Endo with no period

[Katiahead]

I take the contraceptive pill and have no periods but every month a few weeks before what would be my period week, I get very emotional, pain in my ovaries (I have endo cysts), my panic attacks kick in and I can't sleep properly. This goes on for about a week or a bit more. Does anyone else who has no periods get these symptoms? I see so much about pain people have during periods but not much about those who like me don't have them. I started taking the pill after a 21 day period which led to me getting anaemia and after 15 years I had just had enough of the bleeding and pain. Thanks 😊

[Pickle729]

I don’t have periods atm (we don’t know why) but I still get all the symptoms I had when I was having them, the only difference is I don’t have the horrific bleeding and cramping that I usually get with periods. I’ve got adenomyosis as well which is why I got such severe bleeding and cramping, but my actual endometriosis pain is worse at other points of the month.

You don’t need to have periods and ovulation to feel the symptoms of endo or even have the disease to begin with, it’s a common myth that endo starts when periods begin. But that’s if you follow the very outdated and debunked ‘Sampson's theory’ myth as the cause of the disease. Endo has actually been found to be as prevalent in foetuses as it has adult females, 10% (foetus which were miscarried/still birth or aborted). So periods aren’t the cause of the disease which explains why so many have symptoms despite no periods.

[Katiahead in reply to Pickle729]

Thank you 😊

[IB15]

hi,

Yes i get this! Do you mind if I ask which pill you are taking? On some pills you can still ovulate even with no period which could be causing you some of the issues?

I take desogestrel (which halts everything) but i do still experience pms symptoms (swelling, mood swings, wtc!) i do also still have a low level of pain where my endo is. Sometimes if you have a virus/ cold/ bug your pill does not absorb properly which can mean you have a bit of a flare of symptoms also! I get breakthrough bleeding often if I have been unwell.

Hope this helps xx

[Katiahead in reply to IB15]

I take rigevidon. I went through several and this one just seems to have the least side effects and has genuinely helped me with the bleeding which was excessive. I used to go through 3 sanitary towels an hour Meetings used to be horrific as I was so worried about bleeding. I had gall stones and my gall bladder removed last year after a 3 year wait and couldn't take the pill with my gall bladder in the condition it was. Its been a fun few years!

[IB15 in reply to Katiahead]

Bless you, that's not fun at all! Maybe worth having a chat with your GP about alternative options? Like the coil maybe? I have never tried it personally but it comes highly recommended by endo specialists! Hope you get the relief you need xx

[Misswah]

Having "period like" pains and symptoms outside of my period was the reason I went to my GP in the first place and what started the investigations into possible endometriosis. After my first appointment with a gynaecologist they put me on the combined pill continuously to stop my periods and improve my symptoms but my pain in non-cyclical so although I no longer have the horrific period pains I grew up with I still have pain most days even without bleeding. I've since been diagnosed with both endo and adenomyosis, and even though it doesn't stop my pain, contraception has helped improve my symptoms so I can actually function day-to-day.

[Hidden]

I still have my period but the pain I have from the endometrioma definitely hits mid cycle. Around 7 years ago they removed the cyst and the pain completely stopped, so I'm hoping they'll do the same again..is there a reason they haven't removed your endometrioma?

[Katiahead in reply to Hidden]

That's good to hear. It is a 3 year wait for surgery. My gp asked for me to be moved to acute on the waiting list this morning, so fingers crossed it should be done in next 6 months. I have one 15cm and one 13 cm. The smaller one is the most painful as it's attached to the ovary so I think the ovary will be removed too. Such fun being a girl!!

[Hidden in reply to Katiahead]

Ouch! I feel your pain. Fingers crossed for you. Xx