Anyone else have pelvic pain when needing... - Endometriosis UK

Endometriosis UK

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Anyone else have pelvic pain when needing to go to do a number 2?

melwise42
melwise42

Hi all!

I was told 5 years ago I had endometriosis! I am managing pain better, but for the last year or so I've had urgency and pelvic pain whenever I Need a poo! I have been told "it's just endo" , I was told I had faecal urgency but after changing my diet it did nothing do that was ruled out. I did a Sibo test which was positive but I don't really have sibo symptoms. One doctor agreed to give me anti biotics, whilst another doesn't think I should go on them, and suggested I have IBS, and to try pro biotics instead! So confused!!! Has anyone else had similar problems? Not sure what else to try before risking 6 weeks of antibiotics!!!

20 Replies

Hi, sorry to hear what you're going through. Doctors can be a pain in the rear.

Are you under the care of an endometriosis specialist Gynaecologist?

Was it a Gastroenterologist that referred you for the sibo test?

Aside from pain when passing stools, what bowel/gastro symptoms are you experiencing? Does the bowel pain when passing stools get worse during your periods?

When I was looking into sibo I found alternative treatments. From my research colomint tablets 3 times a day before food can be effective for sibo. Can't remember how long, think a couple of weeks.

I have bowel endometriosis and I get pain before and during passing stools.

Be careful with the probiotics as If you have sibo it will make it worse.

Problem is its hard to diagnose so it could be IBS, Sibo and many other problems. The symptoms caused by bowel endo are very similar to these other conditions. I ruled out IBS because I've tried all the treatments and none work. (Nevertheless, despite having confirmed bowel endo I keep being told by some doctors that I have IBS)

These doctors that diagnosed all of the above, are they GPs?

melwise42
melwise42 in reply to TennisAM

Thanks for sharing your experience with me! I am not currently under any gynaecologist as was a few years ago, May be I should ask to be referred again? It was all GPs that I've been getting help from except I did the sibo test myself after reading in to it and listening to podcasts about it! I don't have any bloating which seems to be the main symptom! The pain does get worse during my period but tends to be every day once in the morning! But then today I didn't go at all which is really unusual and then makes me feel more confused! It's not as bad pain as it used to be, as used to almost pass out, but it's the paranoia of not being near a toilet all the time, if you get that too?

I will look into bowel endo, I know my cist causing the endo is near my bowel, but if I can get an official diagnosis, that might help settle my mind rather than going through all these different doctors! Thank you for your help, it's a relief to know I'm not on my own!

TennisAM
TennisAM in reply to melwise42

Hi, i definitely would ask for a referral. If you have a bsge endometriosis centre near you tell them you want to be referred there. Its important you are referred to a gynaecologist that understands bowel endo. They will most likely refer you to a colorectal specialist and a Gastroenterologist.

You can specify who you want to be referred to so worth looking at the endometriosis specialist gynaecologist profiles and reviews. The bsge endo website will tell you which consultants are part of your local endometriosis centre. You can check their reviews at iwantgreatcare.org and doctify.

Hope you find a really knowledgeable consultant that can help. A Gastroenterologist could help too as they can do all the testing to rule out every other condition it could be.

Good luck x

melwise42
melwise42 in reply to TennisAM

Thank you so much for this, I had no idea I could look this up, there's a centre near me :) I will call my doctors tomorrow and ask to be referred, this is making me feel less worried already :)

TennisAM
TennisAM in reply to melwise42

You're welcome. Make it clear to them you have signs of stage 3 or 4 endometriosis. These latter stages are dealt with by bsge centres. Good luck. If the GP refuses, you could pay for one consultation privately with your preferred consultant and ask them to add you to their NHS list. Its the backdoor way of getting into the bsge centre. x

TennisAM
TennisAM in reply to melwise42

I meant to say, have you been shown how to sit correctly on the toilet when passing stools? It might help. Happy to send you the details from my physio via DM if you message me.

melwise42
melwise42 in reply to TennisAM

Is this the special step? I ordered this and have been using this?

TennisAM
TennisAM in reply to melwise42

Yes the step but there's also a method to ensure you don't strain. That's the video I was sent by my physio.

I have been known to sweat, go white and pass out severely on the bathroom floor, in this situation due to the appalling pain of my pelvis and cramping. It’s unbelievably scary because the pain is off the chart. I would say having read experiences of other ladies on here that it’s quite common.

Yes I've totally had this experience too! It's awful when you are in public, one time I was 15 minutes walk from home and had to walk whilst cramping , sweating and screaming, finally making it home and having awful diohereea. Endometriosis really sucks :( I will go through this forum I think and reread people's experiences!

I have stage 4 bowel Endo and I experience pelvic pain when I have gas and when I need to do a number 2, the pain comes on as bad cramping and then I have an urgency to go to the toilet. I also find it painful when actually going to the toilet but thats much worse when I’m actually on my period

Me too! I didn't realise the urgency was part of endometriosis, as it just developed in the last year or so...I am sorry you suffer with it too :(

Hi Mel,

Yes I have stage 4 endo and I too have severe pain just before needing a number 2. It literally comes like a bolt out of nowhere and I double up as the pain is that bad, I have to get to a toilet straight away and go. I wouldn't say that I experience pain whilst passing like others have described though, mine is more just moments before almost as if I can feel the faeces moving and the pain is such unbearable agony so I have to get to the toilet that second......I dont know if thats the same for you?

melwise42
melwise42 in reply to kittykins7

Hi yup this is the same for me too. Sometimes I try to ignore the pain as it's always during breakfast and it just makes the rush sensation first! Do you have it with loose and normal stools? As i tried cutting out foods to stop getting loose stools, but still got the pain and urgency no matter what!

I have this too, but it has improved since seeing a pelvic floor physio. I also try and take regular laxatives to prevent conspitation.

It doesn't seem to matter with me whether they are normal, loose, or hard stools. And yes, like you too mine seem to be in the morning more. I'd describe the feeling as if my bowels and uterus are stuck together and pull against each other, (which they have been before previous surgery), like the back and the front in a tug of war, and when the stools try to pass through wherever it is they go when they are ready to be passed, at the very end, it becomes very painful, as if there is no room for it to get past.....thats the best I can describe, once the pain comes on it will not leave and stays so bad i have to struggle to a toilet, as soon as I've been the pains gone.

Thats interesting bubble about the pelvic floor physio helping. Do you have any tips on good exercises we could try? ......Also, have you thought about having gluten free porridge oats instead of laxatives to get things moving......the porridge oats are heavy and help in clearing away all the debris in the gut, they help clear out some of the crap that can hang around in the gut and flush things through the system.....that and plenty of fibre which you can get from greens like spinach, kale etc will soften the stools instead of laxatives maybe.

melwise42
melwise42 in reply to kittykins7

Wow that sounds absolutely awful, mine is not as bad as that, as my stools come out quickly, I actually need to bulk mine up more, but that sounds so painful for you :( I have heard about kegels before, I wonder if that one of pelvic floor exercise would help?

kittykins7
kittykins7 in reply to melwise42

I've just had a look re kegels and thanks thats a good tip, ill try some.Pro biotics are supposed to be good in helping bulk up stools. And fermented foods.....Kefir is really good, I get a nice mango and passionfruit one from sainsburys its flavoured yoghurt thats fermented and is really good they also do 🍓 as well. Nuts, seeds can also be good and you can add psyllium husk as well to cereal or smoothies which is good......all we can do is try i suppose, but its good that we have this website to at least share ideas. X

melwise42
melwise42 in reply to kittykins7

Ooo I have never tried kefir, I will get some this weekend, thank you for the tip, I do eat sauerkraut sometimes, so maybe I should have that more too! Yes this is one of the main benefits of having a community online is sharing ideas :)

8ve not tried sauerkraut either, but I know its supposed to be as good as kefir.....sounds awful tho, what does it taste like? 🤢

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