Do you think I have endo? I'm worrying? N... - Endometriosis UK

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Do you think I have endo? I'm worrying? Nobody takes me seriously:-(

Sarahlou23xx profile image

I'm 31 and for years I've been scared I have endo.

Basically for years I've had bowel problems.

Most days il wake up and after breakfast il have to rush to the toilet and empty my bowels,then other days I might be constipated,I have excess gas and must pass wind hundreds of times a day.

I suffer with anxiety and have been told it's IBS.

I've read it could be endo?

My periods are regular every 28 days and first two days are medium flow,a little pain but nothing painkillers don't take away.

Apart from that I get no pelvic pain or anything.

I'm scared that the bowel problems might be endo.

I don't want to ask doctor for a lap and put myself through that if its not necessary but I won't know for sure till I've had one.

It doesn't affect my life in any way but I'm scared as I want children.

Then I read sometimes your bowels can stick to your ovaries or what if my tubes are blocked etc.

Do you think I have endo?

Is it worth going to doctors again?

As soon as I say I have no pain and my periods are regular,they feel my stomach and say your fine.

11 Replies

Everyone's symptoms are different so it's difficult to say. The bowel symptoms you described can be symptoms of endo but as you don't seem to have any menstrual or gynae related symptoms, it doesn't sound like it to me (I am not an expert but I had fairly extensive bowel adhesions and pelvic endo). Usually with endo you would get either (severe) period pain, heavy periods or long-lasting, pain on sex, chronic pelvic pain etc as well. Again though, it varies greatly. Have you ever been referred to a gastroenterologist? Also are you on the pill?

Sarahlou23xx profile image
Sarahlou23xx in reply to Endo101

No I'm not on the pill and the doctor won't refer me for any further testing.

My periods normally last 5-6 days.

The first 2 days are medium flow

The 3rd day medium /light

The rest very light.

The first two days are when I get the cramps (but painkillers take it away)

Also I get low back ache whilst on my period

in reply to Sarahlou23xx

Periods with endo are very heavy and with clots, an average flow for me is 1 tampon every 15 minutes when I first started at 8, every 30 minutes to an hour. Periods are also long, mine lasted 10-16 days before I went on the pill back to back. You would also experience spotting in between.

With bowel endo you would have changes in your bowels through the month. For example during your periods (and a few days before and after) you would get diarrhea since the endo on the bowel starts to 'attack' it and causes inflamtion which makes the bowels move rapidly, you any have heard of a stimulat laxative, that's essentially what it does, the endometriosis tissues stimulates the bowel movement.

Than during ovulation with the introduction to progesterone you would experience constipation.

If your bowel issues don't follow this than it isn't endo.

Bowel endo also tends to cause severe pain with intercourse.

Cramps with endo do not feel like period cramps, a period cramp kinda feels like after an abdominal workout since it's your uterus contacting. This can also cause low back pain since the uterus is a muscle that is apart of the pelvic floor. And if the pelvic floor tenses your lower back will follow suit, if it's just a back ache there's nothing to worry about that's normal.

Change in bowel habits like what you describe is a sign of inflammatory bowel disease (not IBS) which needs to be checked out by a gastrointestioligist and it can be easily ruled out by ultrasound and tests, I saw you got blood test however I would ask for a copy sine diffenrt labs have different averages. What may be within range in one won't be in another. I was told my FSH was fine by the lab but my gyno said it was high and my doctor said it was okay. Speacilsits know the proper numbers better.

Thyroid issues can also wreck havoc on the whole body.

Switch GP's if they won't investigate you for anything.

My aunt's wouldn't investigate her for 10 years and she found out her bowel issues were from celiac after one simple blood test.

Make a food diary, eliminate foods, write down if there's a change in your symptoms. Dairy and wheat tend to be triggers for bowls issues.

Check the colour and consistency of stool, large stools are a sign of celiac.

I agree with Angie I know some people who's bowels act up when they get upset.

I have bowel endo and I have bowel symptoms but I also have excruciating pain (which can't be controlled with over the counter pain meds) during my periods, very long very heavy periods and various other symptoms. What you describe doesn't sound like endo to me but then I am not a doctor. If you're really worried you need to see your GP. Have you been tested for other bowel disorders or had a pelvic ultrasound or colonoscopy?

I've had blood tests and a stool sample which all came back fine.

The doctor has said he has no reason to do any further testing.

I have stage 4 endo and my bowel is stuck to my uterus which has caused similar issues for me. I have had two operations and will go back in tomorrow as my Pouch of Douglas, which sits between the bowel and uterus, has sealed over due to the damage from scarring, and has filled with fluid that cannot escape. This has been putting pressure on my bowel and bladder.

My reason for responding to your post is that you mentioned you have anxiety. I have anxiety too and would find myself in the bathroom multiple times per day, always doing some form of "number 2s". My stomach also made horrendous noises which was making my anxiety worse and so on (a vicious cycle).

It got so bad last year that I went to a psychiatrist to be properly assessed and diagnosed. I was put on medication which I have taken daily for 7 months.

The medication has completely stopped my anxiety which has been life changing for me.

But the other amazing and unexpected effect of the medication is that my bowel issues settled down. The stomach noises have completely stopped and I have not needed the bathroom near as much as before the medication. It turns out that my anxiety was causing the bulk of my stomach and bowel problems!

Just thought I'd mention this as while I do have severe endo with bowel involvement, the anxiety was making everything worse.

Please know that I am not saying medication to treat anxiety is the answer for everybody however in my case I did not have a quality of life and was not getting sleep.

Maybe consider whether your anxiety is playing a part in your bowel issues.

Good luck x

As you're concerned, why don't you ask for a referral to a gynaecologist or gastroenterologist (or both), you can find out what's going on?

Good luck x

As other people have commented, see another GP They are generalists after all and a different GP may be more familiar with your symptoms and more sympathetic to your case.

I live in the US, so I'm unsure how things work in the UK, but here, if someone experiences bowel problems, the doctor will send them to a GI Specialist (gastrointestinal doctor). GI's will check to see if it's an intestinal problem, or stomach problem. This is usually done by a test called a Colonoscopy (I've had 3 of them, & you don't feel a thing, bcuz you're asleep from anesthesia). I'm not sure if u know what a colonoscopy is, but a thin tube is inserted into your rectum with a very tiny camera. The GI doctor can look into the intestinal tract that way, and can diagnose most bowel problems. Except endometriosis, which can usually only be seen with a laparoscopy. (I've had 4 laparoscopies--honestly it's not as horrible as u probably are imagining) So either way, whether it's laparoscopy or colonoscopy, PLEASE PLEASE don't hesitate! The peace of mind you will get after your diagnosis is well worth every minute! I want to add something else: I also have bowel problems, due to endometriosis. Mine includes severe constipation, (alternating with diarrhea, that which happens during my menstrual period). Very painful and also shooting pain up into the rectum. It's not something that you should put off, as you can also have something much more serious. I'm 39, and I'm going through this since age 16...please get checked immediately, so you can feel better and at least you'll know what is wrong. Please let me know how everything works out for you! Good luck and I'll keep u in my prayers..

I never knew I had endometriosis. I rarely had severe pain. My periods were regular. I had a uterine fibroid and had scans but the endo was not picked up until I had surgery to remove the fibroid. The surgeon found stage 4 endo.

I think you should endo to rule it out.

It sounds a lot like IBS or some other bowel issue but I'm not a doctor. A relative of mine has the same issues and he went for all the bowel related tests including colonoscopy and he actually went for a few different specialist opinions because they would say there is nothing there or its just anxiety etc. But he was getting worse, losing weight rapidly and more bowel pain and ended up finding a specialist who said he had something. I'm not sure would it is called but it's like IBS and he had to go on a strict diet. My partner also has an IBS type issue that he is controlling with the Fodmap diet. It limits what food you can eat but it makes a massive difference. Also my relative and my partner also have anxiety issues that make their IBS flair up bad too.

My partner makes sure he sticks to the Fodmap diet strictly and is seeing a dietitan or nutritionist (I forget which one) and is going through an elimination of some foods to test out which ones causes flair ups. He still has bad stomach days, especially during anxious times but he makes sure he sticks strictly to the Fodmap diet days to weeks before any anxious event I.e. travel.

It might be a good idea for you to do elimination of foods and keep a food diary and see which foods trigger issues. You could always seek another doctors opinion if you aren't satisfied with the result. You wouldn't be the first person to do that!

Hope It all goes well for you.

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