Endometriosis Help

Hi everyone - still quite new on here. I have suffered with endo for years and years. Recently things have worsened and to cut a long story short I have had two laps this year, one in march and the second last week. They found last week that the endo was been growing quite agressively since march and is currently classified as active stage 4/5 with several large adhesions.

My gynie has prescribed Danazol which I am meant to take 800mg per day for six months. Im sure most of you here know about the risks and side effects associated with this drug. To say Im reluctant to take this drug is an understatement.

I have done some research and have an appointment at the ECCA in Sydney. The appointment is with Dr Michael Cooper - Wondering if anyone here has seen him. My current gynie (in newcastle) uses diathemy (sp?) to burn off the endo and after reading the ECCA site I now know that there are better options availbale to me.

Although the surgery was only last week the symptom are already raising the ugly heads and I'm sure that the agressive nature is still a problem. Any advice ????? Do you think Cooper will want to operate again so soon after my lap ??? Do doctors of the ECCA prescribe hormore threatments like Danazol or are there alternative treatments ?????

Thanks
Cindy

eek Danazol,

Leis sees Dr Cooper (firemansgirl) and calls him her miracle man.

I haven't heard of anyone using diathermy for years. I had my endo diagnosed 13 years ago and they were cutting the endo out back then, so it sounds as though your doc might be a bit behind the times. The problem is that it's like an iceberg and they don't get in underneath and cut it all out when they burn or laser it just on the surface so even though you just had a lap there would most likely be endo left behind.

I am sure Leis will see this post and give you her feedback on Dr Cooper.

I have had severe endo since I was 17, and have had 12 laps for it, Danazol, Zoladex etc. I hated the Danazol and Zoladex. I don't know about Dr Cooper, but it sounds like a good idea to get a second opinion and to take along with you all your previous history/notes from operations etc. Best of luck on your journey.

Magic - Did you hate the Danazol enough to warn people like me off taking it ?? What side effects did you get and were any permanent, if you don't mind me asking ?? Im so worried that the cure is far worse than the disease......

I had the prescription filled but have not taken any yet.........Im waiting to hear what Cooper says. Hopefully he'll rest my min at ease one way or another.

Ok here I am a Doctor Michael Cooper fan....LOL that rhymes....I have had two major procedures with Dr Cooper this year. Two because I had severe endo on both my bowel and bladder.. and Dr Coops won't operate on both at the same time, due to ? leakage!

Let me assure you this man is the best... he is one of Australias leading surgeons in endo removal by using the 'ice berg' theory! Cuts it out, roots and all... Since my surgery I have had NO pain, during before or after my period. I have gone from 2-3 days in bed, my acne has gone, and I feel 110% better.

Michael is an extremely caring and sympathetic doctor. He also has a wonderful secretary Kathy (irish chic) who is very accomodating and friendly. As Dr Cooper strictly practises mainly in the feild of endo, and not obs and general gynae, he is almost always available to talk with, if you have concerns... Michael also has specialised doctors working with him, such as Prof Solomon or the gorgeous Dr Matthew Morgan who assist him with any colorectal issues (ie endo on bowel)

One word though! Michael isn't cheap if you go private! BUT I would of morgaged my house pay him to get the releif i have today, by such a wonderful experienced doctor.

Basically this man is a GURU! Who is extremely respected within his profession. If you have any questions hun, please email me. If you want i am happy to chat with you on the phone prior or after your appointment.

all the best and rest assured you are in the best of hands...

Leis xx

Thanks leis. I'll send you an email.
Cindy

i have replied to your email hun xxx

Hey Leis, you should edit out your email now so you don't get spammed. I can't remember what they call those people but apparently they can scan forums for personal info.

oooohh yeah top idea hun, thanks for the remind.... i just pmd you...leis xxx

Seen Dr Cooper today. You were absolutely right Leis...he's very nice and explained everything to a tee.

He has recommended surgery for 1st november as he thinks that the endo is at least stage 5 and is attached to my bowel. The up side to that..... is that I get to meet this gorgeous dr matthew morgan you speak of. Well there has to be a positive somewhere!!!

You also wern't wrong about him being expensive. Boy just as well we sold our house today and the ppp paid ten grand more than what we expected to get......

Anyway just wanted to update everyone ....leis I know your busy ATM and didn't want to bother you over the w/e. I'll email soon about the logistics of the surgery etc. Thanks again for your support. Your a gem..

Cindy

Cindy - you won't regret it. I have severe endo and have had bowel involved, it's not pleasant but really good to get on top of.

All the best with your surgery. I have had 9 laps so I can really sympathise.

:clap: yahhh for Cyndi and :doctor: dr Cooper... Cyndi you are well on your way to a life changing procedure... keep me updated....xxx