diaphragmatic endometriosis

[ssn]

Hi all,
I just had last week my first lap & I been diagnosed with server endo involving also the bowel & the diaphragm. I'm now booked for a second, major operation to try to remove all of the endo. After reading different articles about diaphragmatic endometriosis, my understanding is that an open chase operation may be required in order to fully remove everything (this is because the liver is in the way & some tissues cannot be discovered/removed through lap). While they may be able to clean some, it is likely to reoccur because it cannot be fully treated in that way. However, an open chase operation clearly has some major risks as well..... I wanted to ask if anyone has the same thing or know anything about it. ....
Also, I know that in some cases they try to shrink the endo with hormonal treatment prior to operation to reduce the extent of the tissues & the operation....
Also, because it is going to be such a complex operation, I really want to ensure that I have a really good surgeon. Does anyone had Dr Craig Murphy operating on her or knows whether he considers to be good (for removal of endo from the bowel)? Does anyone know how Dr Luk Rombauts is like?
Any information would be very much appreciated, as I'm completely lost.
Thanks
ssn

[MissMagpie]

Hi Ssn,

I had 2 major operations last year that involved being cut right open. The first was an emergency op in which they only did minor things inside. I had a 10cm cyst on my left ovary and lots elsewhere. They chopped the top of the cyst in hope it would shrink, but it didnt.

I then consulted an endo specialist and he operated on my last July. Since my ureta was blocked due to the cyst hence causing kidney problems, I had a urologist together with my gyno operate on me plus I had endo on my bowel so a bowel surgeon was involved too. My op took 5.5 hrs and I spent my first night in intensive care. I was lucky that I didnt need a bowel re-section, as the endo was only on top of my bowel so he only scrapped it. I had a stent put into my ureta to open it up as it was squashed and had it removed 6 weeks later. Since I wanted to get pg, my gyno also removed a fibroid I had and basically fixed my "anatomy" in readiness of doing IVF once I recovered. Because the cyst on my left ovary was so big, they had to remove it and I also lost the left tube too.

The op was very painful and I could barely walk out of hospital 7 days afterwards. It took me 6 weeks to recover all up and I couldnt fall pg until 3 months after the op.

I am now thankfully pg and pain free for now

I first discovered I had endo 6 years prior in which I had a laparoscopy done where they removed the cysts at the time and was then put onto hormone treatment to further treat it however as you can see, it came back, with AVENGENCE!

I hope this has helped. Please feel free to ask me any more questions

Im in Melbourne so can HIGHLY recommend my doctors

Take care,

Tania

[ssn]

Hi Ssn,

I had 2 major operations last year that involved being cut right open. The first was an emergency op in which they only did minor things inside. I had a 10cm cyst on my left ovary and lots elsewhere. They chopped the top of the cyst in hope it would shrink, but it didnt.

I then consulted an endo specialist and he operated on my last July. Since my ureta was blocked due to the cyst hence causing kidney problems, I had a urologist together with my gyno operate on me plus I had endo on my bowel so a bowel surgeon was involved too. My op took 5.5 hrs and I spent my first night in intensive care. I was lucky that I didnt need a bowel re-section, as the endo was only on top of my bowel so he only scrapped it. I had a stent put into my ureta to open it up as it was squashed and had it removed 6 weeks later. Since I wanted to get pg, my gyno also removed a fibroid I had and basically fixed my "anatomy" in readiness of doing IVF once I recovered. Because the cyst on my left ovary was so big, they had to remove it and I also lost the left tube too.

The op was very painful and I could barely walk out of hospital 7 days afterwards. It took me 6 weeks to recover all up and I couldnt fall pg until 3 months after the op.

I am now thankfully pg and pain free for now

I first discovered I had endo 6 years prior in which I had a laparoscopy done where they removed the cysts at the time and was then put onto hormone treatment to further treat it however as you can see, it came back, with AVENGENCE!

I hope this has helped. Please feel free to ask me any more questions

Im in Melbourne so can HIGHLY recommend my doctors

Take care,

Tania

Thank you so much Tania for your reply. It is really good to be able to share with someone that understands. I'm really sorry to hear about your experience, but its good to know that you are now pain free.
If you don't mind I had more questions:
How come you needed an open operation rather than lap?
Did you need to do hormonal treatment before and/or after the operation?
Are you trying IVF at the moment?
Who was you Dr?
Did you go through the public system or private health insurance?
Thanks again for your help.
Have a lovely weekend.
Shelly

[ssn]

Thanks Tania so much for your reply. It helps to be able to share with someone that understands. I'm really sorry to hear about your experience, but its good to know that you are now pain free & pg. Congratulations!!!! Very happy for you!
If you don't mind I have a few more questions:
Did you need an open operation (rather than lap) because of the size of the cyst?
Did you take an hormonal treatment prior or/and after the operation?
Who was your Dr?
Did you do the operation in a private hospital?
Thanks again for your help.
Have a lovely weekend.
Shelly

[ssn]

Sorry Tania, I had one more question.
Did you try after the operation to first fall pg naturally or did you go straight to IVF?

[MissMagpie]

Hi Shelly

Due to the extensive work that the doctors had to do was why they had to cut me right open so they could access the different areas.

I didnt do any hormonal treatment before this op. I dont think it would have helped because I had such sever endo inside. I only had hormonal treatment after my 1st lap when they removed the cysts. However, I had cysts everywhere this time including the big one on the ovary.

I used Dr Jim Tsaltas who both works for Melbourne IVF and Endo Care Assoc.

He together with my other doctors worked out of the Freemasons hospital and since I have private health insurance I went privately.

We didnt try naturally because firstly of my DP and mines age and also my DP's sperm is a bit "iffy" as well so Dr.Tsaltas said to go straight onto IVF. Thats not so say we cant in the future try naturally

I hope this helps!

Take care,

Tania

[mizzi37]

thanks for all this information.

i am also in melbourne and have just been diagnosed with an 8cm fibroid inside my uterus and a 2cm lesion on my ovary.

i am so scared but i might contact your doctor to see what he can do for me as we are also TTC.

xox