[ozzie]

hi
i was diagnosed with svere endo in january 2003, i had a large ovarian cycst removed at this time & as much of he endo that could be removed was.
i know it has affected my bowel as i get a monthly period from my bowel as well as my normal period. the cycst grew back as quickly as it was taken away.

i have just had my 3rd unsucessful cycle of ivf & was wondering if anybody else had the same stage of endo going by what i've said. if so what stage is it as nobody has ever told me if its grade 1 / 2 / 3 ect.

any success story's also as i am trying to keep positive but talk of endo fighting the embryo's in another thread has me doubting my chances more than ever.

 

[Reb]

Hi Ozzie

I am so sorry you are losing your positive thoughts and I suspect that may be my fault as I have been fretting about endo stopping implatation.  I have come to the conclusion that no one really knows the answer to my question for sure as even the consultants seem have varying views.

Please dont let my 'panic' posts put you off.  I think the main thing is to find a cons that you trust and be guided by them.  You could also ask about having your endo tx'ed if possible prior to your next ivf.

I to have severe endo with endo cysts on both ovaries and loads of adhesions.  I was really trouble with endo on bowel (no bleeding though) before I had lap a couple of years ago.  The cons cut some adhesions and I only get twinges in my bowels now with constipation.  This is a lovely subject this is nt it!!!

Anyway, as far as I know endo is described as either, minimal (stage 1), mild (stage 2), moderate (stage 3) or severe (stage 4).  I do feel though that some cons have varying views as to how they grade it.

I hope the above does nt scare you.  You have obviously been though a lot.  I'm afraid I am not a success story as I too have had 3 failed fresh ivf cycles, but I do know that endo girls do succeed with ivf.  I cant have my endo treated as it will involve losing an ovary and I just cant afford to do that as they are both affected.

I am going to try acupuncture for our 4th go and hope that will help me detox to reduce the effects of endo.  These are only my thoughts though.

You are not alone.  Why not join us on the endo chat thread?  We support each other going through tx etc and you will see that I got some positive replies.  Women like us do succeed, if not I would nt be putting myself through this again.

I wish you all the best and I'm so sorry I may have caused you to worry.

Love and luck

Becca
x

 

[Sarita]

Hi there
I have endo and pcos and am going to start IVF in January, just wondered if you ladies could offer any advice beforehand.
At the moment i'm feeling quite down about ttc and and everyone around seems to be getting pregnant like it's the easiest thing in the world!

Any help, much appreciated.
Lots of luck and love to you all.

S xx

 

[Goldilocks]

Hi Sarita

I also have endo on my left ovary and PCO and have just started IVF. I was told my left ovary probably wouldn't respond well to IVF, and to expect my right ovary to have to produce most of the follicles. A week ago, I started injecting the FSH. I had my first scan today, and the nurses were shocked how well my ovaries have responded already! 21 follicles so far, but more interestingly, 9 from the ovary with the endo! They have reduced my dose of FSH from today to ensure I don't over-stimulate. So although I am still a long way from a BFP, endo and PCO are not necessarily a major obstacle in IVF.

Goldy 

 

[Reb]

Goldy, that's fabulous news.  Please keep us posted about how you are doing.  It shows that we are all different.

I wish you all the luck in the world.

Take care.

Love

Becca
x

 

[Olis]

Hello I'm new to the site and have been reading everything to try and catch up! Therefore I apologise that I am responding to this over a month after it was posted.

I have endo severely. It is on my bowel and I get a period and cramps in my bowel every month also. My bowel is attached to my womb so I can't have any of the lesions removed. I had two cysts, one on each ovary which were drained.

However, you said you wanted a success story so I started to exercise, cut out alcohol and drank more water and started acupuncture. All of which resulted in the symptoms reducing dramatically. After 5 years of TTC and on the 3rd cycle of IVF (including steriods and aspirin) I got pregnant and now have a 20 month old son. So you can succeed with endo!

I'm just about to try again with some frozen but unfortunately the symptoms have come back (I thought pregnancy and breast-feeding were meant to help??).........................

Good luck with your future attempts. 

 

[Alice M]

Hi everyone...

I just spotted this thread, and thought you might like to hear a success story... (it's a long one!)
I was extremely fortunate (especially with hindsight) to get pg naturally with my daughter 5 years ago (but it did take a year..). The problems started when we decided to try for number 2 - I discovered through many visits to the doctor and gynae that I had level 4 endo, with plenty on my bowel and a large endometrioma in my right ovary. This was removed, but then one of my tubes had become blocked, and the other prone to spasm. Also, with FSH levels rising, I decided to go straight for IVF with ICSI (the old sperm count wasn't too hot either).... the first attempt was a disaster - on the short protocol with almost the maximum dose of stims my clinic will allow, I had no response at all to the drugs..... amazingly, they let me have another go (FSH levels came down again), and this time I had some response..... I produced the princely sum of one egg (from 2 follies), and that came from the ovary which had had the endometrioma - seems like my left, and seemingly okay ovary might be a dud.... well, miraculously, the egg fertilized and then stuck and I now have my beautiful son Barnaby.....

I did do a few things to help myself, and I'm sure these affected the outcome, so I really recommend taking similar action... firstly, I drastically changed my diet. I read a book called: Endometriosis, A key to healing through nutrition by Dian Shepperson Mills and Michael Vernon, published by Element books 1999. This suggested giving up wheat and dairy, which I did for several months before my IVF, and then I added plenty of protein to my diet in the weeks before the IVF (supposedly good for making eggs), and I had already given up caffeine and alcohol many months or even years before!!  I also went to acupuncture.... whether these things helped me physically, I don't know, but the fact that I was doing something proactive to help myself made me feel like I had a bit more control over the situation, which really helped me psychologically - and your mental state certainly affects everything.... it's so worth making some changes to your life and looking at your whole life, diet, and everything.....

So - miracles do happen - and endo doesn't necessarily prevent pregnancies - so don't let anyone make you believe it does! I think one of the most important things is to believe in yourself - and I know this is SO hard to do, but it does help - I think my acupuncturist really helped me most of all when he said that he believed I could get pregnant again - especially in the face of all the specialists who tutted and told me my ovaries were 'buggered' (yup, my specialist really said that).....

Sorry - I've waffled on a bit.... but I just want to say a big GOOD LUCK to everyone and remember that dreams can come true
...

Cheers
love
Alice
xxxxxx

 

[Mish3434]

Another positive story

I have stage 4 endo, on my bowel, bladder, pod and ovaries which are attached to the rear of my womb.  I have ovarian chocolate cysts which have been removed and grown back.  My gynae advised me not to waste NHS money and time on IVF as it wouldn't work  .

I got lucky on my first attempt at IVF, and I now have a 4 week old daughter

good luck to all, never give up hope

Love Shelley xx

 

[Reb]

Mish, S and Alive,

Thank you for your stories.  I was soooo pleased to read them.  Take care now.

Love

Becca
x

 

[Guest]

This is a very reassuring post as I too have stage 4 endo and on my bowel.  I had been having a period from my bowel for a couple of years before I actually did anything about it as I thought I had some sort of bowel condition.  Luckily a colonoscopy ruled out any bowel complaints but a laparoscopy confirmed it was endo.  Its horrible having to wear extra long maternity towels each month to catch the blood from the front and back door and the pain is unbearable.

I've just had an ivf cancelled due to an endometrioma they have found inside my right ovary so now I'm going to have to have another lap to get rid of it.  I've decided to give the ivf a break until April next year as its very costly in Adelaide.

Good luck with your ivf.

Michelle

 

[Frankie B]

Hi

Good to read so many positive posts! I too have read the book, my only problem is I love toast so I've tried to cut down on the old wheat drink caffeine free tea, and eat lots of fruit and veg.

Michelle I'm sorry they have had to cancel IVF this time, I hope your lap goes well and good luck for April.

xxx

 

[Reb]

Michelle, I'm so sorry your tx was cancelled.  It's sounds like you have gone through hell.  I hope they can tx your bowel endo at the same time as your endo cyst.

You take care.  It's sounds like you are doing the right thing taking a break.  Blowing you loads of  .

Love

Becca
x

 

[Guest]

And to top it all, I returned to work after my cancelled ivf only to be unfairly dismissed!  So now I have no job too!  And an unpleasant time having to go to the Industrial Relations Tribunal to prove that I was unfairly dismissed on 7 Nov.    Well I hope that I am now at rock bottom and the only way is up!!  Have to keep positive. 

My appt with the Gynae has come through for the 3 November so I will know whats happening then!

And I may have another job in the pipeline - had to do a psych test today for this new role and boy was that hard!    Have my second interview tomorrow!
I'll keep you all posted.

Michelle