Recovering from 1st Laparoscopy

[Caitlanfin]

Hi guys.

Had my first lap on Friday and they didn’t find anything 😞 I cried as soon as they told me. They said that it was all normal except my womb is bigger than it should be and it’s tilted. They said the next step for me is an MRI scan.

I’m just devastated. I should be happy it’s not endometriosis but I’d just accepted that that’s what I had. I just want a diagnosis. Now I’m back to square one.. people are already saying “well maybe you’re just one of the unlucky ones who has really painful periods” and it makes me want to scream 😞

For all those awaiting a laparoscopy the recovery is more annoying than anything else. I’m on day 2 and I’m just fed up of not being able to stand up straight or sleep on my side. I showered this evening but had to sit down. I can’t sit up properly without being super uncomfortable. But it’s not as bad as I thought it was going to be.

I know this post is a bit of a rant, I just feel besides myself and alone in my situation 😞 don’t even know what to do or where to go from here

[HettySpaghetti]

Hello, I have my first one next week and after years of being told to put up and shut up with IBS they’ve trying this. I feel the same as you. I hope they DO find something. Mainly because I have to responded to any diet or medication since I was 16. I’m 45. I’m sorry your uncomfortable it’s something I am dreading tbh. It just proves to the medical profession how bad things are on a daily basis if we are willing to do this. Let’s hope they follow you up with proper care. Xx

[Sylv_99]

Please don’t lose hope, I’ve been there and I can remember everyone saying how happy I should feel when I actually felt like it was the end of the world. I’ve had other laparoscopies where I did have endometriosis but one where they found nothing. I spoke to a consultant at an endometriosis meeting and she said that endometriosis is so difficult to diagnose and spot as it can appear so differently in different people and so if your consultant doesn’t have a wealth of experience, they can easily miss it. I researched consultants and got my gp to refer me to him and that’s when I started getting proper answers. xxx

[Hidden]

Keep going! I was in a similar position but told everything was fine and they wouldn't even offer me a scan or even a follow up appointment and that it was all in my head. Also just because they didn't find it doest mean it's not there, it can be missed so don't give up hope, see what the scan has to offer, hope you get your answers soon!

[Anchi629]

Hi there, I had my op on Thursday, and when I woke I was told the same thing, they didn't find a thing.... I cried at the hospital and on the way home feeling that they must have not seen it and now I'm also feeling back at square one, with also trying to recover from the surgery... it's been painful, can't sleep or sit up, or sleep. Feel for you, my surgeon said my bowel was a little bigger than Normal and that he has referred me to a gastroenterologist... my period pain is not bearable, at all, I can't live with it, and I thought this op would help... I know how you feel... :(. I think I might go to my 4 week appointment, and if I'm not happy I'm going to get a second opinion and maybe have to go private. Expensive but I can't live with the pain. I do wonder if the ladies above have a name of a gp that is good?

[princessk09 in reply to Anchi629]

Hey, sorry to just post but I went private and it’s honestly the best thing ever. I’m waiting for my lap but my new gynae works at spire and is an endo specialist. After being messed around on the nhs for a year and being told it’s not endo and the pains are normal. This guy knows what he’s talking about. Maybe look into a spire hospital near you and on the gynae page, it gives you info about each one. I live in Manchester.

[Anchi629 in reply to princessk09]

Thank you, I will look them up, I'm in south London.

[MaloushkaPat in reply to Anchi629]

Exactly in the same situation! Had a lap giving the all clear but my bowel was apparently dilated, they blame constipation but even when I am fine I am in pain and my period pain is unbearable! Xx

[Sylv_99]

My consultant is at the Royal Surrey hospital in Guildford and I can not recommend him enough. I’m not sure if you are allowed to name them on here but private message me if you want his name. His research is known worldwide. As for a gp, I am yet to find one that truly understands xxx

[Dee11]

Don’t lose hope! I had the same issue where although they found scar tissue and adhesions, they told me there was no Endo and I was left with no follow up or anything after it.

I also went private and it was the best choice I made - I was very lucky that I only need to pay for my consultation and I’m now being taken on by my new consultant as an nhs patient for another lap. Apparently Endo can be missed sometimes if it’s too deep or hidden away somewhere, so it may be they haven’t looked everywhere. That’s what they think has happened to me so I’ve now been told not to rule out x

[MaloushkaPat]

Did they mention adenomyosis? A large uterus is usually a sign of the condition and the symptoms are the same as endo, do a bit of research andI would ask the question at your follow up!

Otherwise I am in the same boat as you, I had my lap a bit more than 2 weeks ago and they didn't find anything, told me my pain came from constipation! That I barely get anymore as they treated it but I m still in pain.

As they told me to go to my GP if I was still in pain (which I am on a daily basis...) I booked an appointment with one and he was fantastic (it was a locum one). He has been the first medical professional to actually listen to me and told me I was not crazy in the last 18 months I have been fighting this battle. Apparently I have some problem with my appendix but also something gynea related given my symptoms he advised me to ask my consultant if they checked my appendix at all at my follow up.

Don't give up, ask for a second opinion but if I was you I would defo look into adenomyosis to at least give you a new route to explore.

Good luck xx

[Caitlanfin]

Thank you so much everyone, makes me feel so much better knowing I’m not alone xx

[123happym]

Hi I am glad someone mentioned adenomyosis, I have this and endo. They have said going to MRI which is used to pick up issues that a lap would not. MRI used to help identify possible adenomyosis. at my last lap pre MRI they said uterus bulky and have known retroverted since 1st lap c.15 years ago. I have a son and am now 46 and having hysterectomy.

[poppy75 in reply to 123happym]

I was also going to ask have they said it's adenomyosis? That would explain the large uterus plus it can cause contraction pain and a lot of the same pain and symptoms as endo. I have both (joy!). Do ask about adenomyosis xx

[Caitlanfin]

Hi guys, so I just received my letter and it says that my uterus is adenomyotic. They didn’t mention anything on the day which is weird. I’m still going to go through with my MRI, I’m hoping and praying it shows endo somewhere. I can’t explain it but it’s like I KNOW I have it, I just feel it in my bones. I’ve heard a lot of people who’ve had multiple laparoscopies before a surgeon has actually found anything, so after that i will go private I think. As much as I appreciate the NHS, I just need this sorted. I’m already having to wait another 6 weeks for an MRI and I just don’t have that kind of time! I want to move on with my life (not that you can move on from endo but once I have the diagnosis I can start to work towards coping with it better)

Thank you for your replies ladies. I’ve been really really ill (I’m going to write another post about it just to warn people) so I haven’t been on social media long enough to respond. But I’m sending everyone my love xx

[Anchi629 in reply to Caitlanfin]

Hi Caitlyn, lucky you got a letter! I haven't even heard anything about a future appointment, they pretty much threw me out the door after my op, without much info and I've had complications getting better with no help from the few wrong numbers they gave me to call. Anyhow- I did wonder myself that I might have an MRI done in the Czech Republic or somewhere cheaper, where you can have a complete check MRI body scan done for really cheap, at an English expat hospital. Just thought I might suggest that if money is an issue as I've been thinking it.