This is a bit of a long post as im at my wits end with whatever is wrong with me.
I do have endometriosis and last October had a lap, tomorrow im due to have some endometriosis lasered away.
Although I have always suffered with bad endometriosis and pain etc something else has been going on with my body and im 99% sure this is a separate issue.
On 1st august last year I Started to compain of stomach pains, so bad that even lying down wouldn't alleviate the pain.
I then started to have severe diarrhoea, fever, headaches, blood in my poop, ached all over but the stomach pain itself was the worse thing.
I spent 8 weeks off work in total, twoing and froing from the doctors and a&e.
The doctors kept telling me I had gasto entiritis, I was there every day in absolute agony and trying not to go to hospital as I didn't know what was truly wrong or how serious it was.
In the end I got so fed up of being given tramadol and told to be on my way I took myself up to a&e. The triage nurse said straight away something wasnt right and I would probably be given stronger medication and have some tests done.
I had to give a urine sample first which ended up showing I had a UTI.
The Dr who saw me was adamant this was the cause of all my pain and gave me some antibiotics and sent me home.
So I took the antibiotics, nothing changed.
By this point I had lost almost 1.5 stone in weight from not being able to eat.
I went back to my Drs, who after I said I had gone to a&e then decided to do more tests.
I had another urine test which still showed a UTI and was given more antibiotics.
Then had blood tests, which showed inflammatory markers being over the normal threshold, but I was told it wouldn't be enough to worry about.
Still in pain and now on oramorph. I went back and fourth from the drs.
Until I couldn't take anymore and broke down on the phone to one of the drs.
My mum took me in and we discussed going down the route of seeing a gastroenterologist in a private hospital.
I had just had an exploratory lap in october and was told I needed some endo removed but it hadnt spread.
But this pain wasnt going anywhere and I needed answers.
So fastforward to now, I've had an endoscopy, colonoscopy (which my prep wasnt good enough for anyway) so came back as 'normal' although I can't see how that can be justified.
Just has a CT scan and my pancreas is inflamed but everything else is 'normal'
The consultant I have been seeing basically said ' I can diagnose you with IBS but you dont have any gasto problems so it seems prettt pointless'
Then tried to prescribe me medication for IBS!
Im so angry at how long this has been going on for and how im being passed from pillar to post.
Hes saying its gynae related and my gynae consultant think is gasto related.
What the hell am I meant to do now!?
Written by
MelissaMoore
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My advise would be get your GP to refer you to a BSGE centre, if you are under a genral gyne, they often miss endo, your pain could be related to endo on your bowel, and it may have been missed, have you had a MRI scan?
Where was you endo found,
The goals standard of treatment for endo is full excision by a specialist endo surgeon, these doc have undergone extensive training in endo and laporscopy. Laser treatment is not good enough for certain endo, and it should only be excised, and certain endo us only to be dealt with in a BSGE centre, there is a nhs contract in place stating just that, but unfortunately lots of gyne surgeons don't know, or don't comply with the rule.
If you are under a BSGE centre then that's great and hopefully your pain will be sorted out
Hi I agree with Tboag. It sounds to me like you have endo on or near your bowel. This can cause the symptoms you describe. Uti 's are very common with endo.. pain doesn't correspond with how much endo you have. You can have severe pain with minimal endo or no pain with severe endo. Don't give up. Please push for a referral to a specialist endo centre.
I was in exactly the same position as you this time last year. I was also in agony every day and taking oramorph in between hospital stays. Please persist with what your gut instinct tells you is wrong. I was sure I had endo and they wouldn't believe me, and said it was gastro. And then of course gastro said it was gynae. I am so sorry this is happening to you too because it is awful!!
However now I have been diagnosed with endo and given prostap injections which have saved me. I am now off oramorph and do not bleed!
So please please please just keep pushing to be treated correctly and push for what you feel is wrong. It will get better!
Also your symptoms may well be endo on the bowel, I had all the same issues and no gastro problems which have all been helped by putting me into menopause.
I am seeing a specialist under BSGE who did a lap and said it hasn't spread to my bowel.
I was meant to have exision yesterday but the op got cancelled as someone before me was having complications.
Before I went in I was told I would be having ovarian suspension which I have read is only for severe endometriosis, which I haven't ever really been told to what extent mine is.
So really I need to be asking some tips on what I should be asking and be prepared to know what is happening before I go down for the op!
I've been diagnosed with endo for many years but the first lap I had didnt even have a follow up to have any removed!
It wasnt until I joined this site that I found out about the BSGE list etc.
I've finished seeing a gastroenterologist and when I saw my consultant he said it hasn't spread to my bowel, but je has also reffered me to see another specialist, so maybe ill be better getting a second opinion.
Im sorry you've had to go through the same, its horrible and I have no idea how I have managed to cope these last 6 months!
I read your post a few minutes ago, and felt very sad about your situation - I really can empathise. So sorry to hear all the trouble you have been going through.
Still, please do not panic, and do not give up. The replies that you have already had to your question include some very good, very useful advice, which I totally agree with. You are the person who knows your body best; you live with it every day! So, you will know how you feel when well, and when something feels wrong. Trust your instincts - things like pain, and other nasty symptoms, are there to let you know that all is not well with your body.
I agree that it may be a good idea to seek a second opinion, and to ask for referral to an accredited Endo specialist centre. You can look up a specialist in your area at:
bsge.org.uk/ec-BSGE-accredited-centres.php
It's always a good idea to be under a specialist, as regular Gynae doctors do not know much about Endometriosis, so often run out of ideas really quickly when faced with it. Sometimes, they don't even know what they are looking for, so they miss it; or they misdiagnose you, and don't know how to treat Endo (I was misdiagnosed myself - the Dr. said I had polycystic ovaries instead of Endo!).
It is also a VERY good idea to request an MRI scan if Endo is suspected. This is because Endo can show up on MRI scans - even Deep Infiltrating Endo (which is the sort I suffer from) - and MRI scans are a good, non-invasive way of confirming that you have Endo, and locating where it is. Then, it may be possible to accurately remove the Endo during lap surgery. Laser ablation is ok for superficial Endo; but for Deep Infiltrating Endo, radical excision is required. So, it's always a good idea to discuss any MRI scan findings, ask what sort of Endo you have, and tailor the surgery to meet your needs. A good Endo specialist should be competent enough to do this, and to take account of where your Endo is, and what is needed. Specialists often work alongside bowel and bladder surgeons - especially if Endo is on or near these organs - so if you feel that you may have Endo affecting these areas, it's always good to discuss ALL your options, including surgery - pros and cons.
Sadly, having Endo does NOT prevent us from getting other illnesses or injuries, too. I am highly aware of this, and my own story confirms the fact. I will give you a brief overview, as it may help you to understand why MRI scans are useful, and why you should always ask questions...
My Endo took over 9 years to diagnose (because of misdiagnosis by both my GP and Gynae). They jumped to conclusions before even doing many tests - they said I had "irritable bowel", "stress" and later "polycystic ovaries" (misdiagnosed from cysts seen on an ultrasound). Once Endo was diagnosed I had 4 lap surgeries in total, including radical excision of Deep Infiltrating Endo. My last surgery was late 2014. Since then, I had about 6 months of healing and minimal pain, but the pain kept increasing. On top of the pain (which steadily became agonizing) I got bladder and bowel symptoms (frequent urge to pee, as well as diarrhoea and cramping). I had bowel symptoms before surgery so it was a shock for them to come back. My pain was worst in the lower left part of my back, and sometimes so bad it stopped me doing things like housework, shopping or going for a walk.
I have pushed for an MRI scan, which I've never been offered before. I am under a specialist centre, who also have pain management services. On Tuesday (this week) I got the results of my scan. It showed my Endo is under control but I do have adhesions (which can cause pain and restrict mobility). I have been given the option of further surgery to trim these back if I want. However, the scan also showed I have damage to a joint at the base of my spine where my ligaments attach (my Endo surgery included cutting into these very same ligaments), and also nerve damage. This could have been something that existed long before my Endo, and my surgeries have made it kick off. This is felt to be causing a lot of my pain, as well as feelings of needing to pee. The inflamed nerves are the ones that signal a need to pee and poo, as well as relaying all sensations from my pelvis.
If I had not requested the scan, and further follow up, I would not have found out that I have this problem. As a result, I have been able to discuss appropriate treatment, and now feel comfortable that I can manage things. The damage to my spine and nerves will not go away, but I can do things to limit their impact.
I am telling you this for several reasons:
1. To show that you can have Endo, and other illness/injury too - so there is a possibility that you DID have a UTI or gastro infection that caused your symptoms - don't rule it out.
2. To highlight the fact that having an MRI scan is really useful because it shows up anything that is going on in your pelvis and abdomen, so you get answers as to what is causing your problems without even having an invasive lap.
3. To highlight the need to see an Endo specialist because GPs and basic Gynaes do not know enough about the disease, and don't offer the best treatment options.
4. To prove that we know our own bodies best, and should trust our instincts and push for answers and treatment.
Oh, by the way, it may help you to keep a symptom diary in which you record symptoms, when and where they occur, and how they make you feel. Take this to all appointments with you as it may make things clearer, or help you and your doctor to spot a pattern to your illness. Also, plan well in advance of all appointments - make a list of important questions you need answered, so you don't forget on the day. If possible, take somebody with you to appointments - both for moral support, and as somebody to listen in case you get nervous and forget what was discussed.
Sorry for the lengthy reply. I do hope there is some information here that helps. Wishing you all the best and I hope you get it all sorted out.
Im sorry to read what you have been going through too but its nice to hear some positivity in the end that can help you!
Its been extremely difficult as my own GP had been reluctant to do anything, even when I was there every day begging for help.
I have polycystic ovaries, as well as endometriosis.
I knew about the polycystic ovaries shortly beforr being diagnosed with endo as I was going through the many tests before getting a laparoscopy.
If it wasnt for this website I wouldnt have found out about asking for a referral to see a specialist and im truely greatful for that.
I mentioned in another reply that I think I need tips on what to ask my consultant, I was meant to have endo removed on friday but the op got cancelled due to another lady having complications.
When I saw my consultant he said he would be doing something called ovarian suspension which from what I have read is only for severe endometriosis?
So I need to ask him really how serious it is.
Im only 25 and remembering questions to ask is difficult and overwhelming as im always alone when I have these appointments.
I started a food diary recently because I thought I could be suffering woth crohns, but the gasto consultant I saw told me I don't (he was very negligent)
My actual gynae im under now has reffered me to see a different colonic specialist in a different hospital, so I will go through everything with him and possibly bring up the possibility of an mri in the hope that will give some more answers!
Im not someone who likes to waste hospital time and money.
I know something is wrong and I wouldn't travel all over wasting holidays and petrol if it wasnt necessary.
Some consultants just dont understand, the gasto consultant I was seeing tried to palm me off with ibs and prescribe me amitriptyline just to get me off his list! I wasn't showing symptoms of IBS but he just wanted to say thats what it was!
Probably is endo related I went through exactly the same thing myself no one could put finger on exactly what's wrong, I went from 7 stone 6 to 4 stone 9 in 3 weeks. Go back to haematologist and insist it's his department. I underwent emergency operation to discover endo in stomach which was causing internal bleeding . If they had not of operated I would have died within next 12 hours. So do not take no for answer. I hope this helps you Babs.
Sorry to hear how badly you had it and I hope you are better now?
I have been diagnosed with polycystic ovaries and endometriosis for many years now. But it started to get worse again and once I joined this site I got all the info I needed and took it to my gp for a refferal.
I have had an endoscopy through a gastroenterologist who said nothing was wrong in my stomach.
I went from 10.3 to 9.4 and I'd already lost a load of weight so it really wasnt good for me!
I couldn't eat and was in constant agony, the only reason why im back to normal (ish) now is because im using strong pain releif constantly.
My gynae says its not spread to my bowel and doesnt think its endo related, so he reffered me to see a different colonic surgeon. So I think itll be worth getting a second opinion and probably asking for an mri like suggested from scooteeder!
Hello, so sad reading your story and frustrating. I am in similar situation but as yet no been diagnosed with endo. But I have had bowel issues and bladder issues also all passing me round to each other cause they don't have a clue what to do. I'm on hormone treatment at moment, they have given me injections to shut my ovaries down to see if it is a gyn problem which I believe 100% it is as I have little pain anymore after 3 months on them I feel it's helping but unsure what next step it going to be. I have lost all trust in doctors but hoping to go back to my gyn and be refered to a specialist. Hear anytime to chat
I know exactly what you mean though, I am sick of people passing me around and not taking responsibility for anything!
At first I was ignored by my GP for 6 weeks! Which is a long time when I was there every single day!
I've taken many different forms of contraceptive, the best for me was depo injection but I couldn't have it for long as my mum and immediate family have a thinning bone thing and the injection can make it worse or something!
Im now just taking a pill which does what it needs but it doesnt mask any pain.
Im due to have endo excised sometime soon (was meant to be friday but got cancelled!)
Hope you get on ok and likewise if you need someone to talk to im here xx
Makes a difference communicating with other people suffering the same as urself.
It's the most horrible condition every comment and post I read is so upsetting.
I'm due end of Feb to see my gyn again and will be explaining that the injections have taken pain away as I was suffering every day a month with maybe 2/3 days pain free. But I'm still getting te odd day of pain on these injection but it's so much better. The side effects r not good tho. He explained if it takes pain away then it's gyn but I'm also seeing my gastro too I really want to be sent to someone who knows what they r doing it's been years and losing my job and everything it's awful situation. And the scary thing even with a diagnosis which I'm desperate for hearing stories I know that my battle isn't over cause of all the treatment etc thank you for your comment and I'm hear also
I HAVE endo in stomach, in and around bowels and in bladder also in pelvic region in severe pain all time hysterectomy with bilateral oompherectomy I took Danazol 300mg per day for 14 years before operation. Better since but still have pain and tiredness.
Thank you everyone for your replies. Ill get back to you all very soon.
My endo removal operation was cancelled yesterday afternoon at 3pm after being there for 8 hours physicing myself up for it, it really got on top of me so I've been trying to get myself sorted first.
I live in Lincoln and travelled to wakefield at 5am to get there in time so it really took its toll on me with everything else that's been going on.
I've had higher inflammatory markers but apparently not enough to be worried about.
I had a colonoscopy but my prep was poor so the gastroenterologist couldn't actually see the walls of my bowel properly, but still claims that this test was normal!
He was an absolute arse!
But I have been referred to another colonic surgeon by my gynae in a diff hospital so hoping to get a second opinion and get some answers.
My last gastroenterologist consultant basically said 'i can diagnose you with IBS but we know that isnt the problem and I can prescribe you medication that might help with the pain but it wouldn't be definite.)
Then proceeded to try and give me a prescription for amitriptyline!
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