No endo after lap...?

[Tazzza]

Hi everyone

Well I had my lap done yesterday and as nervous as I was about it I was sort of looking forward to it - I suppose I was thinking once I'd had definite conformation of endo I would almost get a bit of closure, like I'm not mad/overly sensitive/have a low pain threshold but that I do have a legitimate reason for all the pain, tiredness etc.

When I had my first gynae appointment he said it sounds like I had endo for certain and that I most likely also had it on my bowel. He asked me lots of questions about my symptoms and said it sounded like bad case of endo that I was suffering with. The doctor who referred me said the same thing.

Anyway I had my lap yesterday, I saw the gynae first thing (he said he didn't remember seeing before which didn't fill me with confidence) and said that quite often you don't find anything from a lap.

After the lap the nurse said to me that they didn't find anything and that it was good news so I should be pleased. I'm sure she means well but it's left me feeling kind of flat - had a long and nerve racking day yesterday and in a lot of pain now and for nothing it seems!

I just wondered if anyone else has gone through something similar? Is it possible that he missed it, or is there nothing wrong with me, maybe I do just have a very low pain threshold? Every period I have I take prescription strength ibuprofen and cocodamol or codiene and most of the time this doesn't even make a dent in the pain, I have a couple of days when I'm just in sheer agony I can't even sleep.

I'm just feeling really fed up and sorry for myself! I have been told I need a follow up appointment with the gynae in 6 weeks, so maybe he will have some answers for me...

Sorry for the rant, just feeling a bit... 😫

[Tboag]

Hi, I know what you mean, you don't want endo, but you need to know what it is, I think we all feel like that before our 1st diagnostic lap,

Can I ask was you seen in general gyne or at a bsge centre, often gynes only look as far as the reproductive system and miss endo in other places like the pod,

When you see your consultant again check he looked everywhere possible,

[Tazzza in reply to Tboag]

Exactly - it can help to put a label to something. It was just general gynae, I'll ask him about it when I have my follow up appointment

[dawntildusk]

if u were seen by general gynae i would definately recommend a referral to a bsge specialist. i too had suspected stage 4 with a large endometrioma. first lap by general then came back clear. i was left feeling very confused. after a long battle i pushed for the referral and my second lap has now confirmed severe stage 4. if u dont feel right and continue to have symptoms u have to keep going back. good luck x

[Tazzza in reply to dawntildusk]

Thanks for the reply -it helps to know others have had similar experiences.

Do you get a referral from your gp?

I've checked and my nearest centre is in Aberdeen. I live on a Scottish island so it would mean getting flights, overnight accommodation etc - not too sure if my gp would be happy to refer me with all that!

[dawntildusk in reply to Tazzza]

i was actually referred by general gynae. after my first lap i didnt even get to speak to anyone about the results so i contacted the secretary myself and asked for an appointment. in the mean time i found this forum and learned about the bsge centres. so once they said they didnt find anything but my symptoms persisted along with new ones i insisted on them sending me to the bsge specialist (which actually turned out to be at the same hospital!!!). i also suffered a hospital infection after the first lap so my gp also sent me for a scan which showed the endometrioma was still there so this helped to reinforce the decision. a further mri also confirmed this with other issues too. not sure how it works in scotland though

[Tazzza in reply to dawntildusk]

Sounds like you had a dreadful time!

I'll see what the gynae says and if it's not much then I'll head back to the gp...

[dawntildusk in reply to Tazzza]

not been great tbh. was told im going to need a hyster. i think one of the worst things is being told one thing and then another. is hard to come to terms with properly. u know your own body!!!! keep pushing for the treatment u deserve x

[fieldsofsnow]

Hi dear,

I am sorry about the experience you had... I went through the exact same thing last week!

I would suggest having a look at the responses I received (link is below) as they have encourages me to make a new specialist appointment at a particular endometriosis centre in London for both a second opinion and hopefully a better course of action for the pain that has always been there. I am hoping that this clinic will be able to find something that the consultant who did my lap could not.

I have been feeling very down as well and have wondered if I am just sensitive and have chronic pain. Though that's a possibility for both of us I suppose, you know your body best, and if this has been an ongoing problem you should definitely proceed and exhaust all your resources until you find out exactly what it is.

It definitely does sound like you have it though, and maybe a specialist will be able to find something that your gyno could not.

Feel free to send me a message if you have any questions.

Don't give up.

[fieldsofsnow in reply to fieldsofsnow]

Sorry, here is the link to my post:

healthunlocked.com/endometr...

[Tazzza in reply to fieldsofsnow]

I've had a look a your post and I do feel as if I'm in a similar situation to you.

I'm trying not to get too fed up about it, but it's so frustrating when you just want some answers and help! Ive been told I'll have a follow up appointment with the gynae in 6weeks (I didn't think you got follow up appointments normally?) but I'm going to try and bring it forward as we are meant to be going away then. If I don't get much of a response from him I think I'll go back to gp and try and be firm that I do want to get to the bottom of this.

I hope your next appointment goes well - when do you have It?

[fieldsofsnow in reply to Tazzza]

I feel the exact same way, but perhaps it is some consolation to know that your pain is not in your head and that it is real, and that this experience is unfortunately a commonality in many women who are seeking a diagnosis. I was so surprised to find so many on this forum who have had similar experiences; most going in for repeat laparoscopies before getting the correct diagnosis.

It is good that you have a follow up appointment-- I was not offered one. Perhaps they will be able to offer an explanation or further help in attaining a second opinion.

I have also been booked in for an appointment at the clinic in around seven weeks but will also be away during this time... so I am trying to get in during July.

I hope you are feeling a bit better now after the procedure. try to rest up as much as possible, and I hope that you will be able to get in for your follow-up sooner.

Do keep me in the loop about how you are feeling and how your follow up goes.

[Tazzza]

Thank you for the reply. I've just started looking into diet stuff, I'm already a vegetarian so I think that key be a help as I've read a lot of about the connections between endo and red meat

[Tazzza]

Yes it does make you feel a bit better to know that others are in the same boat.

I've been a bit up and down after the lap but I'm heading the right way, back to work on Thursday so hopefully I'll be feeling nearly normal by then!

I hope your appointment goes well and you get some answers...

[EwanDan]

I have had the exact same thing. Have had painful periods all my life, along with bowel issues and have always been told its probably IBS. Had an implant in for the last 3 years and things started to get worse. When they took it out in February, the pain got worse and worse every month, until I eventually couldn't get up and go to work. This was the first time a doctor mentioned endometriosis. I looked up the symptoms and everything seemed to fall into place. Have just had a diagnostic laparoscopy and they found nothing and I've been sent home with no follow up appointment. Just don't know where to turn from here. My pain is not normal, I can't do normal things and I'm feeling so frustrated, as well as sore and tired, although to be honest, I don't fee any worse than before the op. Feel for you all. Should I keep pushing?so down about it all.