I have just finally been operated on after waiting on the urgent cancellation list. I was devastated when the surgeon came out and told me I did not have endo and that everything looks fine. I asked how that is possible and what I should do because the pain is so bad and I cannot even have intercourse.
She said it may be related to the bowels. I received a colonoscopy when I was 21 (I am 24 now), and they told me they couldn't find anything, and that 'maybe it is ibs'. Since then, I have cut out dairy and gluten and made severe lifestyle changes. Nothing has improved.
I feel like it is endometriosis. When my gyno first told me about it he said he was almost 100% sure that it was that and that I had literally every symptom of a severe case. I wanted so badly for something to show up so that I can stop feeling like I am crazy, and so I could finally have a reason for feeling so ill all of the time. I am not making the pain up and I know this... I have been struggling for so many years and have been in and out of the hospital for sharp pains in my abdomen and pelvis At one point they were going to remove my appendix because they thought it may be appendicitis, but it was not. I am in and out of the hospital so frequently with "phantom pains" in the area--- each time the doctors tell me they have found nothing, I leave with shame and confusion. The pain persists.
I know that this has happened to other women and I am wondering how you proceeded after being told that you did not have it. Is it possible I do and they have missed it? Am I just crazy? I understand that ibs causes similar symptoms but my periods have always been very heavy and long, with many clots, and painful for the entire cycle, up to a week after, and then the pains become worse one week before my period comes again.
Any assistance or stories from others are greatly appreciated. I feel so embarrassed, and lost and would like advice on how to proceed...
Thank you. X
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fieldsofsnow
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Hi you are not crazy. You know your body better than anyone else,so if you know something is wrong keep fighting till you get answers.
Was your lap done by a general gynaecologist? If so it is very likely they missed it as they don't always recognise all presentations of endo, plus general gynaecologists only tend to look at reproductive organs I'd. Ovaries, tubes and outside of uterus. If you are having pain with sex then it is possible you have rectovaginal endo. You need to see a specialist. Have a look on the BSGE website to find a specialist centre near you, then go back to GP and ask for a referral to them.
It maybe worth requesting the photos and op report from your lap. Then when you get to see a specialist they will be able to see for them selves what was looked at.
Also search on here for a lady called Lindle and look at her posts on treatment pathways,and how to get a referral to a centre. You can also message her for advise . She is and has been invaluable to a lot of us on here.
You're very welcome. I know how hard it is . I fought for nearly 30 years before I was diagnosed, as I knew from age 14-15 that something was wrong. Just wish I knew then what I know now.
Hate the thought of someone else suffering the way I did with no answers or an end in sight regarding pain. So if I can help in anyway just let me know.
hiya. i had my first lap under general gynae after suspected stage 4. said they couldnt see anything when went in. (took minimal photos which were blurred) . symptoms persisted along with new ones. i got myself referred to a bsge specialist and following my second lap ive now been officially diagnosed with severe stage 4. i asked how could it have been missed and they said it appears that general gynae just didnt look beyond what was staring them in the face. they couldnt believe it had been missed as its so extensive. it has been a really long hard road to get where i am now. if u still have problems u need to push for another referral. u know your own body. i really struggled when they said my first lap was clear. it was really confusing. good luck x
Get your GP to refer to so another gynaecologist but do your research in the hospital with in your area you have the right to choose where and who you see it's a fight but worth doing x
I have been diagnosed with endo and had excision surgery, but I'm still in pain so I'm now awaiting a laparoscopy with a bsge specialist, as I believe the gyne has missed something, xxx
Been there got the t-shirt! Had my first lap in 2011 same story nothing there. Increased pain over the years pushing for referrals as issues with bladder and bowels- told it was IBS, sensitive bladder "some women have pain and we don't know why" "you're young go and enjoy your life" it's anxiety and depression.
Had an MRI this year after going private and it showed something - referred on and last week I had my second lap with a consultant I trust, from the off he asked me directly what I had been going through. On the lap he said I was filled with blood and I've got endo pretty much visible everywhere. After speaking to him and then another consultant through my family links I've found out the unfortunately a laparoscopy is only good due to the person doing it!
Not sure what area you live in but research specialists in your area as referrals are open and you can be referred to anyone you want- if it's NHS it's a choose and book system and how it should work is you choose unfortunately lots of GP's don't give patients the option and this is incorrect.
Thank you to everyone who has responded to this post-- your insight and stories have really reassured me and have led me to ask my GP for an urgent referral to a BSGE specialist. I will be seeing them in August (so much for 'urgent')...
I am sorry to hear of everyone's pain and that they too went through a similar situation. I wish you all the best in fighting this disease...
Hello how are you now? IV just found this via doing a Google search and am so pleased to have found it as exactly the same thing has just happened to me yesterday (negative laparoscopy) what is a BSGE specialist where can I find info about this xxxxxx
Hi all. I've just stumbled across this post from 3 years ago. I'm in the exact same position as the OP. I had a negative Laparoscopy done in March this year by a general gynaecologist. I have had an appointment with another gynaecologist again this morning (non endo specialist). I asked to be referred to Expect Edinburgh as they deal with endometriosis as well as chronic pelvic pain. He said he's not referring me as I don't have endometriosis and my reproductive organs are normal so they wouldn't accept my referal. I'm on a different health board so the only way they'd accept a referral was through a consultant on my health board. He's agreed to do a pelvic MRI to look for deep infiltrating endometriosis but I don't really know where to go from here. I'm in Scotland and this is my third time seeing gynaecology.
Hello, I don't really have any advice for you, I just wanted to reply. I had a lap 2 weeks ago and was told my ovaries and uterus look normal. Before I went in the surgeon told me it was highly unlikely I had endometriosis as I had had children. So I think she had made her mind up before even looking. I have been discharged now, even though I still have been having symptoms for years and no answers! I am going to try and get referred to a bsge specialist this time. If that doesn't work I'm going to complain to PALS at the hospital I had the lap at. Try and keep your spirits up, and keep fighting for your referral. Take care xxx
I have been reading the posts here - it is comforting, but also sad to hear so many similar stories.
I am scheduled to receive my laproscopy soon. I'm very nervous, particularly because at this stage I am dreading a negative result more than anything. I'd been trying for years to find a GP who would take my pain seriously. I have always had painful periods, but in my mid-20s the pain became more frequent, and began lasting longer. Now I'm in some degree of pain (from just twinges to doubled-over) for 2/2.5 weeks each month. My current GP referred me to clinic to get a transvaginal ultrasound late last year. The medical staff there told me it was 'highly likely' that it was endometreosis due to the fact that my uterus and ovaries are 'fixed' and don't move around much in the abdominal cavity. I knew a temporary relief -- until I met with a gynacologist this month. There, I was examined with ultrasound. He basically told me that he doesn't think I have endo, and that I should have a baby to alleviate the pain. No questions about my situation, relationship status, or if I even want children. Just like it was a milestone I should hit, or a simple solution.
I must say I was pretty crushed. Now I am so worried the laproscopy will be negative, and I'm going to be told I've been imagining it all along -- I don't think I'll be able to bear that. Getting poked and prodded and operated on are not exactly my idea of a great way to spend my time.
Hello, I know this post is super old but I was wondering if you ever figured out what it was? I am in a very similar situation as you, I just had a laparoscopy with negative results today and I am afraid they are going to try and tell me it's all in my head for the 20th time. I am 29 years old and have been dealing with this for 5 years. Curious if your situation improved and if they found anything else wrong. Thank you!
I came out my surgery this week it came back negative, I'm so distraught and angry after years of being in so much pain and having bad IBS symptoms, blood in my stool, being in pain constantly and having the most unbearable periods.My surgery was just with a general gyne surgeon who specialised in laparoscopy and pelvic pain, I feel like should have researched more before going for it to ensure she specialises in endometriosis.
After my surgery and being told by nurses "the good news" of them finding nothing and me then bursting into tears then I had to wait around an extra 3 hours to hear how my operation went from my surgeon (I understand there are other patients) I was told my reproductive organs are as "healthy as can be" I wasn't shown images or told what else could be wrong and why I'm in so much pain always, there are just so many unanswered questions... But I was told "it's probably where youre young and developing" (I'm 18, I understand this is young but my symptoms are getting worse all the time and I'm being told "they will most likely improve over time"
I then asked about my lumps that I have in my lower stomach which cause me a lot of pain, she had also felt them at a previous appointment and she said "what lumps" and proceeded to go get the doctor who was with her during surgery and he said he tried feeling for them (when my stomach was full of air!) And felt nothing... (no duh, I was full of gas!) I feel like they didn't even look, I explained to him what they're like and how there are lots he said they could be lymph nodes (which previous doctors told me without feeling them) I explained how they are always up and painful and usually lymph nodes are neither I also mentioned how you can feel them move when you run your finger over them, he looked at me and said yeah maybe go back to your GP.
So after all this and having a terrible time after surgery... I'm no closer to any answers, I feel like I'm letting people down because there's "nothing" wrong with me according to the "professionals" I feel like I'm faking it like I'm a phony and I'm doubting myself about everything... It's so lonely and heart breaking because no one else seems to understand how much it hurts me waking up and not knowing if there is even anything wrong or if it's all in my head.
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