To cut a long story short,I had a lap 5 years ago which confirmed I had extensive endo on my right side. Had problems on and off since but from Nov last year I've been in constant agony with it. Had second lap yesterday and surgeon said nothing was found and its vanished and I should count myself lucky,I would if I wasn't in agony!!
Been looking a lot on net and realised this is not uncommon for it to be missed,I was made to feel like I'd wasted their time and I'm pretty upset by my treatment.
Just wondered if anyone here has had similar problems.
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Jane36
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Yep, had a lap in 2009 was told I had endo, was fine for about 6 months then it gradually got worse again had another lap in 2011 where they told me I didn't have endo just a bit of scarring and that it was probably IBS! There is no way I'd get another referal to gynea as they now think it's all in my head....helpful NOT! It is very common for endo to be missed by surgeons as a lot don't seem to know what they're looking for!!! Sorry this has happened to you too xxx
Hi mine is not quite the same but I've had endo for about 10 years now and was basically told this is what you have get on with it, but I get pain every day and a month ago I had my second lap as the pain was getting worse they found no active endo and so it was not treated and I was left as I was before the op, it was made out that my pain was not from endo but I still get all the problems and symptoms but from what I have read on the internet some endo can be under the surface and if the surgeon isn't an endo expert it probably gets missed and that inactive endo does cause pain and symptoms, it seems we need endo experts to treat us x
Thank you both so much for your replies. Was virtually inconsolable last night and today as been made to feel like I've just made it all up. This disease is bad enough having to live with on a day to day basis without doctors making us feel worse! I think an endo specialist is definitely needed,I've checked today and my surgeon isn't. I have been on a website today which lists all endo specialists in the country,think it was called Dr fosters health care if that could be of any help to either of you.
I'm sorry you are both having the same sort of problems I am,it is nice to know I'm not going mad though!
Jane, from my experience - I was told by a gynea after an investigatory lap that I was a total mess (without any further explanation of what that actually meant) and was told my best hope was a hysterectomy, oophrectomy and HRT.
I won't go into detail of it all but to cut it short, I could not see the rationale for this and researched and found there was an alternative option (excision surgery) but my consultant had not even mentioned this to me. When I questioned them, turns out they themself 'did not do much excision surgery' was how they put it! I got myself referred to an endo specialist surgeon who was experienced in excision surgery - thus I had my endo removed and nothing else and, thankfully, have had no more problems to-date and that was 2 years 4 months ago.
I think what I am saying here is that the level of endo expertise even amongst those who say they treat endo, varies wildly - particularly with gynaes. You tend to get offered treatment that is commensurate with their understanding of endo/ expertise and gynaes tend to specialise in fertility, hormonal drugs and hysterectomies with endo as a string to the bow. I am sure there are some who do err on the side of being endo experts but i personally would recommend you see an endo specialist who has made that their main area of specialism. You are right that endo can be unseen below the surface, which is why my surgeon developed total radical excision rather than just removing seen patches.
When all is said and done, even if they believe there is no endo, then surely they should be investigating further or referring you onwards rather than leaving you in limbo. Seems to me they don't know what to do next!
I really do wish you all the best in getting the help that you need to resolve your pain x
Thank you for your reply,it seems so many of us are not receiving the treatment we need. Before I went in my consultant explained he would laser off any patches he found and I was told my hospital didn't perform excision so I would have to go elsewhere! He also said that afterwards he would put me on zoladex, he was looking at my pictures from 5 years ago and said that if my ovary needed to come out they would have to do that at a later date,I was expecting to lose it as you can't see it for endo.
As I left I was told they would refer me back to my GP with no follow up with the hospital as my pelvic pain obviously had another cause! I called the hospital yesterday and through complaining have an appointment with the surgeon next week.
Whatever the outcome of this I will be pushing for a specialist.
I'm glad that you are pain free and that you didn't listen to your original surgeon,it's hard to take on a hospital but for your own well being I think it has to be done.
For sure . . to be honest I would get a referral as, if you surgeon was only offering you laser treatment and menopausal drugs, which incidentally are only supposed to be used short term and then the endo can regenerate once stopped as it was only supressed not eradicated, so back to asking so what is next . . .
Laser only burns the endo off from the surface but it is a bit like gardening and just cutting a root down from ground level with the roots remaining below the surface if the endo was deeper. This is why it can come back fairly quickly with laser treatment if it was deeper. It cant come back up where the scar tissue is formed by the laser but it can come up as a different patch. I have even read of a surgeon say to a lady who thought her endo had come back after laser "oh it cant be the endo because I removed it" . . yes well . . . excision takes it away at the deeper level too, the root.
Another point to bear in mind is if you do end up having drugs to shrink endo and then have an investigatory lap too soon without allowing the passage of at least 6 months to a year, as the endo will have temporarily shrunk and not yet fully visible, the surgeon would only remove what he could see at that time and so the chances are it would continue to regenerate and you would be going back again for more. As most surgeons do 'patch' excision, I understand that it is best to get it operated on when the full extent is clear and it can all be seen and removed (unless undergoing total radical excision surgery where it is all removed regardless of whether visible).
I meant to reply to this earlier but finally think my lap caught up with me as been sleeping on and off all day.
Thanks for all the info you have given me,feel much more prepared to go in and argue my case now. Apparently my surgeon will be calling me early on in the week to discuss my situation but think my best bet is going to doctor and beg for referral !!
Thanks again for taking the time and giving me such a detailed reply.
I think endo can be missed a lot it depends who is doing your surgery.
I was seeing a gyno and they were convinced I had endo I have all the symptoms and in daily agony that I cannot cope anymore. I had my Diagnostic Lap 4 weeks ago to confirm endo, but I didn’t have the gyno in which I was originally been seeing I had just a Lap Surgeon, I was in for about an hour, 10 minutes after coming round she said I had no endo and it was probably just IBS and I need sex therapy, I couldn’t stop crying for days as I am now back to where I started once again and do not have any answers. I am going to go private now and see a endo specialist for a second opinion as I feel its not just IBS, even my GP now is making me feel like its all in my head, when I told her about going to an endo specialist for a second opinion she told me not to waste my money.
The GP has just put me on movicol and told me that should relieve all my symptoms, got to go back and see her tomorrow, it has not worked at all I feel worse if anything, the next step she has said is sex therapy which I feel I do not need at all.
I would say go to an endo specialist even if you have to pay to see one, don’t sit there and let these doctors fob you of, you know your own body and when there is something wrong, now days they always leave it until it is to late x
Reading your post it looks like we feel exactly the same,since my lap last Thursday I haven't had much time when I haven't been in tears as like you say,it's like being back at square one again.
I would say I can't believe you've been told its IBS and you need sex therapy but unfortunately I can as I've pretty much lost faith in the NHS.
I'm seeing my GP next week to be referred to an endo specialist,failing any joy there I'm going private.
As for feeling like its all in your head,I felt exactly the same when they told me nothing was found,despite my previous diagnosis and my previous lap pictures showing I have endo. You do question yourself and it makes you feel awful.
I really hope you get things sorted very soon as I can completely sympathise with your situation.
I Just feel like giving up, feel like I am getting no where now, even my GP is starting to think its all in my head I can tell by the way she talks to me, I am back there tonight to the doctors dreading it.
I cant cope anymore, my mood swings are terrible and most days I struggle to even get out of bed my symptoms drag me right down. I cant even be bothered to come to work anymore, I know it sounds stupid but I get so depressed about coming to work I cry all the way here as I am that stressed here. x
In no way is it stupid at all,I've been off work with depression for two months now after suffering day in and out with the pain and various other symptoms. Woke up one morning,broke down,rang my boss in floods of tears and said I just couldn't come in anymore. Luckily she has been so incredibly supportive and my job is being held open for me.
Could you get signed off from work while you're at the doctors tonight? Until this latest setback I was starting to feel more positive about everything and it really helps not having the added pressure of work.
Also do you have a relative or friend that could go with you to the doctors,just having that extra bit of support to back you up may help you. I understand about wanting to give up and when you feel so low it's hard not to and if you ever need someone to chat to I'm here,can't make it better but I do understand
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