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Thread: Newbie with Stage 5 Endo incl. Bowel

  1. #1
    Rainbow Guest

    Unhappy Newbie with Stage 5 Endo incl. Bowel

    Hi all,
    I just found this forum. I had my first lap less than a week ago and my doc said it was stage 5 and one of the worst cases he has ever seen. I have direct bowel involvement so I will be meeting with him again soon to discuss further surgery.
    I'm 28 and have been suffering my whole menstruating life but have been brushed off by GPs. Finally I know better, I just hope it's not too late in terms of kiddies, hubby and I were almost ready to TTC when the endo was brought to light.
    Would love to chat with other Endo ladies.


  2. #2

    Join Date
    Feb 2005
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    Hi there,

    I had a similar history to you. I am glad that you have been diagnosed now and that treatment will soon start as it will make all the difference. You will also notice that your cycles are hopefully much more pleasant with the endo removed. I had endo on the bowel too and always found my periods very difficult to handle, physically.

    Mine was diagnosed late (36) after trying for several years to conceive. Within six months of the endo being removed, we had started IVF and our baby was on the way. You may find that once the endo is brought under control, you have a very good chance of conceiving. Good luck and let us know how you go.

  3. #3

    Default

    Hi there and welcome to BB..

    i too like Melbo, have had severe endo. I had 3 major ops last year to clear it. I would highly recommend you start seeing a ECCA surgeon. One that is totally up to date and aware of the new techniques used to remove the endo. I can't voice this enough as the old way of removing endo via 'burning' is pointless and it just returns. However ECCA surgeons now use the 'iceberg' technique where it is cut out, not burnt reducing the risk of it returning greatly.

    I had part of my bladder and 20 cm of bowel removed. Thankfully my wonderful surgeons did such a fantastic job i no longer have any pain, and have very minimal scaring. My life has done a full turn, and I will be forever grateful for their handy work!

    I would recommend that you check out the ECCA website. They have a clinic in Melbourne, I used ECCA in sydney, Dr Michael Cooper, and he has had great succes with his ladies and their pregnancy outcomes 'naturally' after surgery. He recently stared on chanel 9s RPA tv show. There are a lot of ladies on the forum who have had severe endo and have fallen pregnant. Some with assisted conception, some naturally.. Wishing all the best and good luck..

    Leis x

  4. #4

    Join Date
    Sep 2006
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    Hi ladies! :hugs:

    Firemansgirl - I didn't know about this ECCA, but thanks to this post, I can look that up if I ever have issues again.

    Rainbow - My story (will try and keep in short) - had issues most of my menstrual life also (started at the ripe at of 11 - lucky me). March 2002 had first Laproscopy & endo removed (aged 28), constant pain afterwards, just ignored it - took drugs etc to cope. Sept 2002 another operation as the pain was just getting so bad that I couldn't work/function etc. Found out that I had small amount of endo return, but very bad adhesions (scare tissue). Uterus attached to pouch of douglas and left ovary fully stuck together. They used the new spray gel that had just come in from US and burning technique as Firemansgirl has mentioned previously.

    Still major pain, sort second opinion and found after many, many expensive tests I needed a 3rd laproscopy come Dec 2002. Found I was allergic to spray gel, size 50 cent piece abscese where uterus has been "unstuck" from pouch of douglas and left ovary still stuck to bowels!!

    All removed again, via burning. Still had issues for another 6 months before I was admitted to hospital in June 2003, yet another laproscopy, yet more adhesions (no endo) removed, unstuck etc, and a whole lot of med's pumped into me for a couple of days to try and prevent this from re-occurring all the time.

    I was told the only way to cure me was to have a baby. It took us about 3 months to conceive my first DS, now 2 and half years old. I haven't had any issues with adhesions or endo since and it took no time at all to conceive that last 2 times (lost one this time last year - unrelated condition). My DH just has to look at me now without a condom on, and I'm pregnant.

    I know it's a long winded story, but I wanted you to know that even though you have bad endo and on the bowel etc, all of my 3 pregnancies have been conceived via my left ovary which was stuck to either my uterus or bowels for over 12 months straight and it still works wonders!

    I feel very lucky to have my babies, even when DS is a handful. I wanted to you know that there are others out there who have been in a similar situation and gone on to have babies. But I also believe as I was 29 when I conceived DS that was in my favour.

    As you are 28 - same age I was when I went down that horrible path in my life, that you have a VERY good chance of getting through this and with babies at the other end.

    Look in to the different forms of surgery as Firemansgirl has suggested because the burning option leaves you with an open wound inside after they sow you up, that often sticks and causes bad scarring and hence leaves you with other issues to contend with other than the disease itself.

    Take care, good luck and let me know how you go.

  5. #5

    Join Date
    Nov 2005
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    Sydney
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    Hi Rainbow ,

    I also have Endo ...but never had any real symtoms. By the time they discovered I had it ( after 10months trying to conceive)One of my tubes had already completely sealed over . Anyway they removed all they could see due to only one tube , endo and DH's low sperm count they suggested we do IVF. However DH and I though we would try insemination first. Well miracle of all miracles ..we feel pregnant on our own before our next cycle could start for the inseminatioN!. I swear my specialist could seriously not believe it!.

    So it can happen ....and I hope it happens of all us endo girls!

  6. #6

    Join Date
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    Hi Rainbow,
    It sux about the endo, but it's great that it's been diagnosed and you can start treatment soon.
    I was TTC for over 2 1/2 years before i was diganosed with endo and although the doc said it was pretty bad (the photos he gave me afterwards are graphic!), he said that there are some women with it all the way up to their lungs!
    It's nowhere near to late hun! You've got loads of great options for kids in the future.
    Good luck with your treatment

  7. #7

    Default

    I had bad endo crushing my left ovary and wrapped around my main arteries they still can't remove and nearly killed me trying to. Once it is all removed they can give you a blood test to check your fertility and usually give you 6 months of naturally trying before getting your partner tested and then going from there based on the information. That was how my dr was going to handle it anyway. I got preg naturally without really tryin in 2 months, dr said endo isn't really too bad when it comes to fertility issues its more PCOS that can cause probs.

  8. #8
    ~Jane~ Guest

    Default

    Hi rainbow

    I am also in melbourne and an endo sufferer, just wondering who your surgeon is?

    Cheers

    Jane

  9. #9
    Rainbow Guest

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    Pls email me

  10. #10
    ~Jane~ Guest

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    have emailed you, look forward to hearing from you

  11. #11

    Join Date
    Aug 2006
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    N.S.W
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    Hi Rainbow,

    Glad to hear that you have been diagnosed as this is a huge step in the right direction. I along with the other ladies suffered with endo most my life. I had no less than six laps and it wasn't until I saw Dr. Cooper in Sydney (same as firemansgirl) last year that my endo was treated correctly. It was attached to my bowel, kidney tube, pouch of douglas, uthrer (sp?), vagina, rectum ....i think that's all

    Anyhow I long story short.......it was the best thing I've ever done as two months later I was pregnant......The reason I searched for an alternative which resulted in me seeing Cooper was that two other specialist had told me they couldn't fix it and strong / horrible drugs were my only option....or a hysterectomy

    So glad that I saw a ECCA doctor.

    I wish you the very best of luck with your surgery and make sure you keep us posted as hope you join the evergrowing list on sucessful endo stories.

    Cindy

  12. #12
    Rainbow Guest

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    Thank you so so much everyone, your support means a lot to me.
    It's been 2 weeks since my lap and so far I don't really feel any better.
    But the work isn't quite finished yet. So we'll see.

  13. #13

    Join Date
    Sep 2006
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    Hi Rainbow,

    I know it's only been two weeks but just remember how much that actually do on the inside. I took a bit to recover and you're sore for a while considering that on the outside it doesn't look like yuo've had anything done at all.

    Just keep resting as much as possible and you'll hopefully notice some improvement soon.

    Take care.

  14. #14
    Nikstar Guest

    Default Newbie with stage 5 endo

    Hi Newbie,

    I have stage 4 endo, but found it to be really emotionally draining. I have had 4 operations in a year and had it all around my bowel and bladder. I have now noticed, after having 2 recent operations that the pain is still there around that time of month when I need to go to the bathroom. Is this what you experience? How do you combat the pain? Its so disheartening to go through the ops and still have pain. Does anyone have any suggestions as to how to manage this? I am at a loss as to what to do. For the record too, I love this website, its like I can chat to people who know exactly the frustrations we go through. Its an awful thing to go through.

  15. #15
    Rainbow Guest

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    Hi Nikstar,

    I know what you mean about endo being emotionally draining. Not to mention physically draining, financially draining, etc etc!

    4 ops in a year - wow! Yuck. I will have had two ops by the time this year is through. Hopefully no more in a hurry!

    Apparently my bladder is clear but my bowel is a mess. However, I still get pain on emptying my bladder when it's my time of the month, and I also occasionally get bladder frequency. As for my bowels, they are never much fun, but during my period they can be a bit of a nightmare. Pain, irregularity, etc...

    The only thing I know how to do to deal with the pain, is take painkillers and remind myself I have surgery coming up! Thankfully I am pretty much always at home so that makes the bowel stuff easier to deal with.

    I can't imagine how shattered I would be if I go through my op and still have issues afterwards! I guess if that happened I would put myself on a strict diet and get alternative therapy.

    All the best!!

  16. #16
    Louisa L Guest

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    Hi girls,
    Was wondering if anyone can help. I am wanting to know if any of you experience moderate to intense pain after an orgasim. I have had this problem (only occasionally) for about 6 years, and my gyno said it is probably from my endo. It has worried me a bit in the past, but it is really worrying me today, as last nigt I had the pain again and I am 51/2 wks pregnant. Can this hurt the baby?
    Yes....I feel niave, but if any one could shed some light, I would really appreciated it.
    Lou

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