Pain outside of ovulation and period - Endometriosis UK

Endometriosis UK

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Pain outside of ovulation and period

Totoro123 profile image

Hi all,

Just wanted to check if other people also experience pain outside of their period and time of ovulation? I can have months where I’m not in pain on my period but in the days before and after and then times where I just don’t have pain around period time at all. I can be in pain on random days throughout the month, eg been experiencing daily pain for the last week but not ovulating or due.

Just trying to unpick whether this is indeed endo or could be something else entirely!

Thanks all :-)

16 Replies
Dee_EndoUK profile image
Dee_EndoUKModerator

Hi Toto123

If you suspect the pain you're experiencing might be endo, then it would be well worth downloading our pain and symptom diary. This will help you to keep track of all the symptoms you are experiencing, which will help build up a fuller picture of your concerns and help you when visiting a GP.

You can find the link if you scroll down on the following page: endometriosis-uk.org/news/i...

Hope it helps!

Have you been checked for fibroids? Xx

Totoro123 profile image
Totoro123 in reply to Vps1980

Thanks for responding. I’ve had a few ultrasounds which were all clear x

Did you have an internal ultrasound? Xx

Totoro123 profile image
Totoro123 in reply to Vps1980

I’ve had an internal ultrasound about a year or so ago which was fine but I wasn’t having these symptoms back then. Do you think this is something I should ask for? Thanks xx

Vps1980 profile image
Vps1980 in reply to Totoro123

It can’t do any harm lovely, I have pain at strange times, and that is how my fibroids were diagnosed xx

I've had long spells of having pain all through the month or at random times as well. Hope this helps. I've got diagnosed severe endometriosis. xx

I have pain outside of ovulation - in fact, I don't ovulate at all and still have pain! It's horrible, but hopefully there's some comfort in knowing you aren't alone!

5M9H profile image
5M9H in reply to EndoSuckss

Exactly the same as me!! I thought I was abnormal to not have periods but still have pain!! Do you also have nauseas days even though you don't have a period?

EndoSuckss profile image
EndoSuckss in reply to 5M9H

Yes!! I do - it's so odd! The nausea is awful and, like you say, it's for a whole day! So odd!

5M9H profile image
5M9H in reply to EndoSuckss

It really is just so frustrating!! Surely can’t be normal!

Yep, one month can be bad , the next excruciating then the next manageable. Mine is all so random. Random pains throughout the month , shooting pains in my arse🙄, pains in legs etc . It’s like a non stop Russian roulette

I had a laparoscopy at the end of September and now 6-7 weeks the other side I now realise the amount of pain I was actually in... When I came off the pill 4 years ago I was able to distinguish all the different phases of my menstrual cycle based on twinges and types of pain. By the end of September 2021 they had all blurred together into a cacophony of pain and misery - various IBS type symptoms, pain in the area of my kidneys and lower left abdomen/pelvic region, tight pelvic floor, lower back and tail bone. Right before my lap I felt like my left ovary might explode. But just like you, I sometimes felt like my pain was really inconsistent and I think that played into why it took so long to get a diagnosis. I was only considered for a laparoscopy because I was having trouble conceiving - insert expletives here around only being taken seriously as a potential baby making machine and not as a human being in near constant pain...

Interestingly though, no endo was found on my ovaries, fallopian tubes, kidneys or bowel. It was on my uterosacral ligaments (which would explain the lower back/tail bone pain) and in the pouch of douglas (which might explain some of the bowel related pain). So, I'm beginning to think that anxiety played a fairly big part in my pain, in that I became hyper aware of it and at the time, because I didn't really understand what was causing it, my mind worked overtime on what it could possibly be. That's not to say anyone here is imagining their pain - I once got really angry with a doctor in A&E (ended up there once with the left sided agony) who told me it was likely to be 'in my head' or 'mechanical pain' and to get some buscopan and a bottle of wine on the way home... but anxiety can also add to existing pain an make it a lot worse and I think that perhaps it did influence my pain levels pre-lap - fear of the unknown, fear of needing surgery for a diagnosis, fear that they would find nothing and I'd be a confirmed malingerer!

I think Dee_EndoUK is right to suggest keeping a pain an symptom diary as you might be able to identify 1 or 2 things that happen in a regular pattern. For me it was excruciating ovulation pain that lasted for days. My periods were neither heavy, nor consistently mega painful (though they were usually painful in some way with the odd mega one). Sex had also become painful - though I really only came to realise quite how bad that was until post-lap (I had a GP 'normalise' that pain for me by telling me sex was generally 'rough' on the body... I mean...!!)

Good luck, I hope you get some answers soon.

Totoro123 profile image
Totoro123 in reply to Kat234

Thank you so much for taking the time to respond. Everything you have described has really resonated with me. I’m sorry you had to go through all of that and it’s awful how much health professionals minimised your issues. I have found it scary how long I’ve had to wait for answers. Every time I feel pain (now daily) I become more anxious and miserable because I haven’t yet had a diagnosis and it becomes a vicious cycle. I am seeing the gynae on Wednesday and am going to insist on further investigations. Again, I’m so grateful for your response and I hope you are feeling better post laparoscopy. Take care x

I have pain pretty much constantly. It varies a lot as to the severity and location though!

hi lovelies. yes i have pain random days of the month to the point were i feel like i am going to be sick all day some days. . It is very random and bizarre, I feel like it takes over my life. Am truly sorry your suffering i hope you can get something to ease it. unfortunately not much helps me with the pain. i use a hot water bottle. i hope you manage to ease it hon. were all here with you. 😘😘

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