u/LittleFrenchKiwi

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Let me preface by saying if I'm not allowed to ask this then I'll delete the post.

If I can give some background info....

For the last 7 months I have been having pelvic pain that has slowly got worse.

The pain is low...like period pain location. And feels like really bad period cramps. Like the constant contraction of the muscles. Occasionally the pain shoots up like being stabbed with a knife. I'm guessing with a muscle spasm. The pain also can radiate up to my hip bone. Over the top, around my side and finish where kidney pain is. This is not at the spine but to the side of it. If anyone has ever had kidney pain they will know the location.

(This isn't all my symptoms but just relevant to this post I think )

All this pain started off small. Didn't need any pain meds. Then I needed paracetamol. Then I need 1 codiene. Then it was the max dose. Then it was morphine. Now it's a reasonable amount of morphine just so I can live. I take a much higher dose at work because I used to be in agony. Constantly in tears.

If I stand. The pain is better. Not gone. But better.

If I sit. It gets worse.

If I bend forward it squat down. I want to cry it gets very painful.

If I lay down in bed. It doesn't make much difference. It doesn't help

Some symptoms match Endo. But others don't or are inconclusive. The same with pelvic congestion syndrome. Some symptoms match but others don't and others are inconclusive.

So I've been flip flopping for months if this is pelvic congestion syndrome or endometriosis.

I hope to finally have an answer if it's Endo in about 2 weeks.

But today. I write this at 3 am. Because holy shit I'm in so much pain. I'm wondering if this pain I'm about to explain can help me figure out what is wrong with me. Like if only one community will say 'yeah we get that' and the other community is silent.

So I'm asking the Endo community and the pelvic congestion syndrome community., does your pain get worse at night with sleeping positions? Like you wake up wanting to cry. The pain is so intense but only on the side you are sleeping on or if on your back... Everywhere. Is this at all matching any one else? I'm just really trying to figure out which of these problems I might have. I'm wondering if this sleep thing might be able to help.

I'll try and expand. If I lay on my back ... Within about 20 seconds the pain in the pelvic on both sides intensifies to horrific levels.

If I lay on my right hand side. The pain is intense but I might be able to sleep for an hour or 2 before it wakes me up it's so intense. But on that right hand side only. The same if on the left hand side

If I sleep on my front. (I don't do this anymore !) I wake up and everywhere I say the pain can be is firing at 10 outta 10 pain and I can't move. I feel like I can't breathe it's so painful. So now I don't sleep on my front.

Right now..... I was asleep on my side. Woke up and the pain on that side ... In the pelvis. To the hip. Up and over the hip and around the side to the kidney location on the back is intense. Like ....... Almost a burning sensation. I managed to roll over but slowly and with difficulty catching my breath because it literally takes my breath away. Now I'm on my back and the pain has lessened on that side to a dull but still painful ache. Like it normally feels.

This is also after taking night time morphine that usually kills the pain enough that I can sleep. This runs for 12 hours. And runs out at 8am so I am still solidly under it's 'pain helping abilities'

I'll be cross posting (if it's allowed) or posting this in both communities. But please..... If you suffer from either of these conditions. Does any of this night time pain seem similar with you ? How it gets worse in different positions and then in specific places according to the position you are in.

Thank you in advance. I will read and reply to everyone but I do need to get up and go to work in a few hours so I'll reply on my lunch break.

Edit : I will clarify I'm not after a diagnosis. The last time I saw my doctor he basically just shrugged when I asked what's next and just said I'll refer you to a pain management person to handle this long term pain. Like..... In my mind.... You need to find out what is causing the pain and try and fix it. Not just be like 'we couldn't find anything so just go to a pain management person for the rest of your life' so I guess if this Endo test is negative. I can ask for the test to confirm pelvic congestion syndrome. If that's negative too .... Then I dunno. But I can't live like this the rest of my life. I need a pretty moderate dose of morphine daily to just live. If they stop that I dunno.........borrow my neighbours gun haha. Half jokes.

Edit : thank you everyone who replied. You gave me some really good points of view to think about

I would like to offer 2 apologies. The first being I had just been looking at other posts discussing the recover and there were a lot of horror stories on there.

I then made this post whilst I was admittedly having a complete panic attack. Which is probably why it reads like I'm a nutter.

The second being about the analogy of stab wounds. I admit not my best analogy. I meant like..... The implements they use going through all the layers of skin and muscle and then they are 'inside' you. I thought they are quite large so used the analogy of stabbed. It was the only way I could think to explain it in my panic induced ramblings. But I admit I could have explained it better if I had actually waiting before posting this instead of posting whilst not being able to breathe.

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I mean ...... You basically get stabbed multiple times...... And it goes through all the tissue layers. Not like superficial.

Either they remove stuff like a cyst or an ovary or basically use a cheese grater on your insides to scrap and remove all the endo shite attached to you.

Then you get given a few paracetamol and get told to go home after waking up like 2 hours before.

Like..... Wtf ?!

Why aren't you kept in at least overnight ?!

You've basically just had the same as multiple stab wounds?! Do those people get sent home 2 hours after they wake up ?!

Do they only get a paracetamol?!

I'm pretty sure they have to stay in a few days and get things like morphine drips.

So why don't women after a lap ?!

They potentially remove organs like a cyst and maybe the ovary if it's damaged .... Then of course scrap the Endo out .....

And what .... Wake up and send you home?!

Like ...... Fucking what ?!

Why aren't they kept in at least overnight for observation?! Why arnt they given decent pain killers ?!

Why are they told they can return to work after maybe 3 days ?!

Someone who gets stabbed multiple times in the stomach ain't just going to get told to go back to work after 3 days surely ?!