Help please! Pain every month or not?

[Hjs23]

Hi ladies, just a quick question, those of you with confirmed endo, does your pain happen every single month? I’m not diagnosed yet but am due to have a laparoscopy in the next few weeks. I came off my pill in December to see what my symptoms were like without it, I thought I was going to have a huge flare up, but my period was very late (it came after 43 days), was fairly light and I had no pain before, during or after (as of yet, I came off a week ago?) Can this happen with endometriosis or would pain usually occur every single month?

[Jacjac12]

Hi there! So, first off it’s worth noting that one of the tricky (and sometimes frustrating) things with endo is that everyone experiences it differently and so it’s hard to say what’s ‘normal’ and what isn’t. Essentially, endo is a disease and so none of this is ‘normal’, but each one of us will have our ‘usual/normal’ endo-related pain and getting familiar with yours can help to anticipate it, try different soothing therapies and see what works best for you.

Also worth nothing that it can take a while for your body to revert back to its natural cycle after being on hormones. It took me about 3 months to get back to something semi-regular.

Now to your question I also came off the pill after many, many years of trying the combined pill, progesterone-only pills, and two different IUDs, all with really horrible side effects. My pain since stopping the pill has been infinitely easier to deal with, because it’s more regular and I can finally get to know my own body & how it deals with the disease. This has been my experience - I know many women can tolerate hormonal therapies well and so it’s really individual. Obviously, without hormonal treatment your endo is more likely to advance, which brings its own set of issues... So it’s important to talk to your doctor (gp/gynae) to find a suitable option for you.

Personally, I have a really bad cycle every other time. So, one month I know will be bearable and the next will be horrid. I have confirmed deep infiltrating endometriosis on my utero-sacral ligament, and a tendency to develop painful ovarian cysts on my right ovary (the ‘problem’ side in terms of cyclical pain).

I’m not sure if this helps! Hang in there and keep pushing for your diagnosis. We really have to be our own advocates, which is unfair and can be incredibly draining. But you’re doing a great job

[MissPickles in reply to Jacjac12]

I havent yet had a diagnosis of endo but my 'problem' ovary is also the right side (polycystic), and I think the pain is worse on months when I ovulate from the right.

I always thought the ovaries took it in turns but apparently not, sometimes I get ovulation pains 2 months in a row on the right, then nothing the next month - so my assumptiom is that when there is less pain I'm ovulating from the left. Sorry that is totally unscientific - but it makes sense in my mind!

[Jacjac12 in reply to MissPickles]

I only just got my diagnosis last month, after a cyst ruptured and I ended up having an emergency laparoscopy. I’ve suspected endo for years, though. Definitely trust your gut & listen to your symptoms and continue fighting for that diagnosis!

I’ve looked into this since reading your post and apparently we don’t necessarily alternate between ovaries regularly! It’s whichever egg that is most ripe that is released, no matter the side. I had no idea. I guess that makes it harder to anticipate pain, which is frustrating. But on the nice side you get a ‘break’ of sorts in between

I hope you get answers soon and find things that work for you to manage the pain and symptoms!