What is this pain!: Hello Ladies, I was... - Endometriosis UK

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What is this pain!

LauraB_04 profile image
36 Replies

Hello Ladies,

I was struck today with the most horrendous pain both sides of my abdomen! Just suddenly came on when I was out shopping and got to the point where I could hardly walk and felt like I'd collapse!! Really haven't had such an intense pain like that for a long time! Felt like I was being stabbed from the inside :-(

It has worn off a little bit now, but just wondered if anyone has had similar??? Just came without much warning :-s

Wishing you all a pain-free night x

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LauraB_04 profile image
LauraB_04
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36 Replies

I've had this for the past few days and went to the hospital for appendicitis and got a CT scan and ultrasound which were clean. I got sent home and went to urgent care yesterday and got another ultrasound showing my lymph nodes near my bowel were swollen.

I know there's a flu going around too and my moms been complaining about the same pain just milder. This flu doesn't cause diahrria just painful bowel movements and feeling like your going to be sick right before them. I thought it was a new endo symptom but my mom got them too and she's had surgery without endo just cysts.

Eat lots of veggies and fruit low in sugar, strawberries contain a lot of sugar and I found that aggravated my pain.

Also if you were sick earlier too and might've had a flu try to eat a light diet for the next 2 weeks, I've heard if the bowel is inflamed by doctors from the flu it can be hard to digest things like lots of dairy and meat.

LauraB_04 profile image
LauraB_04 in reply to

Hi,

Thanks :-) I haven't had any sickness; it's just like my usual pain but 10 times worse! Haven't been with anyone that's had a bug luckily so it's nothing like that!

almost like my ovaries were being stabbed! And this morning I had a little bleeding when I went to the toilet, so I do think it's to do with Endo.. unfortunately :-/

My bowels movements always cause me a lot of pain afterwards at the moment anyway

x

Little-e profile image
Little-e in reply toLauraB_04

I get that, I told he Gynae on Wednesday and he's referred me to bowel specialist saying it sounds bowel related as endo wouldn't cause that amount of pain. I would go to the doctor if your not under a Gynae Consultant, no point suffering and it doesn't sound like it's something that will get sorted on its own.

in reply toLittle-e

How can I convince my GP to refer me to a bowel speacilist?

My 1st gyn thought there was something bowel related and she wouldn't refer me and all the doctors I've seen are refusing because they keep saying endo can cause bowel issues and to wait for the speacilist.

Yesturday they found lymph nodes swollen near my bowel on the right side where I'm having pain too and they said it's probably endo related or from the CT scan dye a few days ago.

Little-e profile image
Little-e in reply to

I'd start asking, exactly why they won't refer me? Then depending on their answer I'd be asking questions like... Exactly what endo related bowel issues they are talking about? What evidence they have about the bowel problems being endo related? How do they know there's not a more serious bowel problem if they won't refer you to a consultant?If I was still getting nowhere I'd ask Do Gynaecologists specialise in Gastroenterology?

Have you got a partner or someone close to you that sees how much your suffering because I find i get a better service if I take my partner in with me than going on my own that way we form a two man attack with a barrage of questions and it also helps because he reinforces what I'm saying and the consultants seem to respond well to that.

in reply toLittle-e

My mom comes with me and they don't listen to her.

I've asked those questions but they told me it's all endo because I've had bowel issues with my first period and only then. The bowel issues only lasted during my periods and started to last longer

Little-e profile image
Little-e in reply to

Maybe try and push for a referral to a BSGE center who spécialisé in Endo specifically. I rang my local one the last week to enquire about how I can get referred to them just in case I got fobbed off by my Gynae. The BSGE receptionist told me the main consultants name and said tell your Dr to put the Consultants name on the referral, I also went back to my Dr to complain about the Gynae as I've been seen by a different one each time and after my lap the one I saw for the results said they had no information for me cause there were no notes😡 My Dr told me to always tell them when I book in for the appointments I want to see my actual consultant and if I'm not happy with him ask for a second opinion because I am entitled to and if that was unsuccessful he would refer me to BSGE center.

in reply toLittle-e

I'm in Canada I've been referred to a speacilist who I'm seeing here on Halloween I'm just worried it's bowel related.

Little-e profile image
Little-e in reply to

Ah I see, I can understand your worry, I worry a lot too and I don't think the stress of it all helps either but think we know our bodies better than anyone and after years of being fobbed off decided I'll be badgering them until I get fixed it's the only way to go. Good luck hopefully they will fix you soon😊

Shelly92 profile image
Shelly92 in reply to

Seems like you just tell him the pain and what they said would be enough .

Here and again I get a dr that won't do what is needed

I just say

Ok are you willing to put in writing that you are right and send a copy to person who did the test

Usually at that point they start to bend

It's in the area

He can not possibly know for sure you don't need a specialist

If he thinks he wants to do it just tell him that you have done your research and you don't want any dr touching you

Except a specialist

If you have an HMO

Those are the ones who try not to .

But his paycheck and ins rules are not your problem.

Tell him

Do the paperwork with my results and see what ins says .

I've had many issues resolved this way

They need to know that you are not going to back down

The test said it

Shelly92 profile image
Shelly92 in reply to

I'd tell those doctors

" ya you think ?

That's my point Dr I want to know to what extent my bowels are in regards to endo .

Also remind that dr that endo is not ( just endo acting up )

It is a disease than can wreak havoc to any organs around it .

I'd say that's a pretty good Eason for me to see a specialist wouldn't you say ?

Tell him you know there is no such thing as ("just endo acting up")

in reply toShelly92

I didn't reply earlier b/c I already did that at my appointment, my mum too, we were arguing for 10 minutes about seeing a bowel specialist and the doctor wouldn't budge.

In all honesty I'm just lucky they're acknowledging there's something wrong as to telling me it's in my head or periods are bad for everyone.

I've seem numerous doctors and fought them each time about finding something or doing something and it wasn't till this year after 9 years of trying that I was finally told it was something and referred to the gyn who said I had endo.

With this disease not all doctors listen no matter how hard you push, by the time I was 14 I had seen 4 paediatricians and one urgent care doctor for over months at a time each, they all found nothing. One refered me for physch testing and the physch saw me for 10 minutes and wrote a letter to my doctor saying I was in pain.

Not to mention my dads and mums side had bad periods and they told the doctors and they went "some people do". I also had an underdeveloped uterus which was on my medical history but no one listened.

Shelly92 profile image
Shelly92 in reply to

Yes that is what the nurse told me before the dr even saw me

Like I'm so stupid

You know some have bad periods

No this is a different kind of pain Miss

I know the difference

Still I stand by what I stated

There is no reason a dr can't refer you except money and that's his problem

You will have to keep pushing I'm afraid

An endo specialist could have a bowel specialist with him

Mine did

I wonder if your dr that refuses to refer you

Does he have any plan in mind ?

Because doing nothing is not OK

Shelly92 profile image
Shelly92 in reply to

That's funny that the shrink said you were in pain

Your lucky some would have snapped at the chance to give up meds for your head

So thumbs up for that dr

LauraB_04 profile image
LauraB_04 in reply toLittle-e

Thanks for the reply :-)

I just re-read my Last op letter (see my below reply to Bumblebeth) - perhaps the 'pocketing' explains the stabbing pain in my rectum :-s

I'm just in the middle of a BSGE referral being made, which will involve a Gastroenterologist hopefully...

Hope you get some help too! x I'd be interested to hear :-)

Shelly92 profile image
Shelly92 in reply toLauraB_04

Also could have been mid cycle ovulation pain

Shelly92 profile image
Shelly92

Yes when I first had endo I would get sharp pains that sent me to the floor if I was on a step stool.

It was my first symptoms

Shelly92 profile image
Shelly92

I had those zipper pains it was the first thing that

Shelly92 profile image
Shelly92

I had those zipper pains . They were the first things I felt even before I knew what it was.

All I knew was that something was very wrong .

I got some lame reason from a dr as to what they thought it was.

I should not have listened .

I knew deep down it was something far more serious .

Bumblebeth profile image
Bumblebeth

I had the same same crippling pain - it was this pain that finally sent me to the gynae and after a diagnostic lap found out I had rectal endo, as well as in the POD, and my bowel was tethered twice too. Push for a full and proper diagnosis hon, once I started getting this it kept happening until they finally put me on ad back therapy (zoladex & livial).

LauraB_04 profile image
LauraB_04 in reply toBumblebeth

Thanks for replying :-)

Help! Did you get treated in BSGE Centre?

I've had 3 laps + currently just awaiting my referral to BSGE centre to go through. I had endo in PoD, Uterosacral Ligaments and "Pocketing suggestive of Endo on the left side of rectum and right side wall," so my Gynae which dealt with my most recent op feels gastroenterologist team at the BSGE centre should be involved!

I had a 3-month course of Zoladex before my last op - it didn't really seem to help and made me the biggest beast out...!!

Bumblebeth profile image
Bumblebeth in reply toLauraB_04

No, this was done at Macclesfield hospital & Ive been on add back for 12 months now but my bowels still ache so Im being refered to Chris Mann at Birmingham who is BSGE and was trained under Redvine one of the best lap surgeons. Are you on FB? Theres an informative endo group called endorevisted - log on and read their files. Its helped me loads.

LauraB_04 profile image
LauraB_04 in reply toBumblebeth

Wow OK... really hope he can help you then :-) I have got my BSGE appointment come through now! Hopefully will start making progress!

Unfortunately not on FB, but thanks all the same x

happyseal profile image
happyseal

Hi Laura...

Hope you are feeling better. In my case I usually have the stabbing pains, but I do have cysts, so that is where the pain come from. Because of that sometimes I'm afraid of them bursting which must be a horrible pain. According to different things I read, usually, cysts burst and disapear by themselves, or you might need surgery. Some other sources/ladies said after bursting they just gave them pain killers and nothing else. So I'm not sure what is the procedure in case they burst. But as far as I know stabbing pains in the ovaries areas might be cysts. Other stabbing pains sometimes are because I'm really bloated and it hurts a lot... more than just cramps.

LauraB_04 profile image
LauraB_04 in reply tohappyseal

Hi!

I am feeling a lot better than I was yesterday thank you! x

Sorry you suffer with it too! I've never had cysts it seems - would it be possible to have one without knowing (I've not had any scans for months!) and it burst?

Thanks x

Shelly92 profile image
Shelly92

@Laura64

I had something like that My daughter and I called it the tire pain. It lasted less than ten min and would occur at any time during a cycle.

Felt like a boa snake was in there squeezing me to death .

What I believe now it was probably endo or adhesions stretching away from something it was attached to . Or maybe ovulation cyst bursting .

It sure was something

LauraB_04 profile image
LauraB_04 in reply toShelly92

Hi Shelly!

That's a good description! Unfortunately it lasted more like 4 hours when I experienced it on Saturday :-(

I've just chased up my referral to BSGE this morning, but the GP Secretary hasn't heard back from my GP (the surgery has all changed, so I've lost my lovely old GP who understood and knew me really well :'( )!! I get married in 2 weeks, so was hoping the referral could have had a head-start!! grrr!

Shelly92 profile image
Shelly92 in reply toLauraB_04

My daughter had hers lasting a few hours too

missymo profile image
missymo

Are you constipated at all?? I get it if i.m constipated but now been diagnosed with i b s.x

LauraB_04 profile image
LauraB_04 in reply tomissymo

I'm not at the moment, but it does come and go... Looking back at my notes it seems as though the rectum wall perhaps had some involvement, but this wasn't touched... Bring on the BSGE :-/

Does IBS medication work for you?

missymo profile image
missymo

Laura-B sometimes ut works!! Its triak & error i.m afraid!! Cant have cream cakes.coffee or chocolate or god help me if i did!! Pastry is a disaster too with me!!.x sometimes colofac works 20 minutes before a meal.but like i say its what i eat mainly!! All i know is its awful!! As you well know!.xx

LauraB_04 profile image
LauraB_04 in reply tomissymo

I know what you mean..! One of the first times I went to my GP I was given tablets for IBS, but unsurprisingly they did nothing to help.. I don't think it's particularly triggered by food, as I'd had hardly anything to eat when the pain came on :-|

What is colofac?

missymo profile image
missymo in reply toLauraB_04

Colofac is a tablet you take 30 before you eat.its supposed to regulate the bowel & stop stomache cramps.xsometimes wprks..sometimes it doesnt..sadly.x

missymo profile image
missymo

LauraB. Hunger can give you cramping& pain.i eat little & often.can.t eat big meals anymore.x

Shelly92 profile image
Shelly92

Mind always came out of the blue any day of cycle just came

Shelly92 profile image
Shelly92

Those are the pains my daughter and named tire pain

Like a vise pulling tighter and tighter from back to front

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