo quite happily stuck to most of my lower insides. What could be removed was removed at the time, but my bowel and bladder were left alone, as i didn't have the pain of other endo sufferers so i didn't seem worth the risk of cutting it out.

Please seek other advice.
Good luck,
Jo

Hi Beau,

Have to agree with the girls, if you have been TTC for a while then a laparoscopy and removal of endo is your best bet. Being a bit of an evidence based freak, there is evidence to show that you have a better chance of conceiving post getting endo excised (not burnt) in 6mths post surgery. It does depend on where it is as to how it effects your fertility as well. symptom severity doesn't always match the amount of endo you have either. I don't know how far you want to travel from Gladstone but there is a VERY good gyn on sunshine coast that I travelled to when I lived in rural QLD (Mt Isa and Roma) to see about my endo. The gyn I am seeing now in Newcastle had even heard of him. If your interested, let me know and I can pass on details (he is not only good at his job but nice as well - 2 in 1!).

Good luck what ever you decide,

Mich

Hi michelle,
sorry haven't been on in a while. I have been waiting to get to the 6 month mark TTC, before i made a appoint to see someone, and now i'm there (already), so i was going to make a appoint on the gold coast because my family is there, but if you could give me the details of that gyn in sunshine coast that sounds great, as it's not that far either, and i'm happy to see a good gyn from word of mouth. Did you have your endo excised off with him and is he a public/private doc.
Sorry bout all the questions. thanks.

Beau, Have you heard of Dr Khoo in Rockhampton? I have just been to see him after TTC #2 for approx 5+ years, and he booked me in for a lap which was done 2 weeks after my first appointment with him.
He is private and operates at the Mater in Rocky.
Had my lap done almost 2 weeks ago and he put me on Synarel to help with the Endo before we start on IVF in 3 months.
Best of luck finding someone understanding. I saw an awful Dr once who told me I had the symptoms and family history, but wasn't old enough at the time to actually have it!

Nic

Hi Beau,

I think I am able to write his details here - I guess the moderators will ask us to correspond privately otherwise. I can't remember all the rules!!

James Orford
71 Blackall Tce
Nambour QLD
07 5441 5700

Tell him I said hi! As far as I know he is private and operates at Nambour Selangor Private Hospital (over the road from his suite) and Calounda Private Hospital (I think).

Let us know how you go.

Nic,

I liked the way you say TTC 64mths. We are just about to hit the 2 year mark for TTC#2 and months sounds much better than years doesn't it?

Michelle, months sure do sound better than the years :)

Nic

ha ha yes it certainly does sound better in months than yrs, although i've only been trying for 6 months, i wish you all success soon after trying for babies for that long a time. Hopefully success is not that long away for everyone.
Thank-you for your reply michelle, and nic, that gives me more options around my area and i don't have the added stress of travel.
Nic when you had you lap how was your endo removed.? Hope you are feeling better and good luck with you IVF.
sorry bout all the Q's. thanks everyone. bo

Hey Bou,
Sorry for taking so long to reply.
My endo wasn't removed, he said I had 'sheets' of it instead of the typical chocolate cysts and lots of little spots all over the place. He was concerned that if he tried to remove it, he would damage my uterus and ovaries, because he wasn't sure how thick the sheets of endo were. He has put me on Synarel for 3 months to try to help with it, then we move onto the IVF.

Are you thinking of getting a second opinion?

Nic

yeah i was thinking of it,
It's very nerveracking, because you read that some women had their endo removed straight away excised, or lasered, then some that had the lasers the endo has returned, and some womes doctors won't remove it at all depending on your individual condition. It's difficult because it's my body and you kind of just have to deal with what the doc deals out to you. Not to mention it's all very scary..and the ecca doctors sound wonderful however they are private and if your like me, without private cover, it's waiting at the public hospital and hoping that the doctor you get is experienced in what they do. So i'm guessing the more comfortable you are in your doctor and the more good reviews you get the better. ha ha worth the thought.:)

Hi Beau

I have had endo for about 15 years or so now. I had a lap about 10 years ago and went on the pill (was not thinking of children then). About 2yrs ago we decided to ttc and have been trying since. Also, since been of the pill the pain has been really awful (can't go to work). We started IVF as the doc said that basically it will fix your problems. This was not true in our case. After our first failled IVF cycle we decided to get a second opinion. Sure enough he suggested to have a lap to increase our chances of pregnancy as he said having endo basically halves your chances. So anyway I am having my lap on Friday the 14th and then starting our second IVF cycle almost straight after that. I would probably get a second opinion.:)