Does anyone get cramp/pain even when they... - Endometriosis UK

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Does anyone get cramp/pain even when they aren't having a period?

missm87 profile image
9 Replies

I am un-diagnosed, still going through the motions and currently awaiting some blood tests as the Dr has decided to test me for gluten intolerance. However if you look at my other posts I don't think I have that.

Anyway I am on the combined pill (Gedarel) but I am having cramps even when I'm not on my period. Tonight my back is killing me with cramp. Sometimes when I have cramp in my tummy it is hard to tell the difference between IBS cramps and period cramps but when its in my back like this I know its period/womb related. However I did have sex last night and I'm not too sure if that would cause it.

I've always just suffered when I've been on my periods but the last few months I feel as if I'm suffering more between them as well with cramps and sharp pains everywhere. Does that mean if I have endo it could be getting worse?

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missm87
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HH811 profile image
HH811

Hey,

I have been diagnosed with endometriosis. When I was being diagnosed with it/going through the motions by the sounds of it I had the exact same symptoms as you are describing and my pains seemed to get progressively worse.

Before my laparoscopy I was told to loop the pill for sixth months at a time so as to stop my periods as I was having such bad ones- but like you I still continued to get period pains when I wasn't on. After the laparoscopy I was hoping this would have stopped but about 4 months later it was still the case so I went to see my gyno. He basically said that everyone reacts differently to taking the pill back to back and you've got to find the correct amount of time to do it for so he advised me to cut it down to having a period every three months. When I first had a period after sixth months it was AGONY but since doing it every three I've found it much better and I haven't had pains that feel like period pains since doing that.. So not sure if you're taking the pill back to back because it could be that and as my gyno described it just the fact your womb 'wants a period' type thing haha.

If you're not and your pains continue to get worse and nothing seems to help then for me it just sped up the process of getting a laparoscopy to FINALLY get a diagnosis. So that's the one bright side haha!

Hope this helps x

Amber83 profile image
Amber83

Hi ya,

I have period type cramps all month, it gets worse the week I'm due on. The cramping and heaviness feels like I'm about to have a period but it's pretty much constant.

Sorry to hear your pains are getting worse. In general they say that the amount of pain is no sign of the severity of the endometriosis. You can have a tiny amount of endo and lots of pain and/or lots of endo and no pain.

I have deep endometriosis which has joined my bowel and womb together and endometriotic nodules. My pain started as bad period pains once a month and slowly got worse and worse till I ended up as I am now (bad pain everyday). Make sure if you ever get a laparascopy that it's by a specialist at an endometriosis centre, it's a long road to get there but worth it for proper diagnosis and treatment. Good luck xxxxx

Nicolahunny profile image
Nicolahunny

I get pelvic pain to lower left side of my stomach I was dignosed with having endo in my womb and my pouch of Douglas had attached itself to my womb with aheadions I think to my knowledge you symptoms sound like endometriosis I always get pain week leading up to my period and whole week off my period and during ovulation to I think the only way for certain to dignose endometriosis is for gynaecology or your doctor to refer you for a laprostopy as gynaecology refered me for one January last year xx

janeingirona profile image
janeingirona

This sounds just like me. I have adenomyosis, seen on MRI. No endo seen at lap but the surgeons didn't look in the pouch of Douglas.

beauty14 profile image
beauty14 in reply to janeingirona

So what is the solution for you they discovered I have adenomyosis by Mri I haven't stopped bleeding and my iron is 5 I am confused

janeingirona profile image
janeingirona in reply to beauty14

I have the Mirena a coil, which is helping to stop massive flooding and clotting but the pain is still there all the time!

Only other option is hysterectomy.

I have period like pain 24/7, with occasional severe stabbing pains that can last for hours at a time...

CP17 profile image
CP17

Yes, I sometimes have period-like cramps even when not having a period.

missm87 profile image
missm87

Thanks everyone. Hopefully will get further forward this week once I get my blood results back to see if i'm intolerant to gluten. However this week is also my period week :( I was going to take my pill back to back but im in agony anyway with cramps so I don't think it matters too much. i also feel like I need a period, that sounds really weird.

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