I've been suffering with symptoms for 10 months, growing pain in my lower right side. It was effecting my uni, I've had to stop working, like you said, pain and bleeding during and after sex - everything seemed to be pointing towards endometriosis.
All my doctors thought so, the nurses were saying I was coming in for the lap, but also for treatment for ends, cysts removal and organs unsticking.
I had my laporoscopy today - and its come back where everything looks "completely perfect" apparently.
They've said from the gyno side everything is done, and I have to go back to my GP. Maybe look at my bowels, or other things, or get referred to a pelvic pain clinic??
I was 99% sure they were going to find something, and was prepared for it to be endometriosis. To leave with nothing been resolved was utterly crushing. I was actually counting on some of the pain been decreased after this op today, to be able to go back to work and try get caught back up with uni, and just not be in pain constantly all day - and now I'm still in the exact same place - I want to cry!!
My mum came for my op, and was sharing a bed with me, (I live in a shared house so there is no spare room for her) and last night she kept snoring so I ended up sleeping on the sofa last night. She'd said she'd sleep on the sofa tonight if she snored, and she did keep snoring but I didn't want to say anything as I felt mean, but then she started moving about in the bed making the mattress jump, and my stomach is excruciating at the minute as it is, and her every move actually felt like sharp stab wounds. I told her it was hurting me and she just stormed downstairs been really arsey. Her iPad pinged and I went to turn it on silent and saw she'd just messaged her partner - also saying to him that I'm in excruciating pain and her moving wasn't helping - but she is now on the sofa and that I am an utter nightmare. Seeing the message above that from when we were waiting in the hospital again this morning she has called me that again to him.
I want to tell her to just go back home now. I feel pretty crushed by that, and that I don't trust anything she has said to me about been up here with me now I know she is talking about me like that to other people. I've only just had the operation today and she's calling me a nightmare because I said I was in pain from her constant moving.
Am I been a nightmare? Or would it be justified for me to just ask her to go. Its really upset me reading that and I don't particularly want that now, and it doesn't even seem like she does.
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Pain and bleeding during sex as well as abdominal pain can point to other conditions, whilist endo does have a hormonal component such as clots and tissue passed during heavy periods. As well as pain getting worse during ovulation and period?
Did the pain start with your period or during ovulation? If it didn't then it could be very well another condition.
It could also be adenoymosis or fibroids, did an ultrasound show anything in your uterus? Do you have thick or thin lining?
Did you have another surgery before (like an apendectomy) the pain could be caused by adhesions from a previous surgery.
It's also possible you have a early stage of endo so it's harder to find.
Another condition that can cause pain is called intersestinal cystitis it's harder to find but I heard 1 symptom is that acidic foods make pain worse.
The pain during and after sex is what took me to the doctors originally, it was excruciating pain, to the point I thought I was going to be sick from it.
As the months have gone on, the pain in my lower right side has become more intense, more frequent, and daily. I've been on painkillers for months because of it. I've stopped been even able to carry slightly heavy things because of the strain it puts on it, I've not even been able to wear small heeled boots, as after wearing them the pain would have intensified.
I've have had so little energy, finding it hard to do much, but having that much to do that I still kept trying, and then only manage half of the things I'm supposed to do. I hardly ever sleep anymore, I don't eat much, and I've just become slightly isolated, whether that is from, like my family, me pushing them away, or not living near any of them and having been dealing with this totally by myself, I do not know.
And it just began affecting my day-to-day activities, whether hat was uni, volunteering or work. I'd find myself not able to do tasks expected of me, or feeling that ill or in pain having to call and cancel.
Its hard trying to pin-point them, I think its just the increased level of pain and consistency, its now that has become worse.
The first ultrasound showed a cyst, they could not be sure if it was a functional cyst or and endometriosis cyst, the second one showed the cyst had gone. But in the lead up to my op they were saying there is a possibility that I will have at least one cyst again, and that may organs may have stuck together, which they would have dealt with during the op today. (Or yesterday now even).
I am on the implant, and that was causing lots of irregular, constant bleeding, so they have also put me on the mini-pill which has stopped the bleeding now, so I don't really have periods now.
This was my first surgery, I haven't had anything prior to this, apart from the cervical cancer screening.
I did not get to see any ultrasound pictures after it, but I don't think they mentioned anything about if my lining was thick or thin :/
The last few months of my work and uni have suffered quite a bit from this, I've found every single day hard, and just keep counting on this operation, it finally getting near, thinking that SOMETHING would have been done. SOMETHING would have just made it a little better, and to leave with nothing done whatsoever, apart from now the pain of the laparoscopy itself, I'm feeling pretty devastated from it all to be honest. I am due back in uni in about 2 and a half weeks, and work not long after, but as nothing has changed, I feel it will just be the same as before.
I just feel totally lost of what to do or how to go forward from this, and maybe a bit let down by the whole thing really.
Weight loss and pain are definitely signs of something bad happening.
What's your white blood cell count?
When did you get screened lt for cervical cancer?
Since it was first pain during sex then pain everyday it doesn't seem like endo b/c it would have to start with periods or ovulation then the pain would slowly become chronic.
Adhesions don't normally happen without surgery did they say what could've caused it? Endo spider webs things together (if you saw the pictures).
They didn't really say much, non of the things that you've mentioned that I can think of. I don't know my white blood cell count either.
I got screened for cervical cancer about a year and a half ago.
And it was pain during sex, but not every time. Its just the last half a year or so that the pain has become daily.
They didn't say that either, they just said from their point of view everything was fine, that it may be to do with my bowels, or anything else, and that I have to go back to my GP. They showed me the photos briefly, but I didn't look at them properly, I was still in the recovery room when they showed me them, and I don't know what I would have been looking for either.
I would defiantly try to see the photos but get your white blood cells checked out too, ovarian cancer although it's very rare can cause endo like symptoms and could start at any day.
But your organs shouldn't have been stuck together either so there is something going on that they might be unaware of.
I agree with Starry if it was very small it could be missed.
Yeah, I will try and get them to look at that then.
So should I get the photos and take them to a BSGE? I don't think my organs were stuck together, they just said that could have been a possibility and a possible cause from endometriosis, but I will try get it looked into more when I can.
If you have a BSGE centre in your area (their only in UK), you can also check online for pictures of the regular female reproductive system to compare yours and check for differences.
Firstly huge hugs a laparoscopy even diagnostic is not a minor thing. Do contact the hospital if the pain relief isn't strong enough. Only you know your relationship with your mum best and what to do but it sounds very unsympathetic to me.
Secondly where was your lap, in a BSGE centre or by a general gynae? Some types of endo are easily missed apparently and it's a curious disease where only a small amount of endo can cause a great deal of pain.
Do get the post op report and make sure all of the prescribed places listed in the diagnostic lap guidelines (see file on fb site) were checked as sometimes only the obvious ones are. Was there a video of the lap you can get a second expert view on? Only once you've validated the thoroughness of the lap then it's time to explore other possibilities, which do exist of course.
My lap was in a general gynae I believe, it was just in hospital, i'm not sure what a BSGE centre is.
I'm unsure if there was a video, I'm going to wait to see my GP and they may have been sent the photos? I'm not sure :/
I could maybe speak to my GP about a second opinion, they just referred me to the local hospital so I went along with that. I didn't really think or know of other options. x
Im so sorry to hear this i can only imagine the disappoinment, anger, frustration you must be feeling to not have any answers. As Starry says, my first question is were you seen by a BSGE accredited surgeon? This is the only way you can trust your diagnosis or lack of. If you were seen by a general gynae, chances are you may well have endo given your symptoms but it could have been missed.you must ask for a referral from your GP to a BSGE centre. Look on their website and research your nearest centre.
Of course now you need time to rest and recover and then plan what you need to do next.
As for families i know all of us here have experienced less than sympathetic family and friends. What you can rely on is the support of the women here who know what it is like to be so unwell, try to hold down a job, meet your families needs and struggle to get diagnosed.
Keep talking on here, best wishes with your recovery x
Thank you for your reply My mum said she'd stay a week but it seems like she is going to leave today. I fully agree about this site, that's why I found myself coming back on it yesterday.
I am going to book a doctors appointment as soon as it reopens after the new year, and I will look into BSGE, I wouldn't have known to do that unless yourself and Starry mentioned it, so thanks
It was just a general gynae, so I will see what they can say. Its just starting the new year exactly as it ended, not fully what I'd envisioned!
I didnt know either until i found this site a year ago. I was passed the invaluable info regarding BSGE accredited surgeons/centres. I was diagnosed with stage 4 via lap at a centre in June. I am now at home recovering 5 weeks after excision surgery. To give you hope, the early signs are looking really good. Getting here has been a struggle (massive understatement 😉), but no doubt, it has been worth it.
When you have the energy and the fight back in you, get the treatment you absolutely deserve-trust your body. You know something is wrong dont let anyone fob you off x
Look up your nearest centre and research the surgeons. Unfortunately you will need to do the leg work, then tell your gp where and who you want to be referred to.
You can also take the NICE guidelines on treatment for suspected endo. Click on Lindle name, she has files on these documents.
my story started just the same as yours with my first lap clear despite stage 4 endo suspected as i had a large endometrioma. that was under general gynae. as my symptoms persisted and got worse i got referred back and eventually asked to see a bsge specialist. i had an mri and it confirmed the endometrioma was still there. in fact there was 3 if i remember rightly. along with adenomyosis and pelvic congestion syndrome. i had my second lap early last year to which they removed quite a lot of endo. they couldnt believe how it had been missed. it seems like the general gynae just peeped inside. a hard lesson learned trust your instincts as only u really know your own body. ask for a copy of the discharge notes and if possible get copies of any photos. look at the bsge list of centres and insist on a referral to there. if theyve not actually done/found anything then you still need further investigation. my heart really does go out to you. i too felt devastated when they said it was clear even though i perhaps should have felt relief. unfortunately my journey still continues but with the strength, support, and advice from family, friends and my endo family it gives me hope to keep fighting!! you are not on your own x take care and rest as much as you can x
Look for diagnostic laparoscopy in the files tab on endo register on Facebook for what should be done in diagnosis and some of the issues that are possible causes of misdiagnosis if it's done by a general gynae, who tend to focus in fertility though of course it depends on the individual and some are more knowledgeable than others.
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Very negative pre op assessment for diagnostic laparoscopy 
Feeling SO let down 
Gynaecology specialist
Is laparoscopy worth it if I'm not in severe pain? (Severe endo)
GP won't refer me because she doesn't want to look silly.
