Do you get pain when. No period? I haven'... - Endometriosis UK

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Do you get pain when. No period? I haven't had a proper period in months but still get really bad pains, to point I'm in Hospital,

lmm_85 profile image
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I got Admitted yesterday, they have ruled out a Cysit so they now want to do a Laporscope to check if I do have endometres, the pain gets so bad they have given me Morphine, also a lot of the pain is mainly on my right side, some times it goes down my leg. In to my bum, I also bleed from my bum, some months I spot. Some months I have a day period but it's the color as if I've come to end of my period. It's quite painful when having sex, it's a deep pain

Sorry for going on and on, just looking for Advice really, as I've noticed a lot of people get pain while having there Period. But I've only had it once wen I've had period due to fact my period is always messed up!

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Sian83 profile image
Sian83

Yes it's normal. I get pain constantly and like you it spreads down into my hips and legs, and also up into my chest. During my first gyne appointment the specialist told me I probably didn't have endo because I would only get pain during my period. Very wrong!! I bled everyday for 18 months in the form of brown discharge, and am currently waiting for a camera in my bum to see why I bleed there too. So you have normal endo symptoms I wouldn't worry too much about it being anything else on top. I hope they can help you in hospital and good luck x

jolie-c profile image
jolie-c

i have exactly the same symptopms was diagnosed with endo 5 years ago now. like u i got to the point i was in hospital morphine on tap and drs up in arms at what to do with me! after three ops and a ovary out i still suffer with bad cramps and anal bleeding due to endo spreding. embaressing bleeding was the worst not knowing or having regular period then a tidal wave happens not good... pelvic mri scans are the best way to find out how far endo has spred, with out need for op or so my drs now tell me (after my ops i now have a tummy that looks like a frankensiten experiment) it can be confusing and a very emotional time with all the different things drs tell you. My best advice to you is to try keep calm and relaxed getting anxious and worked up dont help! Endo is caused by hormonal inbalance so if u get worked up it duz too unfortunatly:( i got soo wound up about it when i first got diagnosed i gave myself panic attacks to the point id pass out. drs advised me to try the depo pro vera injection as it stops period related bleeding,worked perfect when i was single no worries even reduced the pain to a point etc, but im now regretting being on it as i want to start a family with my new hubby and its messed me up big time. hope this helps n u get sorted soon...

lmm_85 profile image
lmm_85

Hello

Thank you for replying, Hos let me go Home even tho I was or am still in pain and not been able to keep anything down, I'm scared that if I have the op and they don't find anything, then they will think I'm crazy and not really in any pain when I'm in a lot of pain!

Barders profile image
Barders

I expect they will find endo. I was worried in exactly the same way. I only have 2-day periods and not heavy, but before my lap I was in pain 24-7 and it didn't seem to get worse at any particular point in my cycle. I went into a&e twice and once they offered to admit me for pain relief with morphine etc. I also had terrible pain during sex. They were concerned it may be cancer because the pain didn't seem to follow any particular pattern. Anyway, it turned out to be endometriosis - and the surgery did really help with the pain, though I still have other symptoms. I wish you the very best - hang in there!

lmm_85 profile image
lmm_85

I'm at Hospital on Friday for a scan I should of seen the surgeons on 3rd may but they cancelled till 2nd Aug so going to see if I can get a sooner app. I'm in a lot of pain tonight, tried taking Tramadol but it Jus makes me sick, so taking Cocodmal but it just numbs the pain for abit. My friend thinks I'm just making up all the pain as I'm not on my Period and she said she read that u only get pain when u have a period. So I'm now thinking is it really just In my head and I'm I just making it all up! So much for a caring friend. She can she how much its ruling my life. I'm so behind in college and work and my husband and kids are affected by me spending so much time in and out of Hospital! My husband can't take anymore time off work as he took so much already due to all the Times I've spent in Hospital due to the pain, I've also. Noticed today its quite sore on my left side aswel, is that quite normal? I don't knowwhat tto think anymore!! Thanks for reading!

Barders profile image
Barders

It's definitely not in your head. I felt that way too and agonised over it, and it turned out it wasn't in my head at all. Trust yourself on this. I'm afraid your friend is wrong. This condition is so different in different people - and there are lots and lots of sites and articles that say you can have 24-7 pain with endometriosis (I read somewhere that about 20% of endo sufferers have pain all the time). The pain can be very, very bad too, even with small amounts of endo. It's a strange condition. Why don't you pull together some articles about it to show to anyone who doesn't seem to understand? I found this helped in some cases. For starters, read these. This will help you feel like you're not going mad!

rcog.org.uk/files/rcog-corp... - this was recommended to me by Guy's hospital

nhs.uk/Conditions/Endometri... - NHS site -states you can have pain all the time

shetrust.org.uk/wp-content/... - this is the info from one of the two main endo charities in the UK (recommended by NHS) - this gives lots of detailed info and is hugely helpful.

I had pain on my left and right ride, pelvis, back and legs. Nothing showed up on the scan so be prepared for that as it may be the case for you too. (I also had to wait a long time and was trying desperately to get cancellations!) You'd need to have a laparoscopy to diagnose endo for sure. In the mean time you'll have to be patient with yourself and try to accept that you might have to miss out on work/college for a bit. I know it's stressful but your health is most important.

There is hope though. Finding the right painkiller can help a lot. Tramadol has the same effect on me as you so I only take it if the pain is hideous. You could try Amytripaline? (Sp?) This seems to work for a lot of people. Go back to your Dr and ask to try other options. And if your Doc isn't helpful, change to another one.

Don't give up. And whatever you do don't feel guilty! It isn't your fault you feel so awful - you deserve support and care while you're going through this horrible time. Take care of yourself.

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