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Endometriosis UK
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Diagnosed with IBS but do I have bowel endometriosis?

Hello, sorry this is my first post here so not too sure how it works!

I have been diagnosed with IBS for around 2 years now but my symptoms have been changing and after reading into Endo, I’m starting to believe I could have been miss diagnosed. I have experienced pelvic pain during sex for a while but haven’t told anyone because im too scared and nervous. But recently during my periods over the last 5-6months I’ve been experiencing extremely painful bowel movements. So painful I nearly pass out and have to lay down for a good hour before I feel myself again.

I really want to go to the doctors to talk about it but I feel like theyll think I’m just a hypochondriac and I also don’t want to experience a vaginal exam as the thought of that scares the hell out of me.

Does anyone have any advice or ideas if I am experiencing bowel Endo please?

Thank you so much! X

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So many of us get told its IBS as bowel endo symptoms are very similar but when its cyclical its probably endo. Please go to your GP, they have heard everything so dont feel embarressed in any way. Write it all down and just give it to them to read. You need to get this sorted as soon as so you know what you are dealing with. So write down dates, symptoms everything and make that appt soon. Good luck, let us know how it goes x

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Thank you for the reply. That’s great advice, I’m going to start writing everything down. Hopefully my doctors will take me seriously and help me with a diagnosis, I just get so anxious over it all. Thank you so much x

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I know...I found myself just crying at my appts and coming out feeling frustrated like I wasted my chance to get it all out so when I saw Gynae last I took my detailed symptom list and he actually understood straight away. x

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And how long did it take you to get diagnosed? X

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Well I had awful period pains since I first started at 12 and drs wouldnt really believe me but eventually went on the pill at 15. Had coil and depo over the years, had 2 kids and then hubby had snip so came off contraceptives and that was when it all began to get worse, heavy flooding etc..had an ablation which helped for 2 yrs so had a lap in 2016 where endo was found and had fibroids too so had a hysterectomy 2 yrs ago...left ovaries in and pain continued so been struggling for help since...was told IBS and then a hernia..........( private consultant) .went for op on nhs but no hernia found! So now awaiting MRI results as consultant who read the list thinks its now on bowel. Annoyingly my April appt has been moved to Aug so waiting for cancellation appt. its such a long process, so get started as soon as poss..x

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Aw I’m so sorry you’ve had to go through all that and I hope that you can be free of pain soon. Yeah with all the stories I’ve read so far it seems like it takes such a long time to get a diagnosis which is crazy because of how common and painful it is! This has definitely given me the motivation to make a doctors appointment. Thank you so much for sharing your story with me x

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Hi, I have seen and read quite a bit on endo and it does sound like endo symptoms. Book an appointment with your doctor to go and see an endo gynaecologist, someone who knows what they are talking about. I've seen 4 gynaecologists for different reasons and there's a big difference in what one told me compared to the others. So it's important you see the right specialist so you are not passed from pilar to post. You want to manage these symptoms as quickly as possible before they get any worse, but also so you know what's going on for peace of mind. 1 in 10 women have endo so it's very common. Try not to worry. X

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Thank you so much for the reply. Yes after reading things on here I think I’ll have to make an appointment. I’m just nervous that they’ll think it’s all in my head because that is how I was treated when diagnosed with IBS. Thank you so much x

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Unfortunately from all the research I’ve done and ladies I’ve spoken to on here, it seems as though many of us get wrongly diagnosed with IBS before endometriosis!

I was very scared when the gastroenterologist diagnosed IBS that I would then end up hitting a brick wall and not getting any further. I am 100% sure I do not have IBS (it’s a joke with my fiancé because he has more symptoms than I do!!)

But I followed what they said and tried the medication and tried monitoring my diet to no avail so having that bit of information helped me to be listened to and to have further investigation for endo.

It just seems like IBS is a loop most of us have to jump through on the way to getting the right answer!!

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Thank you for the reply and sharing your story. I’ve always though that it wasn’t IBS as the medication has never helped me at all, seems as if IBS is just an excuse when they can’t find anything else! Have you managed to get further with a diagnosis for Endo? X

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I agree that I think it’s an excuse. It made me laugh in my gastro appointment that he made a point of saying it wasn’t a last resort diagnosis but I really do think it is!

I had my first gynaecology appointment around 2 weeks ago and she said as the ibs treatment hadn’t worked and I had some other symptoms that don’t fit and an extremely strong family history that my problems definitely could be endometriosis but she does have some doubts as my symptoms aren’t cyclical and last through out the month so in 2 weeks I have to go for an internal ultrasound which I am dreading and then she said she will do the laparoscopy.

I was the same as you in terms of dreading any vaginal exams! The first time my GP just sprung it on me in an appointment which was good because then I didn’t have time to be anxious! But now it seems like every doctor I’ve seen has seen some part of my down belows! (Rectal was definitely worse than vaginal!!) I still get anxious but it does get easier after each time I think!

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Good luck with it all fingers crossed you’ll get the correct diagnosis!!

Aw no I didn’t know they done rectal exams too!!🙈 but that’s true and I bet the doctors see it all the time but it’s just the thought of it all isn’t it!! Thank you x

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The rectal exam was with the gastroenterologist don’t worry!!! 😅😅 x

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