Intermittent / Irregular Pains... Is this normal?

[Pheebeh]

Hey all,

Sorry I'm new here hence my barrage of posts! I have been reading through so many and it's already helped but I just wanted to ask people what kind of pains they get with their endometriosis and to see if anyone gets similar to myself.

I was diagnosed a couple of months ago as potentially having Endo and I am awaiting a laparoscopy at the end of the year.

I'm really nervous about it as I am weirdly worried I don't have it (then I won't know what on earth is wrong with me) and also worried if I do have it! But what's bothering me the most is that my pains aren't constant. They're intermittent and sudden. Rarely does severe pain last an entire day, although with my back pain I can have a weakness sensation there after a collapse for the rest of the day and it can reoccur frequently during the day. Just not constant pain if that makes sense?

I figured if I'm bleeding, surely I should be in pain 24/7? I may be wrong, I have no idea about it but was hoping someone might be able to identify with me and my pains and reassure me that I'm not going insane.

My pains / suffering is as follows:

Lower back and left butt cheek collapse / shooting pain.

I can be standing one minute and suddenly my back will "give way" and I collapse, with it almost cramping and I physically cannot hold my weight on my left leg (have to hold myself up with my arms). It isn't constant but when it happens it can wreck my back for the duration of my period and cause me to have knots in my butt cheek thereafter.

Heavy Clotting.

Sorry for TMI but my periods can seem semi normal but then I churn out a gigantic clot. You're talking slug size. It's really unpleasant (normally correlates with back cramping)

Irregular Periods.

Granted I now have the implant which plays havoc with periods supposedly but before then I would still bleed for a day, nothing for a week then bleed for two weeks, then nothing for 2 months, then bleed for a week. The longest I had was 25 days. It exhausted me beyond the end of the earth.

Weird Breathing Sensation.

Normally a few days before my period I get the sensation that I am not getting a big enough breath in. It's like an interrupted yawn... I know I'm getting enough oxygen I just feel my lungs need to expand that little bit more when taking a breath in. I now know I'm due to come on my period when this happens... it's like a prolonged panic attack-breathing sensation (without the panic... although after 48 hours of feeling like I'm not breathing properly I can start to get nervous and frustrated / upset).

Shooting Anus Pain.

Seriously. What the bloody monkeys is that about. There's no particular pattern other than during or just before my period but god it makes me leap and tense. I can feel during my period my bottom is... pressurised. But the shooting pain is intermittent.

Uncomfortable Pooping.

I say uncomfortable as years ago I had an anal fissure. Pooping then was agony (I was in tears and would pass out... really not pleasant). But during my period or just before my period, when I go for a poop it's not comfortable. I get this pressure sensation around my bottom but don't really need to go to the toilet too. Feels like someone is cramming their thumb just into the side of my butt cleft.

Exhaustion / Lethargy.

I just struggle to operate. My head feels crammed full of fluffy toys and I just want to sleep so much. I have such little energy.

I think those are the main ones. I do get an achey shoulder blade which I didn't realise could be related although I am rather clumsy so it wouldn't surprise me if it's just a standard injury. Nipple and soooore boobs too but I think that's kind of normal periodness.

Are these endometriosis symptoms like anyone else has had or is having? It does scare me I'm wasting doctors times but my body just feels battered and I need to know one way or another!

It's more the fact I am not in 24/7 constant pain I'm doubting my diagnosis. Even if when I am it's severe. I managed, for example, a rather pathetic jog the other day when I came on my period. Granted, leading up my dogs at the end of it caused me to collapse and I had to stay seated for a few minutes before I could get myself back up and to the car but I still pushed through it.

Am I just having a really crappy period? I keep wondering if perhaps it's something to do with my core strength or sciatica nerve. I sit worrying about it so much.

I'm tired, I'm a bit scared (even if I don't admit it out aloud to anyone!) and I'm just hopeful it can be resolved, even just a little bit for a little while.

Any help would be so grateful. I feel awful for anyone who is suffering, what I suffer is pretty horrifying to me let alone what I've read others are suffering.

[cmbxm]

Have you asked to be referred to a gynaecologist? You aren't wasting your doctors time because that isn't right, and never think your problems aren't valid because some people are suffering a lot worse than you, endo comes in many stages/grades so you could have it at grade 1 because even the littlest bit of tissue can cause pain, i do suggest you see a gynaecologist though, hope you get some answers soon my lovely x

[Pheebeh in reply to cmbxm]

Hey there!

Thanks for your reply! Yes I have seen a consultant gynae who has said he's sure I've got endometriosis and I've been referred to have a laparoscopy... but I'm still nervous that nothing's going to be there and it is all caused from something else.

Just so paranoid! Especially when symptoms vary so much, this pain is also normal for me, I've had it for over 10 years so it's all a bit confusing to hear it's not normal!

[Fabbird]

Hi, your pain pattern sounds very similar to my mine. It comes and goes, often not during my period but before or after. I get back pain and jelly legs too. The pain up the anus and having a poo is also very familiar. I believe that is generally a sign that you have RV endo. I certainly have a patch on my rectum which accounts for it.

Hopefully your lap will clarify all this. I found it really useful to get a copy of the report. I can now say to my pain, ah that's the one from the *patch and strangely I feel better. I think it's about feeling more in control and able to dismiss the pain (which otherwise is so alarming).

[Pheebeh in reply to Fabbird]

Exactly, I just want to know so I can have some kind of control. Right now I feel useless!

[JOI90]

Hey Pheebe. Im so happy im not alone. I get the same pains and. No help. Doc said i shouldn't be in sooo much pain smh. I get back pain and i feel like im breathing through a paper bag! Pain alllll the time like pressure and stabbing in mt rectum at times i cant even sit down. Always tired evwn if i sleep 4 ling hours

[Pheebeh in reply to JOI90]

Aww I'm so sorry I wouldn't wish this on anyone!

Yeh, I'm exhausted after my third week of bleeding now although today I think it's finishing. Thank god. Although still stabby bum pain this morning.

Managed half a run / jog / stumble two days ago and some weights yesterday. I was told exercise can help. It's a fight to do it and not collapse, and that's if I can make it out the door in the first place. Trying so hard to do this yet staying awake during the day or focussed is difficult enough :/

Hoping today it goes and stays away for a couple of months, I need a breather and have so much physical work I need to do :/

[Emiilykatex]

I feel so similar! I get these pains intermittently, it makes me feel crazy and question the legitimacy of my own feelings. I started getting these awful cramps/pains about 9 months ago but they were pretty few and far between that I just put it down to a bad period or a bad stomach as a scan came back with the all clear. A few months later I started wearing heat pads as they became more frequent, cut to two months ago it was nearly everyday and it was in more places than just my lower abdomen. That's when I thought I better give in that something WAS wrong and went to the doctor again. Right now I have pain and pressure in my abdomen all day everyday, but also intermittently I get mild to severe pains in the top of my legs, my back, my side, my rectum and even feels like my vagina sometimes!! Pretty damn confusing! I'm currently not at work as I with children with pretty severe behavioural difficulties and I'm basically a liability at work. It's hard to stop a kid from smashing something/someone when you are doubled over in pain!

Awaiting a lap for some answers, in the mean time I'm just trying to not feel weak and like a burden.

Sometimes I think we put up with these pains because the intermittency of them makes us question ourselves. But it shouldn't be something you put up with AT ALL. I hope you find some answers and find a treatment that works for you.

All the love x

[Pheebeh in reply to Emiilykatex]

Aw that sounds so similar!! I hope work are being good to you, I used to work in a behavioural class at a school, challenging job yet so rewarding. Requires so much energy and patience, I remember my periods and trying to work was horrendous especially as the kids all knew me as bubbly, full of energy and smiley.. to transform to quiet, difficulty moving and shattered was not good. But I didn't know then I could have endometriosis, just thought I was normal and possibly just a bit pathetic for not coping as well as others!

I now am self employed which is good in the respect of I can curl up and do nothing without feeling guilt ridden buuuut the problem is... if I don't work... I don't get paid! Ugh.

Fingers crossed all solved for you soon!

Thanks for your reply x