Seeking Advice on Pill Side Effects with Endometriosis

[Astro22]

Hi all, first time posting here. For a bit of context I'm 28 and have had heavy periods/general endometriosis symptoms since I was 12, but only started looking into it medically at the end of last year after some extremely painful uterine cramping and back pain and throwing up blood meant an overnight hospital visit (nothing life-threatening, thankfully!).

Given the lack of anything else under x-ray and ultrasound, both the staff at the hospital and the GPs I've spoken to are suspecting endometrosis and I'm on the waiting list for gyno (and likely a laparoscopy).

With all that out of the way, I recently got put on the combined pill to help with the fact my cramping was getting worse - I was nearly keeling over even after over a decade of being used to pretty intense pain, I couldn't make any sudden movements, and my focus and emotional state would be a mess for a week before my period, though the cramps didn't stop during. The plan was to try it with no breaks for three months before checking back for a review.

I've been on the pill for a little over a month now, and while it's worked in that I haven't bled at all, I started cramping/feeling symptoms as I usually would the week before my period would start. The thing is, they haven't stopped at all and have only gotten worse recently. I've experienced more nausea and an increase in stomach acid at night as well, but from what I understand that's not too unusual while the body adjusts to the pill, but I'm in pain at random intervals pretty much every day now - especially if I move to sit up, stand up, stop walking, or have eaten. It's like I traded out the bleeding for a period that otherwise doesn't stop, and sometimes the pain spreads down to the vulva as well, which I only mention because that really hurts.

I decided to sign up and look for advice just now after another spasm had me limping back from the bathroom and grabbing paracetamol. Apologies for the essay, but I'm sure you can understand how kind of frightening it is. If anyone knows whether this is just a difficult adjustment to the pill, something I should bring up to my GP or wait, or if there are signs I should be worried about, I'd really appreciate the advice, or even knowing if anyone has any similar experiences.

[Sophhh]

I came on here to post a very similar question I just had surgery for endometriosis and my consultant recommended the pill after surgery to halt progression. I’ve started on Lucette and been taking it for 1 week but I’ve got the worst cramps that radiate accross my pelvis and down my legs, feeling exactly like my period/endometrial pain. Like you I feel I have just traded in bad periods for 1 week for constant pains my legs feel heavy and I feel bloated and it’s difficult to stand up.

I’ve had this before when on the pill

I also can’t find any clinical evidence to show the pill actually helps with endo progression, is this true? Otherwise I’m not getting much benefit from taking it

If anyone can explain what I should do - persevere or stop?

[fairyblueberry]

I had the same symptoms after starting the combined pill with my GP, constant pain for months on top of being an emotional wreck... Eventually just stopped taking it on my own and switched to a different pill with a private doctor which was better, it stopped my periods but I kept getting period-like pain just a lot less severe.

Now I'm not on any pills and trying to survive the periods until I can get a diagnostic lap to see what's going on. Unfortunately not much advice in this situation 🙁

[Tiredgal72]

Hey, sorry to hear you are experiencing all of this! It might be a good idea to go back to your doctor and see if there are other pills/hormonal treatments that you can try as I know different ones work for different people.

Personally I get on quite well taking the combined pill back to back and I have deep infiltrating endo on many of my organs and I'm waiting for surgery to remove it. But when I tried the progesterone only pill I hated it (while other people like it) so it may be there's something the GP can give you to suit you better? I think it's a bit of trial and error.

You'll find on this journey that you have to be persistent to get the care you deserve so please make sure to advocate for yourself and see the doctor if your are in constant pain, best of luck x

[Astro22 in reply to Tiredgal72]

It's a bit headspinning realising what a complicated process it is for each individual! Like you I'm on the combined pill, and I'm glad it's been helpful to you - since I made this post my pain has eased off quite a bit, I'm glad to say. From looking at multiple forums and others' endometriosis stories, I've found a few people saying they experienced worse pain for a month or so after getting covid (which I'd gotten a few weeks previous), so I'm wondering if that was really the root cause. Given I've improved either way, I'm not giving up on the pill just yet.

I'm also really lucky to have the GP who prescribed my the pill, as she's not the first one I've spoken to but she's been treating my issues very seriously (not that you WANT to hear a doctor go 'no, you're right, this is very worrying and we want to check this out as soon as we can', normally, but i'm sure you know how relieving it is to have your concerns validated). She's definitely made me feel like I'm making progress, even if symptom management might take that bit of trial and error.

Thanks for the advice, and best of luck to you as well!