This is my first post on here and I just wanted to reach out because I am feeling quite lost and hopeless.
Long story but i have been having constant issues with my health for about the last 3 year's now. It started when I was 19 after being on the mini pill for a year. I began having quite bad issues with my bowels and chronic pelvic pain and was diagnosed with IBS. A short while later my periods began getting really irregular and more frequent and painful than they were for the first year on the pill. It got to the point that I was having periods that would last for up to 2 weeks and only have about a 1-2 week gap between them. I was getting spotting between my periods and also bleeding after sex. Not to mention I was also experiencing a lot of pain during sex.
Throughout all this I also had issues with acid reflux, something I've never had before. I have extreme fatigue to the point where I can sleep for 10 hours on the weekend and still need a nap by mid day. I also find myself falling asleep in meetings and training at work. I have issues with pain in both my hips and back which the doctors have put down to having tight muscles.
After numerous doctors appointments, being taken off the pill, blood tests, ultrasounds and internal exams which all found nothing, I finally had a laproscopy on the 19th of November this year. This was with a general gynea at my local hospital. When i woke up the recovery room the surgeon came in to say "good news you don't have endometriosis and you are being discharged back to your gp." Please understand, i do not want endo, but right now I just feel so disheartened and upset that i don't have an answer for what is wrong with me. This is having a huge impact on my life, as i am having to take time off work due to the pain and issues and also cancelling plans with friends and family.
I just want answers and don't really know where to go from here. I have an appointment booked with my gp for a coil check next Friday (mirena coil was fitted during surgery) so i am going to ask what to do next then, but from previous experience my doctors are quite happy to say I have ibs and need to learn to live with it.
I just want to know if anyone else has had this experience or has any advice for me.
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Mcguigly
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Hi, in waiting for my lap appointment and i'm really scared this is what is going to happen to me. However if this if the only way to diagnose you needed to have the lap to be sure.
The doctor I seen said if endo isn't found it means I have IBS the symptoms are really similar but this is not incurable. Follow a strict diet and within 6 weeks you can slowly try and add other food groups back into your system so I've researched.
Thank you for the reply and I hope that your lap goes okay.
I already follow a vegan diet as i was vegetarian when my bowel issues first arose and I found dairy made it worse. I kept a food diary for a while and just couldn't identify any thing in particular that would trigger my issues. I just find it odd that all my other symptoms are constant no matter what i eat and do appear to worsen around my period/when I am ovulating. Which makes me think its more than IBS. And it doesn't explain why my periods are so agonising.
I just find the whole situation so frustrating and it feels like a constant battle to get answers or help.
If you need to talk to anyone before after your lap let me know. It can be scary but try not too disheartened if they don't find anything. And if they do, then just push for treatment and to be referred to a specialist. Stay strong!
You could ask for a second opinion? I have read so many posts on here where some people have had numerous surgeries being told they didn't have it to then a specialist finding it later, this really worries me i think we know our own bodies and know it is something more. X
I think that is what I am going to do. The surgeon I saw wasn't a specialist and I am not sure which areas he checked for endo. When i see my doctor next week I think I will ask if she can find out where he checked and if he took pictures.
Hey, you ideally need to be seen by an endo specialist to formally diagnose endo as they'll know what to look for in a lap and where to look. General gynae may quite often miss things as they'll look in the common places - around the uterus, tubes and ovaries, endo specialists will look all round the bladder, uterus, bowel and all the other cavities / spaces in the abdomen.
You can either say you'd like a second opinion by an endo specialist through your GP or gynae consultant. Check out the BSGE website for a list of endo centers, they're still NHS so can help if you're symptoms are severe. It's worth searching on there for a center near you and calling them to see what they say.
For a diagnosis and treatment pathway check out the NICE Endometriosis website, google it! It lists the flow chart / path that specialist endo consultants should follow.
Unfortunately general gynae do not have much knowledge of endo and therefore can often prescribe hormones without looking in detail to find the root cause of your symptoms.
Hormones may help some women, but for others (myself included) the side effects weren't nice.
It's worth checking out the Endometriosis UK website, there's lots of info on there to help you carry out more reasearch. Its one of those things that we need to self identify and then push the treatment we want which ideally is a diagnostic lap with an endo specialists and if possible at the same time excision of endo and biopsies of anything else they find; that then starts you on the path to "normal"
Rememeber it's your body, you know somethings not right so it needs sorting - rather than just saying "live with it" - we shouldn't have to live like this, we need more doctors to listen to us and take us seriously.
Thank you so much for the reply. I am going to request for a copy of my lap report and see where has been checked and push for more tests and things from there.
Before my lap I had been told I most likely had endo. But when they found nothing I felt like i just had to give up and felt like it was all in my head or that what i am experiencing is just normal. So thank you for taking the time to reply, it is making me feel much more confident about pushing for answers hearing from people who have been through or are going through similar things.
Unfortunately you can't request a referral to a BSGE centre because of severe symptoms, only if there is evidence of severe disease. At the moment you don't have this evidence - this would have to be found at your lap, from a scan or from deep endo being felt when examined internally. At the moment these have all come back negative
You do have some symptoms of deep endo - bowel issues that are not just at period time, pain with sex and back/hip pain. This is often referred down the legs, usually the left. Fatigue is also a well recognised symptom of endo (or should be) and is a type of fatigue that can be utterly total. I was completely debilitated by it.
What I suggest you do now is to obtain copies of your lap report and that will often show how thoroughly (or not) your pelvis was searched. Reports often only mention the reproductive organs when the most common locations for endo, and the place where deep disease most commonly develops, is deep behind the uterus on the uterosacral ligaments and the pouch of Douglas. If these are not mentioned that will be a good indicator that it wasn't a thorough lap. You can download guidance here on how to get your records.
Thank you so much for the reply, that is really helpful.
Although nothing has even shown up on my scans, i am concerned that i have not been sent for all the scans I maybe should be sent for. I haven't had an internal ultrasound, or a MRI as i have read that some people are sent for.
I have just read your post regarding symptoms of endometriosis, in paticual bowel endo, and there are other symptoms on there that i also have that i didn't realise were symptoms of endometriosis. So thank you for that.
I will request my lap report as you suggest and take things from there.
Thank you for the help and suggestions, it's nice to speak to people who have experienced a similar situation. After my laproscopy I felt so silly and like i should just drop my search for answers and live with my issues. But i just can't keep living like this.
This happened to me about a week and a half ago, to say I found it devistating was an understatement. I cried for like four days, it literally felt like the end of the world. I'm 30 now, started having issues at 14, so to wait that long for a diagnostic lap and to have it negative has been...massively difficult.
I don't know what to say to you, because I haven't worked out what to do next either...but you're not alone. It does happen, its awful and I am so very sorry you experienced it too.
I have found it difficult having no answers/diagnosis after 3 years of issues, so i can't imagine how hard it must have been for you. From reading other posts on this forum it looks like many people have had negative laproscopy from non specialist gynaes, and then have gone on to a specialist and been given a diagnosis with a second laproscopy.
If you haven't already I'd have a read of the other replies to my post as they have been extremely helpful for me.
I am going to ask for a copy of my laproscopy report at my doctors appointment next week, so that i can see exactly where the surgeon looked, and then take things from there. Maybe see if you can do the same if you haven't already?
I have really struggled with not having a diagnosis, especially because i was hoping to wake up from my surgery with answers and a plan to relieve my pain and symptoms. But instead I feel like I woke up back at square one, no closer to knowing what is wrong with me than I was three years ago. But we both have to stay strong and keep fighting for answers. As many others have said, we know our bodies best and we know that something isn't right.
I've already made a request to the hospital for everything they have on me, MRI, ultrasound, charts etc. If you are wanting detailed notes about your surgery I would also requet your hospital files.
I have an apointment with a private gyne down in Glasgow (I live in the NE of Scotland) in January after the Christmas break.
To leave that OR with no answer, nothing, even if it wasn't endo, just nothing is unacceptable. I'm also quite angry with the fact I got put on the GnRH agonists for almost a year before my lap, when I then later found out these drugs arn't meant to be used before surgery as they can make finding superficial endo more difficult.
It's the nothing is upsetting. Theres something wrong with me, why cant they find it?
You know your body best, definitely try get your gp to refer you for a second opinion.
I was in a similar situation to you, where I had a laparoscopy and the general gynae was so passive that prior to my results she claimed we wouldn’t find anything. I had the lap, they said I was all clear and it’s definitely not gynea related - they instantly said go back to gastro!
However, I was left without many answers like you, a lot of pain physically and mentally.
So when I met my GP, I insisted that I wanted a second opinion - which he thankfully quite easily agreed (if you read up on second opinions, you have a right to one btw). Let me note though, I paid my first appointment and then I asked my specialist if I could get a referral- he was as kind to agree as my symptoms were screaming somethings not right down there.
Long story short, about three weeks ago my specialist doctor has diagnosed me with adenomyosis and endometriosis!! He personally diagnosed my adenomyosis as I’d not had a MRI scan on the nhs, however what I found most shocking was that after he’d reviewed the photographs of my previous laparoscopy he said it was evident that endometriosis were present - furthermore the surgeons at the time had written this in the notes and claimed that they had treated it. All behind my back. Without telling me and letting me feel like I was a complete nut job. Now, I’d like to hope and wish this is a rarity and that it doesn’t occur often as I now, personally, really struggle to trust the NHS.
Point aside, you know your body - if something’s not right please look into the BSGE centre, find a specialist you like and is somewhat close, get a second opinion for your own wellbeing - it really helped me. Even if he’d have ruled it all out.
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Really suffering and just don't know what to do 😟
laproscopy found nothing after MRI showed endo 
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