possible IBS or Endo they can't give me a straight answer. Any body else had this issue?

I have been diagnosed with what they think is IBS and Cervical Ectropion this last month, this is after 18months of going back and forth to the GP (initially being told some women are just unlucky) with pain during sex, bleeding after sex along with a dark discharge randomly through the month, stomach cramps that come and go very quickly always about the time of my period though, trouble urinating pain when I urinate and pain with B.M struggling with both constipation ( 3 days before my period ) and diarrhea (bang on midcycle) I am keeping both a food and pain diary with no food in perticular setting it off and having cut out and reintoduce certain food types. With no luck. The pain has been about 2 -3 years I have been suffering it but don't have particularly heavy cycle but I was put on the pill 5 years ago due to an irregular cycle, at the time I was told it would settle as I got older but I have never actually come off of it. I did have a miscarriage April last year and that was put down to PID and various recurrent infections that I was always given antibiotics for and never found made any difference to the pain or symptoms. I guess I'm just a little confused as from what I have read this sounds like endometriosis but they are so unwilling to test for it. Is a laparoscopy the only way to diagnose? I just want an answer to what I have so I can go about editing my life to suit cause at the moment no amount of change is helping?

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  • I eventually after years of annoying my doctor about pains and swellings had an internal done (horrible) found nothing other than inflammation so i was then sent for a scan to be done but nothing showed up on the scan other than normal sized cysts not big enough to cause the swellings and pains. When i went back to then doc after it she was reluctant to send me to gyno but after a chat and i told her i want to be as i have this pain. I was always fobbed off with it'll just be IBS even the gyno said this to me until i had my lap op and he found i had a lot of endo and it had covered my bladder as well. With me it was the only way i was diagnosed and at the time he removed as much as he could.

    It might be the only way for you to get a proper answer as to what is wrong and is going on inside you. Hope you get it sorted and ask your doctor to be referred to a gyno to get some answers

    xxx

  • it took me nearly 30 years of complaining to eventually get to the stage where i had surgery, and everything you describe matches me, except that my periods by then were gushing and long lasting and erratic.

    The dark discharge is just the old menstrual lining coming away later on in the cycle and while it can be a symptom of gynae issues, it is also normal as you get older and when you are on the pill or other meds to control your periods....that side of it is NORMAL ..so I just want to stop you worrying on that aspect.

    I would suggest try taking the pill back to back to stop having monthly bleeds and see if that helps ease symptoms. It is what you would be doing after any surgery anyway.

    each period has the potential to send backflow of menstrual bleeding back up the fallopian tubes in to the stomach and irritating the organs that they land on and thus causing pain.

    There are some who theorise that it can also be a means of spreading endo too.

    So from the point of view of managing the endo (let us assume you do have it) it can be beneficial.

    It doesn't however replace getting a proper diagnosis and surgical treatment for any endo lesions that are found. And at this stage, given your symptoms you should push for a referral to a gynaecologist and then when you see him/her push for a diagnostic laparoscopy. It is the only way to be sure of a diagnosis if you do have visible endo lesions when they look in you. It is not a fool safe way to be diagnosed but if you have it and they see it then at east you do know for sure what you are dealing with.

    IBS is not a diagnosis, it simply means they suspect something is irritating your bowel and they haven't a clue what it is. Could be something you eat or drink, or could be something medical such as endo or a cysts or an endo-cyst pushing in to the side of the bowel. However the cycle of diarrhea and constipation through the month is following a pattern for you, so it is not likely to be something you are eating and very likely connected to the menstrual cycle by some means.

    you are on the right track keeping a symptom diary. Definitely need to keep pushing to see a gynae and get a proper diagnosis. It can take a mighty long time but no one else is going to fight your corner except you. It can be soul destroying but you know your body the best and what it feels like to go through this each month.

    Best of Luck (you will need luck)

  • Thank you both for your answers. I'm now having an ultrasound on Tuesday to see if they can't find anything.

    Ill try taking the pill back to back see if that settles anything.

    I will be pushing for a diagnostic laparoscopy the next time I'm at the gyno as it was him that told me ibs.

    Deffinatly feel those wishes of luck thanks! X

  • This is a well known frustration for endo and adhesion, sufferers.

    A leading endo gyne gave a talk a couple of years ago and said "IBS does not exist! It is a lazy diagnosis by Gps given to what is effectively an underlying gyne condition" However, since that mindblowing speech, I have found many doctors still say IBS does exist, all very confusing! Until often years downline they do a lap after ultrasounds, CT scans etc and actually find something, they will probably suggest it is IBS. The jury still seems to be very much out on this!

  • IBS is a known condition that has FOOD triggers. for women with endo, the clue should be in how regularly the pain co-incides with your cycle. I told my gp and the consultant about what pain appeared at which point in my cycle.

    the first GP was adamant that it was IBS related to my cycle but there were no triggers (I eat a varied diet so it was easy to rule out). went to a different GP and then the consultant who found mild endo.

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