How does the pill help and I'm back in period hell.

[Peppermints]

I missed one day of the degestorol pill by mistake and I've been in agony for 8 days now.

Period from just like a year ago before I went on then progesterone only pill. Horrendous moods and the pains that made me feel something was wrong in the first place. ....lightning crotch, hip pain, such bad lower back pain and all the other associated issues I had before.

I thought the pill had changed everything and now realise it's just masking the problem.

I'm confused as I dont know why the pill helps....

Has anyone else had this???

[Christin_a]

Hello

It's totally normal. The pill/any hormonal contraceptives can help with managing symptoms. However it does not do anything to actually manage/stop endometriosis.

So if you stop taking it, your symptoms are likely to return and in some cases be worse than before. For example if you've been on it for 10years masking the symptoms whilst it's gotten worse.

[Peppermints in reply to Christin_a]

😮😮😮 this sucks. I'm on the waiting list for a lap and nearly cancelled it because i thought things were "better".Nope, I wont be doing that then....

[gettingusedtoendo in reply to Christin_a]

The pill has stopped my pain, I guess because I don’t get periods as a result. Do you think the damage is continuing and it is just masking this then? Sorry to butt in!

[HoneyBee2315 in reply to gettingusedtoendo]

I’d be interested to know this as I was told being on the pill would stop it from growing etc 🙈

[Christin_a in reply to gettingusedtoendo]

Hello so it's not actually about stopping your periods. Hormonal contraceptives help by masking your symptoms which can allow you to go years without realising that there's an issue. Or in those who are already diagnosed, it can reduce or stop your symptoms. But it does not stop endometriosis from forming, or growing or getting worse.

Yes some can find that staying in this managed state that they are fine and don't get symptoms reappear at all but that's not everyone.

[Hidden]

Hi

I read your post with interest as I too was on the progesterone only pill and came off it Dec 2020 due to horrible side effects after about 14/15 years.

In January 2021 I started having symptoms similar to a UTI only without the burning when I pee’d or urgency and no infection was detected. Then the severe burning pain up inside began, mainly feeling like it was in my bladder but also vaginally and lasted weeks on end, sometimes for months. Nothing takes the pain away.

Nothing was found on ultra scans / transvaginal scans or recently a CT scan.

I had the mirena coil fitted in May 2021 and it made no difference until about 3 weeks ago when the pain suddenly stopped (8months in). But since then I have all my horrible side effects from the pill return. Migraine , vision loss , hip pain, lower back pain , weight gain and extreme tiredness.

I’m now really concerned I have endo that has never been picked up on. I was actually going to get the coil taken out but I’m now unsure. It seems my choices are horrendous pelvic pain or horrendous multiple side effects from the coil/pill . Neither of which I want to pick.

[Christin_a in reply to Hidden]

Hello

So it's not uncommon for scans to not show endometriosis. It can be picked up in scans but it's dependent on the skills of the person reading the scan to be able to pick endometriosis up. And as it presents multi ways it's often missed. FYI NHS guidelines state that a clear scan does not mean that it's not endo, and you should still be referred if you want to.

Have you considered pushing for a gynae appointment, it must be with someone who at a minimum has a specialist interest in endometriosis and discussing what options are suitable for you?

[Hidden in reply to Christin_a]

Thanks for your reply. As my symptoms have mainly been bladder, my GP wants me to complete all the urology investigations before referring me to gynae. I’m on the wait list to have a cystoscope with dilation and biopsy of my bladder.

It’s really frustrating as I am relieved the severe pelvic pain has gone at min but the side effects of the mirena are the same as the progesterone only pill was for me. So I am really caught between a rock and a hard place.

I am sick of being sick if you know what I mean. X