Diagnosed endo and adhesions : Hi I'm new... - Endometriosis UK

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Diagnosed endo and adhesions


Hi I'm new to this, I had a lap last Monday when I came round I remember the surgeon telling me I was in 4 a major op, and that my lap had to b abandoned, didn't really tell me much more, had to make an emergency appointment with gyny clinic last Tuesday coz was in so much pain, she told me my bowel was stuck to everything but but didn't really give me anything else, I don't haven't follow up app till 18th august, any advice

19 Replies

Hi there, 18 Aug?

It certainly sounds like somebody should have explained a he'll of a lot more to you than just saying you need a major operation, I would go in on monday and ask them to explain everything properly, good luck

Thanks curly, when I went to the emergency gyny clinic and was told it was a mess she said she didn't really want to interfere and to wait till I c my consultant on the 18th oct. I actually wish that I hadn't gone to the gyny clinic because she really made me worry more than I was b4 x

Hey. I'm in a similar position to yourself.

I had a laparoscopy end of January this year, I came around and all they said at my beside as they removed what endometriosis that they could, and checked if my tubes were patent which they were. But it wasn't until two days after my discharge I received a voicemail (on a Friday evening 6.30 ish) all they said "hi I'm a doctor at the royal oldham, please can you get in touch with your consultants secretary ASAP on Monday morning" as you can imagine I was worried that my biopsies had come back. After a long weekend with no one to speak to regards this voicemail. The secretary proceeded to tell me that there was much more endo and adhesions stuck to my bowel, and my rectum was stuck to my uteral sacral ligament. Therefore I would need further surgery when I had healed. 9 months later still in pain, and no one seems to want to operate, passed from gynae to colorectal :( so really I guess what I'm trying to say is be firm with them, demand answers. I'm waiting a second opinion a re referral as I'm no better off that I was before.

Good luck and take no prisoners it's your health at the end of the day. All the best xx

I will b demanding answers, my aunty went through this but hers got so bad 1 of hers tubes exploded, she is coming with me to my appointment so they don't fob me off, the laparoscopy had to b abandoned because he couldn't get in because of the adhesions he couldn't even c my ovaries or my tubes so it's making me think how bad it actually is, I'm still in loads of pain after my abandoned lap, got 7 stitches in my belly button, thanks very much 4 ur reply, I'm so glad I found this site, and also have my aunty to discuss things with x

Hi Keepy123

Many women go in for a laparoscopy only for their consultant to find that the endo is far beyond the scope of such a 'small' operation, and that they will need to open you up properly to deal with it. Usually when this happens, the endo is sticking all of your organs together, which is why it needs more than just a gynae to deal with it. A gynaecologist specialises in gynaecology, colo-rectal surgeons specialise in simple terms with your bowel, and if your bladder and urinary tract is also involved, they'll need a genito-urinary surgeon on hand. And on top of that, they'll need theatre nurses specialising in all of those areas.

They're not fobbing you off or making you hang around for the fun of it, they're trying to arrange a time when all of those people can be in the theatre at the same time to give you the best possible care. You wouldn't get a plumber in at home to deal with an electricity problem, would you?

I know it sounds scary, but it's really 'just' a case of getting the right people in for the job. They're looking after you, and I bet by the time your follow up appointment comes around they'll have more information, and a plan :)

Good luck

C x

It does sound very scary, I will b glad when the 18th oct comes around so I can find out what there plan of action will b, I'm 34 years old and have 2 children already and been told it will b near enough impossible to conceive again x

I didn't actually understand what she meant by my bowel is stuck to everything

Hi im sorry to hear you'll need a big op, I'm having big op soon but mine is to remove tubes which are stuck to ovarie and it was mentioned that was also stuck to bowel but as they haven't discussed this since my lap I have assumed it's not a big issue. I was told I'd need big op when I woke from lap at the biggining of year like you so was in shock and have done lots of research and asked questions about it all as I had 3 months before my follow up and was left feeling very confused by it all. So although it sounds like the bowl being stuck is your issue I wanted to explain the sticking together! So basically from what I've learnt as the endo bleads each month this irratates your pelvis area and like when you cut yourself your body creates a scab to heal it, inside scar tissue is created in response to healing the wound which is the endo. So every month this happens and the scar tissue keeps growing which becomes like spiders webs sticking organs together. These are called adhesions and can cause a lot of problems because your organs can't move freely. Pid and previous surgery can also create adhessions so unfortunately having surgery will hopefully help but may cause more scar tissue. However there are barrier fluids etc they can use to try to stop it. I hope I've managed to explainand although my endo was classed as mild it's the adhessions that are my issue so I'm hoping that this big op will achieve some pain relief as my doc believes it should. Good luck with the next appointment and write down any questions ready to ask. Also if you want to read more just Google adhessions and you should find lots of info. X

Keepy123 in reply to lillyflower

Thank u very much, I will look in2 it, I think it's just the not knowing, they just said big op, I just don't know what x

Yes the not knowing drove me nuts so I googled everything!! Big op is exactly what I was told. Basically they mean laparotomy which is open surgery ratherthan laparoscopy which is what you've had with only a small incission. So big op just means they need to open you up to see what they're doing I was told because of all the adhessions they need to seperate everything then remove tubes and they won't be able to see by lap. Therefore it's not about what they're doing just about how they cut you. Hope that makes more sense, and I hope you get some proper answers at your follow up soon x

Thank u that has helped a lot, I know it will b open surgery coz I was told they can't get the cameras in, so it's just a case of waiting now to find out, thanks a lot 4 ur replies x

Oh I was also told I could end up with a bag, which was really scary x

I think they have to tell you what might happen and even if it does it's generally temparary, it also depends how bad your symptoms are as to how you feel about surgery too. It's almost 8 months since I was told I needed big op to actually having it so there's lots of time to ask questions and make sure you are happy with what they plan to do. I hope they explain it all and clarify exactly what there plans are. There are many people in here that have had op on bowel so once you know if you want more info or advice I'm sure you will get more help.

Thank u very much, it's the not knowing that's the worst of it, there plan was to go in and zap all the endo but then had to abandon coz couldn't even get the camera in, once I know what's going on it will put my mind at ease, then atleast I know what is coming up, didn't know there was any sites like this to talk to people going through the same, I found this site by accident and it has really been a help x

Hi - my case sounds similar to yours. I had a lap in Apr and was told my bowel was stuck to the pelvic wall, she couldn't see my tubes and ovaries and also had adhesions in the ureter area. Anyway on coming round after the op she advised I'd need major surgery and not much else was said. However since then I've been referred to a colorectal surgeon and urologist and since Apr they have all been working with my gynae to complete further investigations in order to plan the laparotomy and resection surgery which is planned for Nov. Once you see your consultant it's likely they will start the process of determining just what is going on and how best to treat and fix it... Wait to spk to your consultant and I'm sure your questions will be answered. My gynae and surgeons have all been really good-answered all my questions and given me all the info I need. It's been a hard few months and I have more to go through but I trust my surgeons and look fwd to a pain free future. I really hope that everything works out for you xx

Thank u so much 4 ur replies everyone, and drakesie I think it just the not knowing that's the worst thing, and when I went to emergency gyny clinic she said she didn't want to interfere and she wanted to leave it to my consultant, she also told me I'd I chose the excision surgery I would have to consent to a hysterectomy b4 theatre coz she said its bad she just doesn't know how bad until they actually get in, does anyone know how long I'm looking at 4 the op x

There will be discussion before op and so it's hard to guess but I had lap in march, agreed to op in august and then got letter to call and book. I could have done it a bit sooner but because of work I chose to be off over Xmas so delayed it a bit, and it's now booked for November 29th. I was originally told it would be within the 16 weeks. So if you wanted to delay it you can as open surgery you would need at least 6-8 weeks recovery and could be longer, so you can choose when your ready. Different hospital may vary in waiting times but I'd guess at least a few months. I'm glad you're finding this site helpful, I know I have had a lot of support on here andgot some great advice too x

Thank u very much, good luck with ur operation x

How are you today? I hope you all resolved.

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