Endometriosis UK
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just found out i have stage 4 endo and its attached to my bowel and fallopian tube also my ovary.

ive got hospital on friday to discover what consultant choses to do with me!! when i came round from my lap all he said was your coverd in stage 4 endemetriosis and your bowels stuck but dont worry youll be coming back we will get bowel separated and remove ovary and fallopian tube and then get u on injections. im baffled with all this and in so much pain right now i would be grateful if any one has went through this.The way i feel i would really hope for hysterectomy as ive managed to have 2 sons and been sterlized for 10 years so feel now i would rather they just take the lot away and save me from all this pain and terrible mood swings. thanxs in advance for your help x

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Hello Sharon,

I had pretty much the same thing after my first lap and in my second they managed to remove it from around my bowel and separate all of my organs from my abdominal wall and bits were attached to the lining of my hip etc. I am only 21 so haven't had any children and so I just have to keep having laps to get rid of it from my ovary, tubes and everywhere else.

In regards to the injections I had six months worth of Zoladex which is the maximum amount you can have, it personally didn't help me but it should stop it from re growing as quickly.

My advice would be to save yourself the hassle, if you have had children and are happy to not have any more then I would go for the hysterectomy, it doesn't always get rid of endo but in most cases it does and even when it doesn't get rid of it, it makes it considerably better.

I hope that helps :)

Heather x

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Hi Heather have you been able to have any children??

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thanxs so much for your reply.To be honest im baffled with all this and am grateful for your response. ill post on friday and let you know what there plans for me are and thanxs again. sharon x

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Hi

I am so sorry you are in so much pain :(

I had a hyst and BSO about 11 years ago. I have 2 boys and was suffering 24/7. I don't regret my decision because although I still suffer it is nowhere near as bad as before the op.

I would suggest that you do look at all options first before making your decision. Hang in there I am sure you will get some relief soon.

Regards

Julie

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I had virtually the same as you but no tube/ovary removal. I had it done at my first lap. Been better because of removal. No bowel cramps anymore either which is wonderful! Still some days of pain but much more bearable. Hope you find a way forward. X

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thank you for replying. the doc says he never done anything when he done my lap as it was a mess so heres hoping they can put me in the picture on friday. x

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Hi Sharon. I had my lap just over a week ago. I had the endo they could see cut out or burnt. Apparently endo is like an iceberg, they can only treat what they see externally, all the internal endo they can't get to, so my gynaey suggested a mirena coil. Apparently it helps keep the endo minimal, stops heavy bleeding, which I suffer with when I'm on my period, also as a bonus, it's a very, very effective contraception. It's not unusual for the surgeon not to do anything after a lap. A woman in recovery near me had her surgeon come and talk to her after her lap, he told her that her womb was so full of large fibroids, that it wasn't worth him doing anything, she needed to have a hysterectomy. If your gynaey hasn't mentioned a hysterectomy to you, then you obviously don't need one. Ask him about the mirena coil though.

All the best.

Lisa xx

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I would think very carefully before having a hysterectomy and if you do remove yr ovaries too. I had a hyst 4 years ago and am in agony again. Waiting to see consultant again now. I also have been bleeding from behind on and off for a while and lately solidly for 2 weeks getting worse. Am having a camera on the 9th. GP reckons its piles but my health care friend thinks its way too much blood for that. Could it be Endo on the bowel????

Bottom line is there is no cure for Endo and a hysterectomy sure isn't either good luck it's a battle we will fight together xxxxx

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Hi Sharon

I'm sorry you are suffering, but it does sound as if the consultant is confident that he will be able to sort you out. I appreciate that you've had enough with all of the going backwards and forwards, but as Lizzie has just testified - although there are exceptions, as a rule hysterectomy DOES NOT CURE endometriosis.

As you're not planning on having any more children, steer clear of any more surgery after this next operation to sort you out if you possibly can. Every time surgery is performed scar tissue is left behind; endo loves scar tissue so having repeated laps is just giving it exactly what it wants.

Also, with regard to the Zoladex injections - everybody reacts to it differently, but I personally have always found that six months here and there has been a Godsend for me. Generally speaking they only like to give you 6 months worth before a break, but I have known women be on it non stop for years with no adverse effects; your consultant will decide what's best for you.

Good luck, and I hope they manage to find a treatment plan that works for you :)

C x

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I have pretty much the same. After a laparoscopy it was found that my bowels had twisted and stuck to the wrong side, my ovaries and fallopian tubes were stuck down and best advice was to have a partial hysterectomy. What should have been an hour and a half operation turned out to be 8 and a half hours. I was so stuck with scar tissue that they had no option but to do a full hysterectomy and remove 23% of my bowels. I wasn't given any advice on how to deal with endo, or told if it would return, only on how to cope with the menopause. That was 5 years ago and since then I still have pain, but when I visit the doctor they say I shouldn't and just give me painkillers. I am lucky to have 2 children so having a full hysterectomy didn't worry me too much but I would advise to research every option going first and not rely just on doctors opinions.

I wish you all the best in whatever route you take and wish you find some relief from all the pain xxxxx

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Sorry ur in so much pain hope ur getting rest and good luck for firday x

I had lap done Monday my gyne didn't tell me much apart from he remove endo and said he got c me in 8 weeks to go though things and look at pictures he wouldn't tell were I had it or what stage I am so I gotta wait 8 weeks now x

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Thanxs ladies for your comments. I am gratefull for all your feed back on this as i really dont know whats best as this is all new too me but reading up on this i do believe ive had this for many years and just thought this was all normal. Im 38 now and from when i was 16 i sufferd terrible pain and they took out my appendix at the age of 19 then i was under investigation as i couldnt fall pregnant and was due to go in for a lap when i discoverd i was pregnant.Then they put me on fybogel sachets to drink as they then thought i wasnt getting enough fibre. so with all this in the last 20 years im now realizing this isnt normal and just glad really that now i know whats wrong and it explains why im a horror 2 weeks of every month lol x

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Hi

I'm glad for you that you have a diagnosis. Sorry it's been so painful - is it the post gas pain or the abdo pain - rough whichever. My gas pains lasted 2-3 days and pain control didn't help though walking around did...

I think some of your diagnosis sounds similar to mine, so will share a little of my experience in case it helps...

Since I was 18 I had bowel symptoms, being told variously I had internal piles, consipation, irritable bowel disease. I had few gynae symptoms though did have a bloody discharge for 6 days before every period started properly and have heavy periods - I am iron deficient and without supplements become anaemic. It was the discharge which took me to the doctor, but it was investigated and I was told it's just one of those things on a couple of occasions.

I was diagnosed via hysteroscopy, MRI scan, ca125 of 77, ovarian ultrasound and barium enema between March and early July. I had lap. surgery last week for a rectovaginal node, endometriosis on the uterus (left side), bladder (left side) and some on the bowel (not seen til they were doing the laparoscopy) and an endometrioma on the left ovary with adhesions to bowel and the uterus. It was quite a mess I think.

The surgeon said (i think - I was groggy!) that he lasered the endometriosis from the uterus, bladder and the bowel, dissected the adhesions and removed the lleft ovary and left tube (I'm 44 with 2 kids, not wanting more) and dissected and removed the rectovaginal node. So far post op I am lower abdo pain free except some bowel discomfort when I need to go to the loo! I am not sure if I need the post op hormones - I see the consultant again next week when I will learn more - it's all based on the suspected cause of the endo I think.

Given my age and no further desire for pregnancy, I had been saying to a friend who had a hystersectomy that I would just get them to take everything away - but she had many ideas why this was a bad idea - the doctors too also took this view - saying they would only take the uterus out if it was indicated and for the endometriosis I have it isn't usually indicated.

Good luck with your journey - mine (so far) involved a lot of questions and I found loads of good info on this site as well as reading the Royal College of Obs and Gynaecologists guidelines on endo.

Best wishes xx

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hi thanxs for sharing that with me. Im now thinking with every 1s feed back i should just wait till friday and see what my consultant says and not rush in shouting i want a hysterectomy think i was thinking that was the easy route just to have it all away but now listening to people with experiance on this think ill just wait and see whats to be done. thanxs every 1 for getting back to me. This is a great site and is giving me so much needed information x.

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hi, i had my endo operation in March, about 14cm, thereafter been going through the monthly lucrin depot injection.. my gyne suggested to take it for long term till i get married and then try to get pregnant as soon. Was actually in shock when i was treated with endo, as I was not in much menses pain, went to check when i could actually feel the swollen, and been told that it grows very fast (14cm), hence decided to go for op the very next day. Hope everyone is doing good now.

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Definitely don't rush in asking for a hyst - as others have said, it's not a cure although some gynaes will tell you otherwise. If endo is outside the womb, I'm not sure why they think removing the womb would cure it. Obviously you can have your ovaries removed too, but someone women's endo still comes back (sometimes with HRT but sometimes just on its own) and then it's much much more difficult to treat, or to get the doctors to take you seriously

If you start zoladex, it will put you in a very similar state to if your ovaries had been removed but if it doesn't work you can stop it, plus it doesn't cause adhesions so for thes reasons it's much wiser to try it first. Zoladex is only licensed for 6 months but I stayed on it for two years as it was so helpful at first - I do still have some side effects 3 years after stopping which I should really get some help for.

Although I agree that avoiding laps wherever possible is a good idea, it sounds like you may need the next op to prevent longterm damage to your bowel, ovaries and tubes which can all become twisted. As your endo sounds very complex, I would recommend asking for a referral to an endo specialist, such as the te in Oxford as you want the best possible surgeon working on you - making sure they remove every last implant from you is very important,

Most of us had to wait a long time for a diagnosis but you're over double the average - I hope the treatment you gets finally helps you. If I'd been in this much pain without any treatment or. Diagnosis until now I'd have gone insane! I have everything crossed for you x

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thanxs for your reply and advice. well at my last appointment gynae said he is going to remove my ovaries and fallopian tubes and get bowel surgeon to separate the bowel.He has put me on deceptyl injections ive had 2 already and to get another 1 on 21st of this month when i go back to him and then he will let me know when ops taken place well thats what im hoping. these injections were great for 1st 1 but not helping now and after first 1 i bled for 16 days which was a bit of a nightmare but was pain free now bleedings stopped ive now got the terrible pain back in my back arghhh.cant win lol x

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Sorry. Morphine + iPhone = nonsense! Hope you can get the gist.

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Hi I now how you feel I too have stage four endrometriosis and bowel stuck to my womb, I'm booked in for full removal of the womb and ovaries, and trying to separate my bowel from my womb, I'm so scared as I was told its a slight chance I could end up with a bag, I no it's a slight chance but I said to the gyno I was scared and he said me too, which didn't help, but I won't no till they do this if I will have the bag. My husband and I have not been able to have children due to his low sperm count and my blocked tube, plus my fibroid, the other issue I have is I have level three disc disease, and am disabled due to this so he's worried about me being on the table for a long time, then I will have to stay in for four or more days. They say it should be around April 1213 if you get yours done first could you let me no how you get on many thanks Natalie

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Hi

I was diagnosed with stage 4 endometriosis just after my 18th birthday and had surgry a week later.... my bowel was wedged in the middle of my ovaries , it was honestly a mess my gynae was also surprised to find that in an 18 year old body... none the less he was able to separate them and eliminate as much endometrium growing and belive it was EVERYWHERE...he told me afterwards that I may be infertile due to the extent of the endom....but he said we will only know for sure once I try having a child but thats a long way from now but it does scare me that there is that possibility..... I was put on vissane tablets that temporarily stopped my period which was amazing I was not in pain for a good 6 months ... but now im off the treatment and my period is back and welll it stilll hurts really bad and I still cant do much when im on my period but its waaay better...I dont have to go for an injection every day anymore while on my period. Im seeing my gyne this week and I find out if I have to go back in to remove anymore.....

Honestly I am scared....18 and I already have to wonder if I may have kids .....

But reading alll your stories made me feel like im not alone .... and it doesnt help that im from a country which is not as understanding to my disease yet....

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