Endometriosis pain: when does it strike?

Hello everyone. I have been given a provisional diagnosis of endometriosis and am awaiting a laparoscopy; it's scheduled for the second week of January. However, my gynaecologist said something that made me think and I wondered if anyone could shed some light on the matter...

I obviously have very painful periods, they're very heavy and unpleasant and therefore fit the most basic symptom list for endometriosis. But in addition to that, I also have presented signs and symptoms of progesterone intolerance, I have severe PMS and don't tolerate synthetic hormone treatments very well... When the pain is bad I find my bowels are very loose and frequent (sorry ladies). But most importantly (to me) I have quite a lot of period type pains throughout my cycle. Ovulation is particularly painful and from that point until my period starts I experience quite strong pains. When I told my gynaecologist this he said: " Well that's not endometriosis. You only get pain when you're actually bleeding."

Is this the case? From what I've read in my research that isn't true but I would be interested to hear what actual experiences other ladies have as to when exactly the pain strikes.

17 Replies

  • Can I ask how long you waited for your laposcpy? I was referred for mine last week im really scared xxx

  • I personally have been putting off a laparoscopy because I'm really scared. I've been being treated for endo without a firm diagnosis and although the hormone interventions work on the physical symptoms, psychologically they make me a bit poorly with anxiety and depression, so I've come off the medication and now the pain is back! To be honest everything I've had to do with the suspected endometriosis has been really fast but I think that's because I was initially referred from my NHS GP to a private hospital clinic as an emergency case so they seem to take me quite seriously. Luckily! Good luck with yours. I hope it goes well :) xxx

  • My symptoms sound very similar to yours! A had pelvic pain all the time which sometimes grew worse. I don't have periods as I'm on the injection but when I did there was a lot of clotting and always accompanied with diarrhoea!

    I experienced shooting pains up my bum! Worse with ovulation and by the time I came to have my lap I could no longer have sex as it was too painful!

    Although an operation is scary it was definitely worth it for me and wasn't as bad as I was expecting! X

  • That does sound all sound very similar to my experiences. The pain during sex is only a recent development and certain 'positions' seem to be worse for that. Sorry for too much information!

  • I don't believe in too much information! When I sae my consultant that's one of the questions he asked me. Didn't make much of a difference to me but make sure you explain it to your doctor I think it tells them quite a lot x

  • I agree cupcaje

  • Sex was always painful never pleasurable didn't know for years wasn't suposed to be like that

  • Hmm..I think if you had adhesions they would hurt all the time as they are sticking your organs together ALL THE TIME. It might be worse during period though.

    I'm waiting for official diagnosis from lap later this month. I've always had cramps in week before and during period. Then started having stabbing/shooting pains during those times. I went to gp as I started having burning pains during ovulation. Most recently I've developed kidney pain. This all in the space of roughly a year.

    The thing is many docs might say young ppl don't get endo/endo only hurts during periods etc..but you know your body and even if it's normal for someone else doesn't mean it's normal for you.

    My periods went from 1 week on every month to two weeks on every two weeks. Some people may have always had periods that long but the change is something to watch out for.

    I think him saying you only get pain when you bleed is bollocks. Especially if you have recto/vaginal endo it could hurt every time you have a bowel movement! You know your body - if it doesn't feel right don't let them fob you off.

    Hugs xx

  • To be honest this sounds very like what I have - stopping my periods stopped all the pain at any time. My appendix was stuck to my abdominal wall and I'm not sure how that wouldn't hurt all the time!!

  • with endo you can have pain all through your cycle due to adhesions. i get pain when i ovulate, like a period cramp just not as bad.

    yes sex could be painful for me, mainly coz i had a 10cm cyst! certain positions where worse than others.

    all better since i have my surgery :) good luck

  • Thank you so much to everyone who's replied! I really appreciate it :) Today is a bad day for pain. It's the week before my period and it's like a deep twisting ache. It makes me feel sick it hurts so much... And despite all the symptoms indicating it is endo, I'm scared in case the gynaecologist does the laparoscopy and finds nothing. What then? I don't want someone to say this is all in my head. It really isn't. It really flipping hurts. Aghhh!

  • They will find out what it is even if not endo

  • I'm in the same boat eww_notts, my lap is on Tuesday, I'm in constant, severe pain and have been for 5 wks. I'm scared of finding endo, but scared if they find nothing too. Anyone with advice out there? If not endo, then what??

  • More tests

  • Try not panic ladies, if it isn't endo they will usually have some kind of idea what it could be from digging around in there and then you go for more tests till you get your answer.

    If it is endo? Well yeah that sucks! But having a diagnosis is great and once you've got it you figure out your treatment plan and crack on! And everyone here is here to support. X

  • no way i cant belive they would actualy say that!

    ovualtion pain is one of the major pains and symtoms from endo if you google causes of ovualtion pain this will come up!

    my ovulatiion pain is actually worse than the period pain itself because my endo was all over my ovairers hence when you ovulated it flares up

    saying all that tho i had my lap 4 week s ago and still getting pains xx

  • That is not true. Endometriosis causes pain throughout the month and yours sounds similar to mine - my pain was worse during ovulation and at the end of a period (but pretty much throughout the whole month). These doctors really don't know what they are talking about.

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