I've found that a lot of people on this site would advise a laparoscopy. I know everyone is different, but I've heard of people still having pain after a lap, or getting worse pain. And people have suggested to go with a specialist.
I haven't even been diagnosed properly with endo, because I haven't had a lap. My gynaecologist told me not to have one, but I've decided I want to at least get this thing properly diagnosed, so then I can do something about it. I don't just want to cover up the problem with tablets.
So I'm going to my gp on Monday to get his opinion on it and I will be asking him loads of questions. The uncertainty of things worry me, and if something is inevitable, I'd rather know and have time to mentally prepare myself. I hope I'm not put off by any replies I get, but these are the questions I have so far...
1) Is there anything you have to do before surgery? Any prep?
2) Will you be totally unconscious for the surgery? Or will you be awake with the area being numb?
3) Do you have an injection in your tummy to numb the area? (Makes me uneasy just thinking about that.)
4) Do they make just a small incision below the belly button?
5) How long does the surgery take?
6) If they do find endo in there, will they take it out there and then? Or will I need a second surgery?
7) What does it feel like when you come round after surgery?
8) How long do you have to stay in hospital for? Do they keep you in overnight after the surgery?
9) How long does the incision area hurt for?
10) How long do you keep the stitches in before they take them out?
11) Do you have to take any tablets after the surgery to fight infection? And how long for?
I think that's all my questions for now.
Thanks
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Jess96
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Hi Jess, when I had my diagnostic lap in July I wasn't allowed to eat or drink anything before hand. You will be put to sleep with anaesthetic, so you won't know anything at all. I had three small incisions one actually in my belly button and one each side a little further down. The length of surgery will depend on what they do. Before you have your lap they will tell you what they will do, whether it's just to diagnose or to excise as well. When I came round I couldn't stop shaking they thought is was cold but it was just the shock. They put a heated blanket on me which was lovely. I was then taken back to the ward where I was give a cup of tea and some toast. I did feel a bit nauseous but not too much . The only problem I had was that my bladder went to sleep ( this always happens to me after anaesthetic) , so I was sent home with a catheter in over night and had to go back the following day to have it removed. Mine was day surgery but this all depends on the individual. I did have pain from the op but was manageable with paracetamol ab ibrofen. I found moving around helped a lot is I sat still for too long it was quite painful to get up. It gradually improved . I was back to normal in about 2 weeks but everyone heals at a different pace. My stitches were removed after five days. I didn't have any tablets afterwards, but I think they give you a shot of antibiotics during the op. I hope this helps Jess. If you want to know anything else just let me know.
Thank you for your reply. It makes me feel more at ease when I have an idea of what will happen. I hope I don't have to stay over night because I hated it when I had to stay for a night a few weeks ago. Being in there made me feel more ill than I actually was. I'd much rather go home and relax.
I've never had an operation before, so I'm quite nervous about it, but I know it will do me good in the bigger scale of things.
Did they tell you the result of the lap straight away?
I've just thought of another question, do they always use stitches that have to be taken out, or could they use ones that dissolve? I've been told that the dissolving stitches are only used for the inside. But then I've also read of people having them for the outside incision too.
Hi Jess, all I was told afterwards was that I had severe endo and that everything was so badly stuck together that he couldn't see the full extent, but that he knew that there was a lot more there that he couldn't see . He did also say that he suspected adenomyosis and we briefly talked about hysterectomy. Found out more in my follow up app. I then had a internal ultrasound in November with a specialist which showed full extent. Some people do have dissolvable stitches on the outside, I think it depends on surgeon.
Yeah he is a specialist endo surgeon. I still get pain from the cyst but I'm on Zoladex which has helped with the endo pains. Have only had the one lap so far but need more surgery. The next one for me will be a hysterectomy, ovary removal, excision and possible bowel resection, so will be open surgery.
Ah ok, the closest specialist centre to me is an hour away, but I think I'm pretty set on going there as I want the best chance of it being done thoroughly.
This might sound like a stupid question, but once your doctor refers you to the specialist, are they who you go to for a normal appointment, like where I would go and just talk to the gynaecologist? Because it's worth travelling for the surgery, but seems quite far to travel just to talk to them. Though I guess it would be worth it if they were giving me the best advice.
Yeah you would need to go to them but I would be worth it. Where in England are you? I've been really luck that I have a specialist endo centre about 10 minutes away.
Yeah I guess. The gynaecologists I've seen so far haven't been very helpful. They all tell me different things and the last one told me not to have a lap because it could grow back by the time I want children anyway. So she's just kept me on the pill, but I'm still getting pains almost every day.
I'm in North Wales at the moment. The closest centre to me is in Chester, over an hour away. Our house is up for sale, and there is a centre about 40 mins away from the area we hope to move to, but we don't know how long it will take for the house to sell, so I don't really want to wait till we move, as it might be another year. I want to get my problem sorted as soon as I can.
I'm actually coming to north wales on Friday for a holiday. I don't blame you for not wanting to wait , so if you can get to the Chester one go for it. I really do wish you all the best Hun. I just don't want anyone else to suffer for as long as i have with no answers.
Aw cool. Well on Monday, I'm going to the doctors. Then later on the Monday, I'll be travelling North to England to see my boyfriend. Then I come back home to Wales on the Friday morning. Have a nice holiday
And I'm sorry to hear you've had to suffer, but thank you.
Have a look at the BSGE list and see if you have a specialist centre near you, my go didn't know there was a endo specialist centre, so be prepared before you go to the gp, a lap is nessecery for diagnosing, and my surgeon excised whilst in there, which makes more sense other wise you will need a second one if they find any thing, this might depend on where the endo is and how straight forward it is,
Thank you. Yes, I am all prepared to speak to my doctor. I've printed things off so I don't forget what to say. The nearest centre to me is over an hour away, but I think it'd be worth going to make sure a good job is done of it.
So did you have to ask them to use dissolvable? I'd prefer dissolvable ones. Was there a reason they used them for you?
No they just used them, I have my first appointment with a BSGE centre on the 18th, I was seeing a general gyne before, I've had excision and a hysterectomy for Adenomyosis and still in pain, I wish I had seen a specialist first, but it is what it is, the centre I'm going to is about 1 hour away, on a really busy route and my appointment is ar 9 am, so I'm going to have to leave ar 6 or be in traffic for hours, but I'm hoping it will be worth it,
I took my iPad with me and showed him what I had found, still can't believe he didn't know any of it, xx
Hi Jess, I had my lap in October. I went with a general gyne as I just wanted a diagnosis as no one believed I was in as much pain as I told them. I got the diagnosis of endo but the surgeon wasn't skilled enough to remove it from my bladder so I'm still in the same amount of pain (possibly more as when I do too much my incision sites hurt and make me feel nauseous) i would only go to a specialist centre now I'm hoping to be referred next month. I wasn't allowed to eat after 7.30am and drink after 11.30 my surgery was at 3 and I was under for around an hour. They put a cannula in your hand or arm and that's how you'll be put to sleep, I'm a wimp with needles and told them beforehand so I had the numbing cream and spray and it worked for me.
I woke up in recovery and was a little out of it but honestly I had worried myself for nothing, I had no pain as they had given me painkillers during the surgery.
Only pain I felt after an hour was the gas they put inside. I read online elevating your legs would relieve it and I found it worked I only had the pain for half a day or so.
Incisions I had: they went in thru my tummy button (this has been glued back together, looks really neat and people wouldn't notice id had surgery) and then to laser the endo in my uterus they went in just above my bikini line there's an inch long scar now, they used dissolvable stitches, they came out on there own after a bath on day 15 but they can stay for ages.
I was discharged at 10pm and home by 11pm, I just wanted my own bed. The hospital wanted me to have a wee before I left (i literally did a tiny drop my bladder didn't work properly for at least a week so I went every 1-2 hours just incase) I went back to work after 3 weeks, the first few days back were hard as I could feel my incisions knitting back together. They should remove the endo whilst your in surgery thats the point of a lap but it depends how severe it is but if u see a specialist they are more skilled at removing it.
I didn't take any tablets for infections beforehand. And was sent home with ibuprofen and paracetamol (I take tramadol for my pain and found i hardly had to take anything after the surgery, I took paracetamol x2 every 4 hours just to stay on top of the pain but after 48 hours I stopped and just rested)
Don't be nervous i felt the same as you as I had never had surgery before but it was nothing and even though I still have the pain I've got some benefits from the surgery and certain pains haven't returned. Good luck xxx
I'm the same with needles. I'm not too bad when it doesn't take too long, but when I went to the hospital and had my blood tested, it took ages because my blood runs slowly, so he was there putting my hand at different angles to help the blood out and I felt so sick. I also didn't know I was having a cannula in my hand, so it made me feel uneasy that it was still in there. I went dizzy so I had to lie down with my legs up... I might ask for the numbing cream too haha.
What's the gas for? I've heard people saying how painful it was.
So did you have anything to aid your bladder? Or were the doctors satisfied with the small wee that you managed to have?
A lot of people say they still have the pain, but I guess endometriosis never goes away fully (that's what I've been told) but at least it will be better inside. I'm wanting surgery because I want the best chance of being able to have children in the future, so I'd be happy if my insides were good, even if I still get the odd pain.
Is there anything you can do about the pain? Will more surgery make it go away, or do you just need to control it with pain killers now?
Definitely ask for the numbing cream and the anaesthetist will probably put the cannula in, they are probably the best person and will do it first time she did mine in less than a minute (I'm a nurse so know how long it can take junior doctors) the gas is put into your tummy, it expands your stomach (you might be bloated after the surgery so you'll need loose clothing, I had a nightie and leggings) you'll have shoulder pain after the surgery but take your pain killers.
They were happy of how much wee I had done but I rang 48 hours later to the ward and said my bladder wasn't working properly and the nurse said it wasn't anything they had done in surgery and to see my gp. (It went away after a while)
At the moment I'm waiting for my post op appointment my consultant wants to try zoladex injections to put me through a temporary menopause but I'm not keen and currently trying to conceive.
I'm still in a lot of pain daily, pre surgery I was having labour like pains every 2 weeks in my uterus this has resolved since the surgery, I have twinges in my abdomen and a bad back pretty much daily but it's liveable when I take strong painkillers like naproxen, tramadol. I had pain during sex (sorry if tmi) I now don't have that pain.
After the surgery you'll feel emotional if they find endo but I found it easier in a way knowing what was happening in my body and now I can make decisions about the future.
One thing I didn't do but wish I had..... Buy something to soften your stools... I didn't and it was traumatic the first time I opened my bowels. If you need anymore advice I'm here if you ever want to pm. Xxx
Yeah, I hate not knowing what's going on, so I think I'll be the same once I know if it is endo. I'll be able to make plans instead of guessing what will happen.
Thank you for all of your advice, I really appreciate it. I don't think I have any more questions at the moment, but I'll let you know if I think of any
This all depends on whether or not you want a definitive diagnosis of endo as this is the only way to do so
Wondered why your gaeni wasn't keen to do this ?or were they wanting to try hormone treatment first .
As for your questions a lot of them are down to the individual but you will have a general anasthetic to put you to sleep .depending on what they do either just diagnose or do some treatment surgery will depend on the day .
I know you are nervous at the thought of it but If Was you I would take it but by bit you need to get the gaini to do a lap first !!
Yeah, I definitely want to find out if it is endo, I don't like not knowing.
Well at first I was on the combined pill, then she changed me to a new pill. But if having a lap is the only way to actually diagnose it, then I think she should have offered me the surgery, or at least talked me through it, but instead she just ruled it out. I was relieved at first when she said not to have surgery, but now I understand it's the wisest thing to do, as I need to get it diagnosed, at least.
I'm going to my gp tomorrow, so I will see what he says.
Hi, you understandably have a lot of questions honey. I had my first lap recently and they found endo, a cyst etc so it was worth having done so they could fix my problems- I wouldn't have had any chance of conceiving without the lap. I'm not going to lie to you but I don't want to scare you either. It's not pleasant and you will take time to heal but if you want to find out if you have endo it's the only way. My lap was under general anaesthetic so yes you're asleep, my lap took about an hour but I found it really hard to come round afterwards. You will be sore and will prob have pain in your shoulders but this goes after a couple of days. I took about two weeks to get better and my scars are healing well now- I have 4. It takes a lot out of you physically and emotionally but I felt pleased I had some answers and they could fix some of my problems. Any more questions please ask xx
Thank you. I'm going to the doctors tomorrow to talk about it, but I'm worrying myself now. Did you go with a specialist? And did they remove all of the endo? Have you had pains since?
I've just read that before the lap, they will be able to feel the endo nodules by sticking a finger up your anus and vagina. I think this might just be for Rectovaginal Endo. But someone on this site suggested that that's what I have... Will I have to have a finger up my anus?!?! Having an operation sounds bad enough. I don't want a finger up my anus.
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