Endometriosis UK
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Endo and periods- always linked?

I've never had any issues around my period or sex, yet I'm living in constant pain. A few GP's have now suggested endo which I'm awaiting an ultrasound for. Has anyone found their endometriosis pain to be totally separate from their periods?

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Yes. I have endo pain all the time now, completely a different set of pain then my period pain. I get pre-cramps, period cramps, then after cramps. Then go straight back to my normal endo pain. And fyi: the only true way to tell for endo is laparoscopic surgery where they can go in and look around. Chances are they won't see anything on your ultrasound.

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This is true of endo lesions, although a chocolate cyst or organs being pulled out of place will show up on an ultrasound, it's how I got diagnosed. If the ultrasound comes back clear I would suggest being referred for a laparoscopy.

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It is certainly possible, a lot of people get pain around ovulation time and if the endo has caused adhesions, which is my main problem, the pain they can cause remains when you don't have a period or even in menopause. It's good your GP is taking it seriously enough to investigate.

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The pain is pretty much constant, it gets worse early or mid-month I've noticed. I think the ultrasound is maybe to rule other things out before they go any further? I was unfortunate enough to come across the symptoms of ovarian cancer (on a nail varnish bottle believe it or not) and have now scared myself silly.

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I used to have pain and feel awful for 1-2 days only during periods. But then that seemed to get better and I had lots of weird symptoms that I thought might be IBS or something - these could happen at any time. Then I developed a pain in my foot, followed by a severe backache which was constant and lasted months. Turned out I had a 10cm cyst and a 3cm one on other side. This was diagnosed by MRI! I now have weird symptoms all the time but feel worse between my period and ovulation (usually). I also have cysts coming back and they do show up with ultrasound.

Good luck hope they find out what's wrong! I also freaked out about ovarian cancer after googling a test they indicated they were going to do on a letter to my GP. They should really explain these things and the risks.

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I'd never been aware of ovarian cancer to be honest. I recently bought a bottle of nail varnish as I liked the colour and it was a charity bottle, late last night after painting my nails and reading the leaflet that was with the bottle (as you do when you're waiting for your nails to dry), I started reading the common symptoms of it. One of them was trouble eating and getting full too quickly, as well as bowel trouble, which is something I've been complaining about for years. Not gonna lie, I've had these symptoms at a severe level for 2 years, moderate for over 5 years and mild since my periods first began at 11/12. I'm starting to think if it was anything overly serious/life threatening it'd have floored me by now. That's what I'm telling myself till I get some tests done at least!!

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I was the same so hopefully it is not that. I became aware of symptoms after reading a biography of Rosalind Franklin who died of ovarian cancer. Makes me more annoyed that when I mentioned being bloated all the time to a GP and asked if hormones could be a factor I was categorically told no. I really have no faith in most of my GPs. I was only referred anywhere as I sat in the office and told them to refer me to someone, anyone!

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They can only properly diagnose endo with a laparoscopy. It doesn't always show up on ultrasound. Even an MRI missed out a cyst riddled ovary on me that ruptured a week later! So if you want properly looked at for endo then you will need to push for the lap. In answer to your question,yes the vast majority of sufferers have pain every single day,not just around the time of their period or during/after sex. It is a daily battle 😟 x

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this is a main reasons why doctors think i might not have endo, however i have kept a pain diary and it shows no cyclical pattern to my periods. Im on the pill back to back so even when i get pain and don't bleed its never when i would be naturally having a period. The pain is bad when i do have a period, but its all over the place, so am waiting for a lsparoscopy. Endo can have many symptoms and its not textbook for everyone so a lap is the best way to go, hope you feel better soon x

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Sorry to hear what you are going through! My endo pain started 6 months ago, was getting this every day, wasn't linked to my periods. My dr said he was convinced I had endo, I had my laparoscopy done yesterday and they have found it! It seems ive got immediate relief from the pain I had before just uncomfortable from the op! It is definitely worth u having a laparoscopy done I wasn't convinced mine was endometriosis and even went to see a private urologist due to constantly needing to urinate. Good luck, they may not see anything on the scan they didn't with me.

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Thanks for all your replies guys. I was aware I'd need a laparoscopy done however I do think my GP is trying to rule other things out before we go that far! I hated seeing my local urologist she was horrible :(

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You can't always see endometriosis on an ultrasound. If they do a transvaginal scan (internal) they can see any mass/cyst or if you have adhesions - to check if the organs are free moving as they would be normally or if they are adhered to other organs. If you get referred to a gynocologist please make sure you ask to be referred to an Endometriosis specialist. Not a regular ob/gyn It's worth your time researching and travelling if needed. Looks for a BSGE Clinic.

Laparoscopy with pathology of tissue is the only true diognosis. In this situation you need to make clear you want the tissue CUT (Excised) not burnt/lasered/cauterised (ablated) from what I've read the only exception to the rule here is if you have Endo on ovaries or uretha.

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