I just can't believe it saw images surgeon did not come round to see me afterwards pictures of ovaries blade and womb it was clear suggesting could be something else so now worried about have a follow up in 2 to 3 months just worried they did not look properly in a lot of pre op pain for nothing but how could there be nothing there when I have diagnosed endo😭😔🗽
Had lap yesterday no endo found so confused - Endometriosis UK
A laparoscopy is the only true way to diagnose endometriosis. How had they diagnosed you previously? Through symptoms? I guess there must be other conditions which could cause similar symptoms. You need to really push for more investigations as to what could be wrong if it's not endometriosis.
Before I had my laparoscopy, the consultant said he was 99% sure I probably had endometriosis after listening to my symptoms, but they can only really know once they actually get in there.
They didn't find mine until my second lap, the first time they didn't see it. Even then my surgeon didn't have very good notes on what was found I was never told where the endo was or how extensive 😞. Although my surgeon was a lovely person in hindsight I've learned he is not a specialist in endo, try looking up where your nearest specialists are (there are some nhs ones if you are uk) and get referred there
I had this happen. I was diagnosed in 2005 after having problems since 1998 and in 2011 I had a repeat lap which showed nothing but was still really suffering. Took advise to see a consultant at a bsge centre at the end of last year. Can't tell you how amazing they have all been x sent me for further tests and an MRI which has shown endometriosis, ovarian cysts, and endometrioma and sadly adeymiosis which I hadn't given much thought to that. Having a lap in 3 weeks and a colonoscopy in Feb. I can't believe the difference in understanding and care I have received from a specialist as opposed to a regular gynaecologist. I have been made to wonder if I am actually making it up sometimes as normal gynae and assured me endo pain on occurs in tummy not legs and back etc. One even told me it was not gynae related it was a back injury 😕😕
Anyway sorry for long post just hope you get it sorted x
hi christine. i can see on your previous posts that you have had a lap before which is how u have the endo diagnosis. just because they have said it was clear this time isnt necessarily the case if done by general gynae. i had a large endometrioma which was missed by general gynae along with severe stage 4 disease as i continued to have symptoms i had to push to get back in the system and to see a bsge specialist. they were shocked during my second lap as to how it could have been missed. general gynae did do a picture of part of my ovary which looked clear but didnt show all of it. hence as soon as bsge started to move things i was covered in it. it appears they just peeped inside and were not thorough at checking at all.
i would give yourself some time to recover from the surgery first just because nothing has been removed it doesnt mean recovery is easy. i was off for 5 1/2 weeks with my first lap. the bsge lap recovery was easier dispite doing loads of work. as nothing was removed your symptoms are likely to remain the same as before so when u are up to it you could go speak to your gp or even contact gynae to try get an appointment sooner.
be good to yourself and rest in the mean time x
Hi Christine the problem with general gynaecology is they tend to only look at womb ovaries tubes and usually this can happen in these cases I don't doubt that u don't have endometriosis as it also grow outside these organs which was the case with me I had aheadions on pouch of Douglas and endo found in my womb I think what u should do when u feel better is go and see your gp and ask for a referral to bsge as they tend to look at pouch of Douglas uteral sacral ligaments the bowel and bladder as endo can grow in these areas to I hope that ur on the mend soon and please get the referral to bsge centre it will be totally worth it in the end x
I was told by my gp that it's takes on average 3 laparoscopies to diagnose endo. Not great! I too had a laparoscopy that showed nothing. The gynaecologist did see that I had varicose veins in my pelvis apparently this is very common especially on women that have had children and I suspect as soon as she saw them whipped the camera out and tried to put all my pain on those. Load of rubbish. I had the mirena coil which did zero other than give me sweats, hair loss and terrible mood swings. I charted all my symptoms for 3 months, went back to the gp and she took one look and said it was all related to the rise and fall of eostrogen and was sure it's endometriosis. Keeping trying and hopefully you will find a consultant who is willing to have a more thorough investigation.
I asked how long it took was told 40 mind I only have 2 wounds one left and belly button but I have been suffering right side pain I had 3 wounds last time still left side but the other one was very low down in pelvic region just feel like I am in all this pain for nothing and will probably be sacked because it turns out I am a lyier
I hope you feel better soon. It is sad that women still seem to have to be very strategic to recieve proper care for endometriosis. I hope you can aceess some pain management support for your physical troubles in the meantime.
I agree with the post that has mentioned you were formerly diagnosed through a lap. In my mind once a woman has recieved that diagnosis for endometriosis she should be properly treated for the symptoms of this disease that can be life altering, especially where chronic pain is left untreated. All the best for your recovery from the lap.
Was it a BSGE Clinic (= Specialist NHS Endo clinic?)? and not just an 'Endo Clinic' in a Hospital (which my local hospital has) - it has to be a BSGE Centre ... though they are sometimes in hospitals.
Go to the 'Endo UK' site - they host this site on 'Health Unlocked' and there is a link to their site at the top of the page. Look up BSGE Centres on the site and se which is the nearest to you, but do also talk to the Endo Uk advisors, and also make sure you have, or obtain all copies of your 2 op reports and details of all pains, treatment and referrals, etc.. GPs have a protocol they are supposed to follow about referring certain cases of endo to BSGE Clinics.
As someone has already said, if it was just general gynaes, then they often do not have the extensive and detailed skills and experience to search all the hiding places in the entire pelvic cavity - which is what needs searching, not just a look at the ovaries, uterus and tubes - some of these places eg Pouch of Douglas are very hard to access and properly check. Further, they may not have the skill to recognise Endo tissue in all its forms - there are at least 4 different types, I think. Finally, if they find it they are not as skilled at removing it - which in your case may be something to be grateful for, as partial or bad removal can make things worse.
Talk to 'Endo UK' and also take a look at Lindle's posts on here, and at her Facebook page on 'Endo'. I think you need to go back to your GP and ask for a referral to a BSGE Clinic, but do your research first.
So sorry this has happened to you and I do hope you get some successful relief from your pain, soon.
Hi did you go to a specialist centre? I had a laparoscopy back in November and I went to a specialist centre following advice on this forum and nothing was found I am still in pain but I had complete faith that everything had been looked at properly and I will be referred to a pain clinic whenever the nhs get around to it.Have a look for lindles post she is so helpful and it really helped me (I was originally seen by a general gyni and told to have a hysterectomy )all the best treez