Not endo anymore?

So so so fed up now!! So in September 2013 got told they found spots of endo then in December 2013 they lasered them away. Within that time to now I've have another lap and countless times in hospital. But now my gynae is saying it is not endo?

I am so confused! After everything I thought I knew what was wrong with me and now there saying it's not even endo causing my problems? :(

The pain and bleeding is horrendous just don't know what to do

19 Replies

  • Did they say what else they thought it could be?

    I have PCOS as well as endo and was diagnosed with pcos first because of the pain and bleeding :/

  • No they have absolutely no idea what it could be.

    So infuriating

  • Are they not going to do any more tests?

    I know how it feels though :/

  • I had all the tests they could possibly do apparently. Already been for a second opinion. They said maybe going to a London hospital would be for the best x

  • That's absolute rubbish Hun :(

    I hope you find an endo specialist, or at least some answers.

    Wish I could be of more help :/

    I've also read something a couple of days ago, just in case it is the endo and they've missed it which apparently can happen quite a bit -

  • Thank u so much it means a lot xx

  • Hi hun

    Have you been seeing a endo specialist or just a gynaecologist? I got told I had endo in may 2013 but only a 'bit' in my pouch of Douglas and no way is that causing me so much pain. Paid private to see a endo specialist and he did op a couple months ago and I'm covered in endo, everywhere apart from ovaries. My bowel, bladder, pelvic wall wall,everything and no way it had Grown so much in less than 2 years.

    If you are seeing a endo specialist who's got a good rep then I'm not sure what it could be hun. Have you had any scans like mri or ultrasound?


  • Just a gynae. That's what they said to me! They said I only had a little and that it wouldn't be causing me the pain/bleeding I'm having.

    Well that sounds like a good plan, if you don't mind me asking, where abouts do you live for the endo specialist you had x

  • I would 100% get a second opinion hun. The gynae I first saw was in blackpool and it said on the Internet he was a endo specialist but he's not when i looked into it more. My new consultant is in Stockport, takes a couple of hours driving to get there but he is definitely worth it. Where do you live?

    Horrible when you get told it's not causing you pain etc. I literally felt like I was going crazy and it was all in my head, well that's how my first gynae con made me feel but I knew something wasn't right xx


    Click on that link hun its a full list of accredited endo centres in uk. Your gp can refer you to whichever one is nearest to you, they usually have quite a long wait so get to gp soon so you can get on waiting list xx

  • I've already been for a second opinion and they didn't know. I live near London so I'm hoping the next step will be to go somewhere in London!

    It's so infruriating xx

  • Have a look at that link hun anyone on that list will be able to help. My specialist I'm seeing now said he saw a girl a few weeks before me and she'd had 5 laps and told she didn't have endo everytime. He operated and found it everywhere and she spent 5 hours in surgery x

  • Hi Emma,

    Saw your post, and it jumped out at me immediately. It's interesting that your first Gynae was in Blackpool, and that they were so poor at treating you. I have had exactly the same experience. My first Gynae was also in Blackpool, and he let me down REALLY badly - misdiagnosed me, and then failed to remove all my Endo, despite telling me to my face it was "all gone". I, too, now use a specialist in the Manchester area.

    I totally agree that it is awful when you get told things that aren't true - like your Endo is gone when it isn't, or that it's not causing your pain, or that you only have a bit of Endo when you really have lots... Being lied to is an added insult on top of all the other suffering that we put up with when we have Endo.

    My advice (tongue in cheek, sort of) would be that if you have Endo, NEVER get it in Blackpool!

  • Hi hun

    I've heard a few stories similar about blackpool. They went as far to say I 100% didn't have endo on my bladder even though I had all the symptoms and when my new consultant operated he found endo on bladder and bowel. Crazy isn't it how they treat us, I really dont think they know anything about endo, so glad I've seen real specialist now.

    Do you live in blackpool? Private message me if you want hun xx

  • Hi - you will been seen by a general obsterician who has likely not ventured much further than your reproductive organs. Endo is often missed and is why so many end up further down the line with serious disease. If there is one good thing about your situation it is that you are at the start and can now control the way your treatment goes as provision is in place now for you to take charge.

    The first thing we need to know is what was found and done at both laps - can you obtain the operative reports sent to your GP. There will be just a small charge.

    Click on my username and read my first post on endo and its many symptoms to see what you identify with. Get back when you have the reports x

  • Hi,

    So sorry you are going through this, but please read Lindle's post and the previous posts of hers that she is pointing you to. She really knows what she is talking about, and - sadly - so many Drs and Gynaes do not.

    Endo can and does grow back very quickly. It can be in all sorts of places that they don't necessarily check. And the amount often has no bearing on the pain: that's more to do with where it is, and what damage it's doing: eg, causing different bits of the body organs/tissues to stick together.

    I had 2 laps and for the first they said I didn't have much endo, and they didn't understand why it was causing me so much pain. For the second (admittedly 10 years later) the gynae said I had loads ... and he didn't understand why I was not having far more pain. Both were bemused ...

    Please, read Lindle's stuff, get back to her, and do follow her advice.

    Take care,


  • Goodness, I feel so sorry for you! I can totally identify with your problems... the impression that I get is that many medics who come into contact with Endo sufferers:

    a) Haven't a clue how to deal with Endo

    b) Are totally out of their depth

    c) Lie, talk bull, and make things up as they go along

    I've been in a pretty similar situation to you. I had symptoms for YEARS (since @2002, when I started getting really obvious ones). However, my Endo was not correctly diagnosed until 2010. I had laser removal in early 2011 - totally without success, as the Hospital was incompetent (NEVER go to Blackpool!). I then ended up having THREE more surgeries, with 2 radical excisions.

    In ALL that time, I was NEVER properly told what stage my Endo was, or exactly where it had grown. I was told I had Deep Infiltrating Endo (the worst type where it grows INSIDE ligaments and tissues). I was told they had found some around my Pouch of Douglas, and in my Utero-Sacral ligaments. However, it seems it may also have been on/around my bowel, and on/around my kidneys and ureters or bladder as I had stents on the last 2 occasions of surgery.

    Following my first, and my most recent surgeries, I have been told "all my Endo is believed to be gone", only to have my symptoms recur VERY quickly. I still have painful, clotty periods; back pain; pelvic pain; upset stomach; fatigue... These are ALL symptoms that I got when I knew I had Endo. So, I am baffled as to why my doctors are saying they think my Endo is gone - BUT I still have ALL the symptoms.

    I'll tell you what I think happens with ladies like us... We go to see a Gynae Doctor. They are not sure what's causing our symptoms (and often think we are liars, or making a fuss about nothing). They misdiagnose us for years (saying our symptoms are Irritable Bowel, or Stress), or fail to diagnose us. Finally, they hit on Endometriosis, and do surgery to try to remove it. They fail to remove all of it successfully, but they lie to us and say "it's all gone". Later, when our symptoms come back, they do not want to believe us, because they are kidding themselves that all our Endo has gone. So, we are "back at square one"!

    Basically, I think that this happens because Doctors want to have a quick turnover of patients - they do not want cases of patients who are not successfully cured and thus hang around for years! However, Endo is NOT a simple disease.

    In my experience, this can happen whether you see a basic Gyne, OR an Endo specialist. I have seen BOTH, and they were NO different! My best advice to you is KEEP PESTERING THEM FOR ANSWERS AND EFFECTIVE TREATMENT. If you are not satisfied with your current Doctor, demand a second opinion. Also, demand to see ALL your medical notes and records. There should be an explanation in there of what they think you DO have, if it's not supposed to be Endo.

    Added to that, I would do your own research. Read up on Endo. Read up on your symptoms - then, if you think your Doctor is incorrect, you have valid reasons for pointing this out. Keep a diary of your symptoms - when and what they are, to help you spot patterns in them that may hint at a particular disease cycle. Research alternative therapies - maybe acupuncture or massage to ease pain. Ask your G.P. about second opinions; explain what is going on during an appointment and say that your symptoms are still a problem. Maybe your G.P. can refer you to a Pain Clinic or Physio to help manage the pain and other symptoms.

    You NEED to get to the bottom of this. Therefore, next appointment you have with your Gynae, take somebody along with you for support (and to back you up). Make a list of questions that you need to have answered, and refuse to be fobbed off. If you are still unhappy then, it's maybe time to look for a new, improved Doctor. Follow the advice of ladies on this Forum to find a specialist.

    DON'T give up - and DON'T ever believe you are at fault. Good luck, and I hope you can get something sorted out to your satisfaction.

    Best wishes, E. x

  • Has anyone after a hysterectomy had the Doctor damage a nerve in your pelvic? if so what treatment did u receive. I had injection in my core pelvic only to find out it helped 25% & can't use my bowls with out force!!!

  • Adhesions and scar tissue start binding up bowls & other organs the adhesions R like spider webs endo even if gone leaves lesions and can be thick like I had and Doc when taking out my ovaries removed all that. showed me pic's after surgary. It's been 1 yr now and I've been in pain grossly fatigue ets. I seeing a new female OBGYN/surgeon specialist next month, I really need test done again. Ultra sound, MRI

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