Does it ever get any better?!

[Faye_Craig1]

Hey I am 3 and a half weeks post laparoscopy op and although I feel I have got over my surgery it seems like none of my original symptoms or problems have gone. Saw my gynae last week for a follow up and he said my pelvic area and everything was clear at the end of the op and it seemed like he was surprised and sorry I hadn't had any real relief yet. I have half started the endo diet and am planning on starting it properly next week. I am also continuing with biofeedback treatment with my pelvic floor dysfunction, which seems like a side effect of the endo and maybe that will still take a long time to sort out. The first week post op I was obviously getting over that. The second week I was starting to feel a bit better, but was also relaxed and at home with my family. Then I went to a wedding as I felt well ish enough and everything played up the worse it had done in that whole week and then ever since, I am now also back at work, everything has gone back to square one again and it is like nothing has changed. Will things ever get better or improve at all? How long was everybody else's recovery times? Has anything helped you? Trying not to be down about it all but it is constantly draining as we all know and whatever I seem to do never seems to help xx

[Lvb85]

Hey! I have not had a lap yet so am further behind you. However, I think unfortunately symptoms don't go-it is just finding a way of managing it. I had a formal dinner last night and feel really ill now-I think for us controlling our diet is key and you cannot do something like this at a wedding/formal occasion. I also find late nights don't help. I guess when your body is under so much stress anyway, this puts it under yet more. I think it is about finding ways of managing. For example, if you have an occasion like this, mentally prepare yourself that the next day will be hard-can you schedule in a 'film day' or something-even invite people over so you don't feel like moping but you are actually with people in a situation that is restful for you. Sorry to not have all the answers or to have specifically answered your question. Hope things get better for you. Give it time-the body needs a long time to heal.

[Faye_Craig1 in reply to Lvb85]

Thanks so much it is probably a time thing, either with your body healing or just getting into a good routine to manage it. A film night is a good idea, I actually don't mind that sort of socialising because it is restful and I can happily not drink but when you get 'friends' jibing at you for being a party pooper it is obviously difficult. I've got some good and bad ones though so I shall just stick with the good supportive ones from now on :)! Thanks x

[emily_83rob]

Hi. I went to see my consultant last week ahead of having a laparoscopy to cut out endo and he said that although I should recover from the surgery within about two weeks, it can take around three months for the other symptoms to settle and to actually feel relief from the pain. It's disappointing that whoever you are seeing obviously doesn't know this. I was also told to expect the first period after to be painful. Sorry if this all sounds negative. But the way I'm looking at it is that after three months hopefully I'll be pain free and can move on with my life. For many women, it never comes back. And those who do see it return, it might be years before they have to go back. I had to fight to see a specialist in endo who thankfully knows what he's talking about. But he was telling me that so many women are being wrongly advised or not given the best treatment because their hospital doesn't have specialists. I hope this helps and I hope you get some relief from your symptoms soon.

[Faye_Craig1 in reply to emily_83rob]

Thanks this is really helpful. Someone suggested that the reason it can take months is because obviously it relates to your monthly cycles so I'm seeing that at good thing to aim for. I'm seeing my consultant in a 3 months time for another follow up and in the mean time I'm keeping a pain diary and trying the diet so hopefully things will be better when I go back the next time xx

[Hidden]

I had surgery in February, I felt like I never really recovered from it and was still in a lot of pain, it turned out that I had had adhesions sorted in February and my bowel had attached to my ovary again nearly straight away.

In July I had surgery to remove the ovary and that seems to have done the trick with that particular pain so don't rule out adhesions x

[Faye_Craig1 in reply to Hidden]

Can adhesions be formed post surgery then even if you didn't have them originally? X

[LavendersBleu]

You're body is still healing internally. I'm 4 weeks post lap and had a massive set back this week which had me in bed with a hot water bottle and in massive pain for 2 days. Felt like I'd taken a massive step backwards! Anyway after a much needed telling off from my doctor and some good rest it's calmed down again. Internally it takes time to heal so when you start upping your activity levels sometimes your body just says no, it's not ready yet. I'm naturally an a active person so this recovery period is really frustrating as I just want to be back to normal, but the best thing you can do is listen to your body and be patient (easier said than done right!). All the best for your recovery x

[Faye_Craig1 in reply to LavendersBleu]

It is good to know someone else is in the same position as me. I definitely feel, as you put it, as soon as you up your activities because you feel a bit better your body just says no. It is very frustrating indeed. Thanks and all the best for your recovery too x

[didymus]

Speaking as a bit of a surgery veteran, the first thing I would say is that it quite possible that your body is still healing from the surgery. I'd give things a bit longer and be careful not to overdo it.

Unfortunately endo can and does persist in some people even after surgery -even if the consultant is excellent. I fit into that group. However, other people get permanent relief if the surgery has been done well. Others may get some level of relief or a period of symptom free time before things kick off again. It's all down to the individual case.

To answer your question about adhesions - yes, adhesions can form as a result of surgery. Again, some people are more prone to them than others. Surgical adhesions tend to start forming very soon after the op if they are going to. They can cause significant pain depending on the location.

[Faye_Craig1 in reply to didymus]

Thanks so much for the help, these are all things I haven't been told before x

[Flowerpot23]

Hey. Sounds like a mirror image of my last 8 weeks. Had my 2nd lap 8 weeks ago to remove endo - like you I thought id be feeling better within 3 or so weeks - wishful thinking! - at 4 weeks post op I was back at work (had quite a lot done in surgery but also had 2 weeks holiday on the end) and had felt no relief of my previous symptoms since my op. I found the thought of the endo diet too daunting to try and so I have decided to cut out wheat and red meat. I started this 3 weeks ago an am only just starting to notice a slight reduction in pain. It's also helped with constipation which I suffer badly with. I'm starting to make a list of foods I find irritate me and will cut those out too. (So far I have porridge and chocolate ) keep going ... I know the road seems long (never ending in fact) but I'm starting to feel a glimmer of hope. Xx

[Faye_Craig1 in reply to Flowerpot23]

I know what you mean by daunting, I have read as much as I can about various things that can help with symptom relief, particularly with nutrition but it is all so overwhelming it is very hard to know where to start. I am also going to give up wheat and see if that makes a difference. I have tried lacto free and gluten free before but it hasn't made a difference. Apparently not all gluten free products are wheat free too though, which I originally thought was the case so even just trying to find wheat free rather than gluten free stuff is hard. I suffer a lot with constipation and nausea and have started my own list too, if it can help with just those one or two of those things or even just my bloating i will be happy. Thanks x

[Blondedia]

Hi. I had my lap in February. I wasn't given a follow up appointment, I was told I didn't need one. I had quite extensive surgery as my bowel and stomach had stuck together so it was quote a sticky op. I felt ill for quite a while, but I felt guilty for not doing anything, so after a week and a half, I started ironing and other housework, then I started to feel really ill, so I went to the Dr and she told me not to do a thing. She read my hospital notes and told me that my surgery was quite extensive and extremely tricky and would have taken the surgeon quite a while to perform, so I should be at home resting. I didn't know any of this. When you leave hospital, they only tell you to take your meds, nobody tells you how long for or how you will feel after. It took me 3 months to actually start to feel better. Even now I still feel pain in my pelvis and left leg.

I also went out for the day and by the end of it I felt so rough, I actually ended up in bed for a week, feeling wrecked, in pain and bleeding.

When you read other peoples posts, they say how they were back at work and the gym within a few weeks, then you feel that you should be feeling the same as them, recovered and back to normal after a few weeks, but it doesn't work like that, we're all different, we all heal different, and we've all had different things done, so we shouldn't compare.

Hope you feel better soon.

Lisa xx

[Faye_Craig1 in reply to Blondedia]

Thanks so much for this advice it has really reassured me that these things take time and it isn't just me, it is just that everyone is different. I had a bad episode yesterday, felt better this morning and then got tired food shopping this afternoon. As soon as I am not sat down I am starting to feel better again. It is definitely a case of listening to your body. Thanks again for the support xx