No endometriosis found following laparoscopy ADVICE?!

Hi all,

I am 22 and went to the GP in January with pain during and after intercourse (deep and to the left), nerve pain in my left leg, irregular and painful periods. After all STI checks were done and came back negative she suggested endometriosis and referred me for ultrasound. Ultrasound found nothing and so referred me to gynaecology.

At my gynaecology appointment I gave her the same history but she ignored my leg pain and left it off the letter. However quoted "mild tenderness in left iliac fossa" and "left adnexal tenderness". She offered me a diagnostic laparoscopy which I had last week (August).

The laparoscopy came back clear and there was no evidence of endometriosis, I couldn't really put together what the surgeon was saying as she went through my pictures as I was still a bit out of it from the general anaesthetic. The surgeon was very unhelpful when I asked what it could be instead and walked off before I could ask any more questions. Would she have definitely checked the pouch of douglas as I have read that is associated with pain during intercourse? Also I haven't mentioned that during my periods I have really loose stools about three times a day is this relevant as well?

I am at a loss as to what to do because I feel there is definitely something wrong with me and all my symptoms seem to be consistent with endometriosis. I wonder if the fact I was started on cerazette around 8 months ago could have resulted in it being missed laparoscopically?

HELP

20 Replies

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  • Bless your heart! How frustrating for you. I'm 22 as well and had real struggle making progress after my first lap. When you go to your follow up be persistent and ask for the next stages of treatment and some clear options to get a diagnosis. Don't let them send you back to your gp and discharge you. In the meantime you could ask your doctor to refer you to a pain clinic or women's health physio, and try and ask for something stronger to get your pain under control. We shouldn't have to deal with our medical problems like a military operation but it's the only way to be heard sometimes :/ for now just look after yourself and time some time out to recover. I hope you get the answers you need, take care xxx

  • Thank you, it is the waiting in between everything as well that so soul destroying. After my op I wasn't even told what the next step was so I rang and booked an appointment with my GP (she is really understanding) to see where we go from here and actually talk through my options and results. Thanks so much for your suggestion I will mention it at my next appointment. xxx

  • God it's awful isn't it :( you are doing everything you can right now. I hope you have a speedy recovery xxx

  • Was your lap done in the BSGE centre? These are specialists in endo.

    My first lap was done by the general gynae:e was able to perform only half on the lap (literally!) and without even looking at the other ovary and Fallopian tube send me back home to get pregnant with words 'pregnancy will cure you of endo'.

    Only later I have found out about BSGE - search this website for more info.

  • No it was done by a general Gynae at southmead hosp in Bristol which is where I am located. I have recently come across BSGE during some googling after my recent frustrations. The gynae after my operation said (with a smile on her face) I have a small uterus which may move and bang around during intercourse and cause some pain which just seems ridiculous as during my ultrasound there was no mention of "Tiny uterus".

  • My story sounds similar to yours, I had a laparoscopy in April and was told no endometriosis was found and discharged without him saying any more. But the pain I am in is not normal and since have had my bowel and bladder checked which is all normal. I paid private to see my local endometriosis specialist and he seems to think the laparoscopy I had was not done right and awaiting another laparoscopy to be done. So push for another opinion! I know how disheartening it is but seeing the endometriosis specialist he was lovely, listened to me and completely understood the pain I am in.

    Take care and I hope you get some answers x

  • Hi, thank you so much for replying! I have been thinking of paying to see a private endometriosis specialist consultant but as a student starting my masters this month money is so so tight so I don't think I will get there. I definitely want a second opinion I was just not happy with the gynaecologist who performed my laparoscopy and how uninterested she was in answering my questions. I think I am going to try and get ahold of my laparo report and images so I can take them to a specialist if I get there in the end. When I woke up and was told it was all clear I just felt crushed and that I must be going crazy did you have your bowel and bladder checked after the first laparoscopy? x

  • I don't know where abouts you live but my local endometriosis specialist also works for the NHS. So that maybe an option for you to ask your gp to refer you to see them. The pictures from my laparoscopy there was only 4 photos and one of them was unclear as I have blood in my abdominal cavity. The surgeon never told me this at the time and never removed it, so the specialist is concerned that this could be adding to my problems.

    When I woke up from my laparoscopy and they said they found nothing I wanted to cry! I felt like I had lost the only hope to prove that something was not right. So I totally understand how you feel but keep pushing for answers as pain isn't normal!

    I have had a flexiscope done around a month ago to look at my bowel and check I haven't got colitis and the results were all clear. Then Tuesday this week I had a cystoscope to check my bladder. Yet again all clear. But my pain was so bad that day even before the op I was on oxygen to stabilise my breathing and morphine. The op on my bladder hasn't given me anymore problems then usual but it's ruled it out x

  • I am located in Bristol, I think at my GP's appointment on the 28th of this month I might ask for a referral to a specialist and see what she says. I can barely remember the pictures from mine or what she said as she came and spoke to me 5 minutes after I had been put back in bed after fainting in the hospital corridor ( my BP was something like 60/40). I feel exactly the same, I actually cried myself to sleep that night because I just feel so miserable which seems so wrong when it should be good news that there was no evidence of endometriosis... but I know there is something wrong.

    I am so sorry you have had to go through all this, I have my fingers crossed for you. I think I will probably go through the same circus as you getting bladder and bowel checked to rule it out. I hope you are helped soon and your pain is managed.

    How old are you as I have read online it is often harder to find in younger females? x

  • Hi, you said your gp is really understanding, before paying private ask her to do the referral for you x

  • Hey , yes I think I will I guess the worst she can do is say no and I guess then I would have to think about paying privately. Problem is this is my last appointment with her as I have moved out of catchment and have to register with a new GP's. So fingers crossed she will listen and do the referral for me x

  • Try to keep a diary of pain and symptoms between now and then to take with you so you can get the most out of the appointment seen as it will be the last with her, and explain that normal gyn can miss the condition if they don't look properly or know what it looks like, even tell her about this group and the large amount of ladies have have gone through the same problem and had to be referred on because of it, good luck x

  • Ah, I don't know who's the local specialist for you. I found a link on one of the support groups a few months back to find my local specialist, so maybe try google. That way you know the best doctor in your area.

    It seems like many people have to suffer and go through it all :( thank you and I hope you get your answers sooner rather than later!

    I have just turned 19 but been suffering with the pain for 5 years but this time it has been bad and not easing. So fingers crossed you get somewhere. I should get a phone call from my specialist Monday to try and get my laparoscopy pushed forward x

  • i've had a look and found two local specialists which I may bring up to my GP. If you don't mind me asking why did the specialist you saw think the lap was done wrong? Did they not check everywhere? Good luck with your phone call x

  • That's good news then and push with your gp for them to refer you. Tell them how much the pain is affecting you and see if your gp might even ring the specialists to discuss your case. Firstly because there was blood that shouldn't be there and they left it. As well as not doing a thorough look, the pictures and the notes seemed to show they hadn't looked everywhere. The gynaecologist who did it though was not an endometriosis specialist and the other ops he had done that day were hysterectomies on older women xx

  • Oh right ok, that is what I am worried about - they haven't looked everywhere. I am going to ring the practice the week before my appointment to make sure the doctor will have access to all the pictures and written report so my GP might be able to tell me whether they looked everywhere. I know the gynae who did my laparoscopy was just a general gynae and not a specialist.

    Thanks so much for you help, let me know how the phone call goes? xx

  • Endometriosis made the headlines last week again: theguardian.com/society/201...

    Your GP will have to refer you to BSGE centre

  • I don't think they have to it says only if confirmed disease "Women should be referred to a specialist endometriosis centre if they have confirmed, deep-seated disease." ?

  • If you let yourself be told hat they don't have to, your endo will never get a proper treatment.

    You must see specialist at the BSGE centre

  • I have exactly the same symptoms as you. My first lap they found mild endo on pouch of douglas which was ablated. Second lap no endo, my fallopian tubes were blocked/in spasm after being stuck in menopause after zoladex, they were unblocked with dye. I cried for weeks and felt insane. I was refered to gastro had many tests and was found to have nodules on my illeal ceacal valve which were normal. I eventually was treated for neuropathic pain with amitrytiline which helped so much. I recently came off all meds to get pregnant, unfortunately after a miscarriage all the pain is back in force. My gynae says its not possible but another gynae has felt my left ligament is thickened. Im seeking a second opinion but on waiting list for third lapx

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