Having investigations for possible Endometriosis tomorrow - what do I need to know?

[GladitsnotJustMe]

I've suffered for years with Ulcerative Colitis which developed into a general IBS. Since coming off the pill 2 years ago, the IBS symptoms have got worse and worse, to the point that I was having the runs most days.

I have always been aware that the IBS was worse around my period - but in the last few months I noticed small blood clots in my stools, and bleeding from my bowels at the same time as my period. I don't get this bleeding at any other time of the month.

A few months ago, I experienced a searing pain in my abdomen - right around where my appendix is. I collapsed, vomited, and had to call my DP to come home and pick me up off the floor. By the time I got to the GP later that day, the pain had subsided, and they decided it wasn't appendicitis because it didn't hurt when they pressed it.

Since then, I've had no serious pain, but do get niggling abdominal pains from time to time. I do also get serious period pains for the first day or two. The serious pain episode happened during my period, but a few days after the usual period pains have normally gone away.

My GP has now referred me to the gastroenterologist for investigations (pipe up the bum, not a camera.. TMI?) to have a look at my bowel and look for a possible cause. She thinks it's either a return of the colitis, or Endo.

Because of the period related bleeding, and the pain episode - I'm convinced it's Endo - which upsets me as I'm TTC

Anything I need to ask / should be prepared for tomorrow?

It would not actually totally surprise me at all if all your symptoms were due to endometriosis; it can be misdiagnosed as IBS as well. Pill usually dampens all endometriosis down. Hopefully tomorrow's test will reveal something definite.

Any symptoms that are cyclical in nature and get worse up to and including menses should be checked out further to see if endo is the root cause.

You ought to have a referral to a gynaecologist as well now and ideally you need to see a gynae specialist who has a specialist interest in endo as well. Ask this person lots of questions with regards to their experience in treating endometriosis.

I would start keeping a daily pain (note pain from 1-10) and symptom diary as this can help with possible diagnosis as well. Note all that has happened to you beforehand in terms of pain; the details in your first three paragraphs should be noted down as well.

This website may also prove helpful to you as well www.endo.org.uk

Do let us know how you get on.

Good luck for tomorrow

I was diagnosed with endo 15 years ago by laparoscopy and I had lesions all over my abdomen including on the bowel and bladder. I suffered with cyclical IBS, also certain foods set it off, particularly chicken and orange juice (concentrate rather than fresh). Within and hour of drinking orange juice I would be doubled over with severe colicky pain and subsequent runs.
I had fertility problems but eventually had my DS. I have had Mirena coil since he was born and endo has been quiet. I still have to be careful with what I eat and due to the severe scarring on my bladder I sometimes have trouble with retention.
I would definitely keep a diary but also make a note of what you are eating to see if any foods are connected.

I was under the impression that the food triggers was more indicative of IBS, rather than Endo - so it's interesting to read about your experience Willdo

I have started to notice certain foods trigger it off, and I will definitely start a symptom diary. And will note down what I've written here - thanks for the suggestion Attila

Thanks for the support - I'll let you know how I get on

NOT looking forward to the procedure - I had the same thing done a few years ago, and in the waiting room I saw an old flame of mine that was more excruciating than the procedure itself!!

Just to say I have endo (patches on my bladder and bowel - I used to get IBS symptoms and cystitis symptoms with every period, nice). I was diagnosed just as we started ttc and expected problems, but actually I needn't have worried as I conceived very quickly. I now have two dcs, both conceived within three months of trying. Since being pregnant my endo has much improved and my symptoms are much less severe now. So there is hope, good luck x

Were you diagnosed through a Laparoscopy?

My GP has sent me for a sigmoidoscopy I think, to investigate the IBS, but if they suspect Endo I guess I'll be referred to a Gynae and have to wait for another appointment?

IBS is what is says a bowel irritated by something. In my case I have endometrial patches on the surface of the bowel. The patches respond to hormones in the same way the endometrium does so foods which mimic hormones affect these patches as they are absorbed. This in turn causes irritation in the bowel wall.
My Gyni always maintained that all women who were premenopausal and suffering from IBS should be checked for endo.

Sorry not very clear. I think 'women of childbearing age' would be better way of putting it.

It could be coeliac disease? That is triggered by gluten and wheat and can give you diarrhoea, bleeding from bowels and pain in the appendix area. It is often misdiagnosed as IBS and is surprisingly common. You said you noticed food triggers? I'd have a look into the signs and symptoms and see if it relates to what your experiencing. Good luck.

I haven't noticed any links with wheat - it's fibre, beans, pulses, seeds, tomatoes, raising, fresh fruit & veg that trigger me.

But the bleeding is only when I have my period - which is what makes me thing it's Endo.

Interesting what your Gynae said WillDo, sounds like it's very undiagnosed eh.

We'll see what they say tomorrow

Sorry, 'Undiagnosed' isn't a word - under-diagnosed..?