result!

1 year after my laparoscopy the pains have returned, the stomach swelling, sore sex, tiredness to, I have just had enough now, so back to the doctors i went, luckily it was a female, explained exactly how i felt, and how it was all same symptoms as before, result shes put me in for a fast track appointment back at the gynacology ward, .... now my heads starting to think back to when i had my laparoscopy and the doctor had came to my bedside and explained that if this come back because of its severness i would have to get my womb etc removed...after all my reaserch im now sure it wont make a diff, im only 32 and away to get married, we would love a child, im just so worried and confused :(

got my app thru...ment to be fast track...12th jan...still its another journey ive got to take,

i never knew much abt this disase but since finding this page ive learnt so much and can now understand it alot better thanks to you all for all the help

kerry xx

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  • Hi.... From what I've been reading the key to get endo under control is to have excision and not laser treatment as this only burns of the surface.

    Altho I don't think theres many surgeons that do this type of surgery..

    I would google it and see if any one in your area does this..

    Definitely worth a try if you want to have children.

    Hysterectomy is not a cure so this should be your last resort.

    Best of luck xx

  • hey jewels thanks for the advice ill go look up google now, thankyou xx

  • Hi, this post is relating to excision surgery and thought it might be helpful for those considering it.

    I had stage 4 endo - everywhere; bowel, bladder, ovaries , pouch of douglas, diaphragm. After my first lap, consultant (gynae) said I was a complete mess and needed a hysterectomy and oophrectomy and booked me in for op in two weeks.

    I did some research in that time and became increasingly discomforted that this was my answer. I am not a medic but could not see that having an oophrectomy to to put me into menopause to help prevent endo was the answer being that I would then be put on HRT to prevent my bones from deteriorating etc. This person was not an excision surgeon so I would not have been endo free.

    I learnt that you need to bear in mind that the advice you get is sometimes relative to that person's expertise. Usually that person is doing their very best for you within their capacity.

    I challenged my gynae consultant and mentioned exision surgery and said I would prefer a referral to someone who specialised in this. She said "oh yes, I only do minor excision myself and refer such advanced cases as yours to someone else" - when clearly if I had areed to the hyster and ooph she would not have even mentioned this option to me!

    I mentioned the surgeon that I had found and she said she knew of him but said he was "a bit full of himself" and tried to refer me to a chummy colleague of hers at the local hospital who she said "would look after me". When I looked him up he had nowhere near the kind of experience with endo as the person I had found. I am still angry to this day with her and should have made a complaint.

    However, I got to see the guy I found who is a fantastic and dedicated endo surgeon (not sure if I am allowed to mention his name but feel free to email me if you want details). Unfortunately, unless private, he is unable to take patients outside of his catchment area on nhs (S. Yorkshire). I travelled up from London.

    I had radical excision surgery early January. This is where the whole lining of your endometrium is removed, rather than just patches of seen endo. The whole peritoneoum heals without scarring that way and seen and unseen endo is removed. I also had temporary suspension of my ovaries following removal of endometriomas (cyst) which prevented my ovaries from creating adhesions. I have read often of surgeons, particularly general gynae who say "oh you might as well have your ovaries removed as ,following surgery to remove cysts ,they generally create adhesions". Not so if you have a surgeon who knows how to prevent it.

    The operation lasted 8 hours and was all done by lap and a small incision in the top of the vagina to access pouch of douglas. I felt rough from such a long anaesthetic but the operation itself was not particularly painful and I was up walking around the next day and home very quickly.

    He was not able to remove all in the pouch without doing a hysterectomy (which I had declined so that is down to me) but I can honestly say that I have lead a normal existence since. and manage to forget that I had such awful debilitating pain.

    I had felt totally hopeless and in despair at one time, particularly with the unsatisfactory treatments that were in offer which all seemed to have side effects or trade offer) but hope this will show that there is hope. Research has shown that radical excision has the best long term results.

    It is quite tragic that there are too few surgeons who are skilled at radical excision.

    I know with this "thing" as I call it, there is no knowing if or when it might re-appear but I would not hesitate to go for radical excision again.

    All best wishes and love to all who suffer with this "thing".

  • Hiya I am new to this , but a lot of endo suffers are changing diets to controll hormons and swelling..lots of links for the endo diet on internet or on my page..but wheat and red meat or going vegan has cured a lot of women........I have just given up wheat and stoped reflexology as that makes me come on xx

  • thanks everyone, youve made me feel like im not alone anymore, its nice to see there is advice at hand,

    althought the doctors gave me non i had to do all research myself, which is shocking, xx

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