IBS or Endo?

Hello ladies, I'm new to this forum business, and just looking for some advice and a chat with people who have first-hand experiences. I'm not even sure if I actually have endo, but the condition was mentioned as a possibility by my GP and consultant recently.

Has anybody here ever had their endo symptoms confused with IBS by medical professionals? I was diagnosed with IBS 4 years ago, and since then my symptoms have continued to get steadily worse. No traditional IBS medication seems to relieve my symptoms and I've tried excluding all the problem food groups to no avail. Plus, my IBS symptoms go crazy around the time of my period.

Early last year my GP finally picked up on my gyne symptoms too - I've always suffered from painful, long, heavy, clotty periods, and they've been getting worse since I was diagnosed with IBS, with lots of spotting and missed periods. After a blood test I was diagnosed with some ovarian cysts. Then after several referrals the consultants I saw said I 'could have endo' and have put me on the pill to help my periods. I've been feeling slightly better whilst on the pill too, less bloating and more energy (although constantly bleeding on the mini-pill, argh!).

Given a checklist of 'typical' endo symptoms I have them all, except one - the pain I experience is relatively mild (I think) in comparison to what a lot of you ladies describe here. I know endo differs from person to person, but is it possible to have endo with only mild pain? Don't get me wrong, when I have my period I have HEINOUS cramps, but the rest of the time I only get mild cramping/back/leg pain, which is annoying and draining at times but it doesn't sound as bad as what some of you others describe.

My GP just shrugs his shoulders when I ask him if it's IBS or endo.

Another question I have is, is there anything you can do for episodes of tiredness? The last time I had my period I was so wiped out I couldn't stand up for 2 days. I asked my GP but all he said was "oh, poor you".

4 Replies

  • It sounds like you have endometriosis, very sorry. I think everyone has been told they have IBS by doctors as it's the only thing they can think of to say to us. Personally I don't beleive there is such a thing as IBS, although people do have troubled bowels but really it's a fob off to all. X

  • Hi Lady 14,

    I had about 24 years of painful periods that got much, much worse as I got older, AND particulalry during the times when I was not taking the pill. However, 'yes' I had nothing like the pain that most of the sufferers on here are experiencing. When it got worse after my husband had a vasectomy - so it was the longest time I'd gone without the pill - I began to have cramps at other times, and pain that was described as 'most likely ibs'. It was only when I began to have breakthrough bleeding in 1994, that my GP wondered about ibs. That was confirmed by a laparoscopy - and you need to have a laparoscopy for a full diagnosis, an ultrasound scan is not enough. My gynaecologist said the scan is more to rule out other conditions.

    In my case I went back on the pill, and was okay until I had to stop taking it at 50. Then, things got so bad, so quickly, that I had another laparoscopy to remove the endo. The consultant said he was astonished that I was able to function, and was having relatively little pain, given that the endo was so extensive. But he did say that the amount of endo has little to do with the amount of pain. The pain got bad again fairly soon after that, though, and I had a mirena coil inserted just over 4 years ago, and it has been bliss since then.

    I think you should talk to the advisors at the Endo society, read up as much as you can about the condition, and then go back to your GP and ask to see an endo consultant - somewhere along the way I think there should also be an ultrasound to rule out other things.

    I hope you get sorted soon, but don't please don't put up with the pain and misery - we all need to make more of a noise!

    If you read the posts on here, and extrapolate to all the women who don't post or question, then it seems likely that millions of women are constantly being ignored - and not just because of endo. Many of the autoimmune conditions that have sites on Health Unlocked have a high proportion of women sufferers, many of whom are also being ignored ... and it is really beginning to make me mad.

  • Hiya, I agree with the two ladies above. I had IBS like symptoms for years before the period and daily pain got really severe. In my early 20s I could cope with the reasonable cramps of my period, late 20s early 30s the pain gradually worsened month by month, was interrupting my life and work, was pretty bad BUT then mid 30s the pain became DEBILITATING, quite literally - tear my hair out pain.

    After my two laparoscopy surgeries, the pain is still here and pretty bad on some days but not nearly as severe or debilitating as it was. The fact your symptoms are exaggerated / worsened during your period is also indicative of endo. You really need to get this under control before it worsens,

    Did you see This Morning yesterday? Good discussion about Endo, and, here is a link to the website because they have also provided a great number of links to Endo charities and other information pages. I urge you to look at these.


    Print off some documents about endo from the charity websites and bring these to your GP, and demand a referral to a gynea. BUT, if it's mainly IBS then you also have a right to demand a flexible sigmoidoscopy to CHECK YOUR COLON?

    Also, what are your actual IBS symptoms?

    I presume you never have very dark stools (indicating dried blood in the stool), or long thin stools, or a lot of mucus in them? Or regular blood? If you have any of those then it could indicate other more serious bowel conditions. At worst bowel cancer (highly unlikely) to ULCERATIVE COLITIS and possibly Crohn's disease. Ulcerative colitis is not uncommon and strikes in 20s and 30s most commonly, if it's that it need to be caught and treated because it can increase chances of other more serious things. Don't want to freak you out, but I know about 3 young people with ulcerative colitis, and one very close friend who has just been diagnosed bowel cancer at 39, who was otherwise fit and ignored symptoms. This is the only reason I mention it, it's not to panic you and his situation is VERY rare indeed so please don't worry.

    It's VERY rare to have bowel cancer so pleas don't take my post the wrong way, but just because it's rare, it doesn't mean that your GP should ignore your symptoms for years. This is where disease can built up, early detection of any inflammatory condition is KEY.

    And, my bowel symptoms are just terrible at the moment, and I'm going to demand a colonoscopy or flexible sigmoidoscopy - as I am now pretty anxious about my own symptoms.

    Let us know how you get on. Sorry for the essay...

  • I also have ibs, the pain gets so severe and my ibs gets much worse at the time of my period. I'm still waiting to be diagnosed but all of the symptoms I have point to endo too - the doctors luckily have accepted that I have gynae problems as well as ibs. And I'm just waiting for more tests to confirm what it is that's going on. Hope you get it sorted x

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