As I thought!

Went to see the Gastroenterologist today re bowel problems, nausea, abdo pains etc as dr requested.

I explained to Gastro dr that I have endo and think it may be that all flaring up. Bet you can all guess what he said next?!......It not endo as it doesn't affect the bowels, cause nausea! It is most likely to be IBS! I said to him, yes it does affect those areas to which he said again no. I wanted to burst into tears so just sat quiet and nodded obediently. Now gotta await appointment for an endoscopy, which he says wont show anything. Yet again someone who wont listen! I know he doesn't specialise in endo but to say point blank to me that I am wrong! grrrrrrr! Who knows my body best?!

He is going to write to my GP and say it IBS, can't be endo causing the bowel probs and nausea! So now I feel like I can't go to the gp and ask to be refered to a gyno as they will say well this dr doesn't think it is!

So frustrated and deflated! Sorry my rant is over! Thanks for listening xxx squidgy hugs to all xx

33 Replies

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  • oh yeh another thing the gastro bloke said was that the abdo pains and bowel probs can't be endo because it would only occur during your period not during the rest of the month as you are experiencing it! aaaaarrrrrrrrgggghhhhh!

  • That is absolute rubbish as many of us know because we live through it! Grr makes me so angry.

  • Thank you xxx yeh it does make you angry and upset too. Makes you question whether u do know your own body! But we do!

  • He is obviously clueless along with many other gastro, gynaes and GPs!!!

    This is what happened to me, last year when endo pain was constant, I was first in a gastro (keep in mind everything private too, with BUPA), And because pain was in my right pelvis where appendix is too, after endoscopy, colonoscopy, CT and ultrasound scans, nothing was found and he said of course the IBS word! They put me in that freaky IBS diet and with tablets to go all the time to the toilet, I ended up being 7 stone and still in pain!!

    He finally referred me to a gynae and when gynae said that only a lap will give answers, the gastro was even calling me days before the surgery, saying I shouldnt go through so many risks with anaesthisia and lap cause they wont find anything cause all I have is IBS....

    Needless to say, endo was found and the gastro even had the stupid guts to send me a letter (after he was informed about the endo from gynae) saying that he is glad that I got my answers...aaarggghhh (speechless)

    Are you under gynae too? Is a lap on the way for you? If not go straight back to GP and ask for a referral for a good endo gynae (do your own research in your area). x

  • Thank you for your kind words and advice.

    Yeh that is speechless the gastro writing at the end of it all as if he had been of help to get to that diagnosis! I am glad that you finally managed to get the lap done and get the answers. Bad of the gastro to be contacting u before the lap saying not to go through with it.

    I only went to a gyno once and that was a couple of years back. No Lap done as didn't want to aggrevate scar tissue. I will go back to GP and ask for referal. Just don't think they will until I have these other tests done by the gastro jerk as they haven't listened to me so far. I have looked at the list impatient mentioned of acredited gyno but none near me. There is one down in Poole where my sis lives tho.

    Thanks again x

  • I know exactly how you feel. Last year I had stomach and bowel problems. After lots of different tests the gastro doc told me " It is a bad case of your IBS, nothing to do with your endo." My gyno doc said it devo was my endo because she gave me the hormone injection for 3mths and she said that if my stomach and bowel problems get better then it proves that its your endo but if your symptoms dont improve then its devo stomach or bowel problem. I was even taking my IBS tablets for 3mths with no difference what so ever. Since the injection stopped I feel my problems are creeping back. I will be getting more injections in a few weeks so maybe it will calm my angry stomach and bowels again. Hope you get it sorted soon. xx

  • Thank you xxx I hope you manage to get the injections restarted soon. xxxxx

  • Of course it has nothing to do with endo !!!!!!!

    Why else would there be at least one colorectal surgeon on staff at every single accredited endo centre in the UK.

    He needs his head banging with a heavy encylopaedia.

  • I would *like* this comment if I could.

  • I would "like" this comment too as doodah says! Made me chuckle with the last sentence!

    Once again thank you for your kind words x

  • Thank you everyone for your comments. I thought I wouldn't be alone in being mucked around by a gastro dr and being told the usual IBS! Less teary today and bit less moody which will please my hubby after I snapped back at him last night over a ridiculous thing!..I did apologise tho not long after and he understood why.

    Once again thank you xxxx

  • I too was told I could not be experiencing Gynae/Endo pains if I wasn't menstruating ( I have pain every day). I went above the Registrar I saw and wrote to the Head Gynae, he booked me in for a Lap, and lo and behold there was Endo on both Ovaries!!

    See my question "Does anyone else suffer with lower back period pain, without the period."

    If you decide to do this, arm yourself with proof of your research (web links etc) especially using NHS sites as this is then their own protocol. Highlight the proof of your exact issue i.e.:

    uclh.nhs.uk/OURSERVICES/SER...

    Endometriosis is a condition where tissue similar to the lining of the womb (uterus) is found elsewhere in the body. It is most commonly found in the pelvis (in or on the ovaries, behind the uterus, in tissue that holds the uterus in place and on the bowel and the bladder) but it can be found in other locations such as the chest cavity, lungs, abdominal wall scars and the navel.

    That was just a quick search, I am sure you can find something detailing more involvement of the bowel in Endo.

    Never allow yourself to be fobbed off!!

    Hugs xx

  • Hi Amb43. Thank you for your advice and kind words. I will take a look at that link and also your blog you mentioned.

    Yeh I have been looking up endo on various sites to get as much info about the condition. Was doing for my own sake as wanted a better understanding and to be able to explain it better to my friends and family. However, like you say, it has become more about needing the info to be able to fight my case to dr's who don't understand or are ignorant.

    Thanks again and I hope you are having "good" days.

    Hugs xx

  • Ladies with bowel endo or suspected can read this

    mjwcooper.com.au/patient-in...

  • Thanks for that. Once I got thru some of the very medical terminology it was very useful and goes to show with the bit about endo affecting the bowel that I am not going crazy! Will def quote that back at the useless gastro bloke I saw when I write that letter when the time comes!

    Thank you my caped crusader! :-)

  • I too have been passed between gynae and general consultant. General consultant thinks IBS although medication doesn't help. Gynae doesn't seem convinced it's endo even though they found an old spot via a laparoscopy and Zoladex is working a treat! So frustrating.

  • Sorry to hear that you too have been passed from one dr to another, neither of which giving you much of a def answer! So frustrating. That is silly for them to say it not endo if your Lap showed it and you are responding to Zoladex!

    Thank you for sharing your story and responding to my blog.

    I hope the drs begin to listen to you soon. x

  • hey hun

    Just be strong i know its easier said then done but demand your rights...i mean they're doctors you'd think they would now that theory is not better than practice if there are all these women with endometriosis and pain in the bowel area then how can they explain that....I don't get them either sometimes. If you try to hit them with research they give you that ( are you for real) look....arrgh What area are you in hun?

  • Thanks amera.

    Yeh it makes no sense does it and so frustrating. I will try be strong. I am going to write a letter to the gastro dr after the endoscope and MRI he wants doing in April. Just to tell him not to be so hasty dismissing it next time and mention quotes from endo websites and links to academic research. A fab lady on here has given me the oomph to do this and help with links.

    I am in the Lincolnshire area, imbetween Sleaford and Boston.

    Hope you are ok today. x

  • Yeah write it...I had a really bad experience when i hd my second child the hospital kept saying that my aches were just the milk coming through and didnt even take my spd seriously..i regret not writing a complaint.. i should have ..i might still do that..I tell you what you write it and i'll write it lol.....

    marking papers at the moment..sitting on hard surface makes me feel bruised down below...is that normal with endo?

  • Sorry to hear u had a bad experience with your 2nd child. It so annoying when dr's don't listen. We shouldn't have to complain! Will let u know when I have written my letter!

    I know how tedious marking papers can be. My best friend has told me all her woes about it. I am not sure if it is a sign of endo or not, what u describe. I am not saying it isn't cos I really don't know. But it prob is cos endo has so many annoying traits! Hope u feeling better today x

  • I know the feeling, my gynae said it must be my colitis that's causing my pain and gastro thinks its my endo. I think they're both connected as they're both inflammatory.

    I was told I had IBS since my teenage years. I persisted will my doctor and kept food and bowel movement dairies and bowel symptoms are worse at the time of the month.

    I'm been diagnosed with microscopic colitis after endoscope three years ago.

    Your symptoms sound very similar to mine.

    Hope things get better for you soon

  • Hi psychosue.

    Thank you for your response. Much appreciated. Sorry to hear you suffer from microscopic colitis as well as endo! But glad to hear you know what your body is doing and can try deal with it. I am due to have an endoscope of the stomach and an MRI of the bowel in April. Shall see if anything found. Like you, my symptoms get worse at the time of the month.

    Hope you are having a good weekend and once again thank you x

  • I know how you feel I was sent to a gastro dr and he told me there was nothing wrong and it was probably just IBS I was not even given anything to try and help my symptoms and he closed my file and didnt want to see me again.

    2 Years later I am still here with the same pains which are ten times worse, I literally had to beg the doctor to refer me to the gyno, as soon as I got to the gyno had the examination and told them all my symptoms they refered me straight away for a Lap I did not even have to ask for one which I was pleased about because it kind of made me feel like they may think it is endo not just IBS thats why they want me to have the lap.

    Sometimes I feel like doctors dont really listen to how you actually feel they just try and tell you how you feel and what you have when really your in this body everyday you know if there is something not right.

  • Thank you for your response to my woes. I am really encouraged by your referal to the gyno and the gyno wanting to do a Lap. Gives me more confidence to fight my case and give me some strength and that I am not going mad!

    Yeh the gastro bloke I saw has given nothing and wants me to have an endoscope and MRI, which I am due to have both in April. After them I will be going to my GP and asking to go to a gyno again.

    Yeh we fight to be heard re our pains and then we still have to fight to be listened to. Not mentioning the fight with our own bodies, mind (emotional/psychological), social life and work life! (I hope things have settled a bit for you at your work and the silly lady isn't causing you more upset!).

    Hope you are having a good day today x

  • I am having a really terrible day today, it is so hot in our office which keeps sending me into hot flushes and makes me so tired I cannot stand it. Also its that time of the month so I am in agony its so annoying.

    Have my lap next month fingers crossed so may start getting some answers. Although think might start trying for a baby at the end of the year, dont want to keep risk leaving it and if it is endo it gets worse then my chances get slimmer and slimmer so we have decided to try for a baby yay.

    You have just got to stick to your guns, keep going to the doctors every week if you have to, i did at one point I was making appointments twice a week for like 5 weeks straight I think in the end they didnt refer me cause they needed to I just think they got sick of seeing me sat in there room again haha,

    I am glad I stuck to my guns as when I seen the gyno at my first appointment I was only in there 10 minutes and she said straight away you need to have a lap, actually felt like someone was listening.

    I just wish all these symptoms would go away and I could actually just have a day where I could wake up and feel normal and not in agony or tired, just gets me down so much, especially having to come to work, that stresses me out so much, going to use my time of after the lap to find another job haha. x

  • sorry to hear you are having a horrible day today, bless you.

    That is fab you are thinking of beginning to try for a baby. My husband and I have been trying for a baby for 9 months now. As cannot take anything (the pill, medication etc) some days can be horrible as cannot ease the pain etc.But I keep telling myself it will be worth it if I manage to get pregnant. It is great u will be having a lap soon as that will be able to show if any of your tubes etc are affected

    so u will know if will be harder to get pregnant.

    I know what you mean about wanting to have a normal day. It does get us down and frustrated. I haven't been able to get down to see my mum, sis, dad etc in Poole for 3 months now! Don't know if will make it for easter either! Only in my dreams am I not in pain or suffering from other symptoms! Then wake up and it back to reality! Your work situation will def not be helping with the stress etc and I so wish I could help you. Hope u find a new job soon..or the twit who made it so rubbish there leaves instead!

    Sending you big hugs x if you ever want a chat feel free to message me. x

  • Awww I hope you fall pregnant soon haha, I really want a baby within the next 2 years, although making one isnt so easy, sex isnt the most pleasent of things lately so painful, so its annoying to.

    I have been applying for loads and loads of jobs just not been hearing anything back its frustrating, I think its because I am thinking to hard about getting a new job that I am not getting another one haha x

  • I am like you re sex. I have always found it painful. So we are not "at it like rabbits" and try time it for during ovulation. But then it also comes down to how good I am feeling that day with all the other symptoms of endo. It is another frustrating part of the endo demon.

    I think it is just so hard these days to even get an interview for jobs being advertised due to the climate at the moment. Also a lot of places already have someone in mind who already works for them. It another frustrating aspect to life. I hope you get some replies soon. As can totally understand you wanting to escape a workplace but cannot without another to move too! x

  • That is the biggest load of poop I've ever heard. If you have endo on your bowel (adenomyosis as it's known when the endometrial lining grows outside and is on organs) then it can and will cause the symptoms. I know this because I have this and I am due to have a hysterectomy in March.

    It makes me so angry when gps dismiss things. If you don't know about something don't guess! Hope you find a doctor who knows what they are talking about xx

  • Thanks so much for your reply. Yeh it was def the 'biggest load of poop'! Yeh it so frustrating when gp's/drs don't listen to us when we know our bodies. I tried the tablets the stupid gastroenterologist said would do the trick and surprise surprise they didn't help at all!

    I am currently seeing a Gynae with regards to infertility at the mo who seems to be more understanding and doesn't question how I am. Which makes a nice change after the many many years of fighting with various drs etc.

    Good luck with the Hysterectomy in March. That must have been a big decision for you and very brave. Hope the recovery is quick for you and helps ease your endo pains. xx

  • Thank you hunny. It was surprisingly a very easy decision. I am no good to my daughter because I am in pain all the time.

    This way she gets her mum back and if we decide to have another baby we will adopt. I am worried about the chemical menopause but it can't be worse than this.

    Best of luck with your fertility treatment xx

  • Sounds like the right decision for you, esp as means you can be hopefully more well to spend time with your daughter. That is my fear if I do manage to have a child, how I will cope when it is hard enough to cope with endo and all it brings at the mo.

    Yeh I not too sure what the chemical menopause will be like and I def hope it is better than what u r currently going through x Good luck and best wishes again x

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