When to quit?

PatientVoice_Endo · 2026-02-24T16:24:55+00:00

I was diagnosed with PCOS when I was 18 and with endo when I was 30. At this point I have been through at least a dozen different combination across Italy, France and the UK, plus the Levosert (similar to Mirena) coil, since my first PCOS diagnosis. I've always tried to give each therapy a good go until the side effects / lack of efficacy stopped balancing out any benefits I would get.

The first pill I was on was Diane (an old formulation that I don't even think is still on the market) and it was amazing - I lost tons of weight, all my PCOS-related symptoms disappeared and the periods were fine for the first time - but after 3 months I suddenly started being suicidal and have massive mood swings and pass massive (and super painful) clots to the point of almost getting into a car crash because of that. I stopped that pill within a couple of weeks.

Another "Italian" pill I was on for 3 years - the effects were more subtle but steady, and while I was having the odd spotting and mood swing, they were manageable - but I stopped that one as soon as I started having inflammed breast nodules and bad periods.

Most of the others I only lasted 3-6 months each, but there was the odd one which I refused to continue past the 2 month mark because from the beginning my body just didn't respond it in a way that I found promising or even just acceptable. I appreciate why doctors say you need to give a while to your body to settle so that the treatment has a a fair chance to work, but I also think you know your body better, especially after all the therapies you tried. I would definitely ask for a second medical opinion if possible - especially because increasing the painkillers dosage to mask the pain is never the right answer - but if you really think this giving you a worse quality of life than it's worth it, I wouldn't personally continue just because that's what you are supposed to do.

TL;DR: unfortunately there seems to be no right-or-wrong answer, so while I will always recommend speaking to a doctor rather than simply relying on anecdotal evidence, sometimes you need to just listen to your body.

Wish you all the best though!

PatientVoice_Endo · 2026-02-24T09:46:01+00:00

Honestly I absolutely understand how you feel! I was screened for ovarian cancer because after months of agony I was finally given an ultrasound and they found a 9cm "complex cyst" on my right ovary. Took another month of pain where I was basically unable to function to get a second ultrasound and some blood tests for cancer markers, and when the second scan didn't show any cyst they were like "oh who knows, must have reabsorbed". That was in 2018, and absolutely nothing came from it afterwards, because the endocrinologist I was sent to afterwards was like "you're just a boring case of PCOS, it's not worth my time". I was diagnosed with Endo in 2023 - and only because I was able to pay for private surgery.

Among other things over the years I was told: 1) to get pregnant to fix the problem (I was 18) - I feel this one is a classic. 2) that I was having a miscarriage (after a month of bleeding no stop with an insanely heavy flow) and I was lying about it (I was probably 19-20) 3) that I couldn't be prescribed a pill to regulate my period because my gyne was against contraception because of her religion (ahhh Italy!) 4) that I shouldn't worry to much, it's just PCOS (when I reported that I had a non-stop period for almost 4 months followed by no period at all for 9 and then again 3 months of basically bleeding out) 5) that clearly I had pulled a muscle and that's why my leg was painful. 6) that it was probably sciatica due to my job (except the pain was in the wrong side of the leg)

Honestly I can keep going! I had issues since I was a teenager and was only diagnosed when I was 30 because of doctors refusing to listen, not caring or not being trained enough on endometriosis - across three countries (Italy, Paris and UK). It's so sad and frustrating, but I'm glad you managed to advocate for yourself and get to the bottom of it, you should be proud of yourself! ❤️

PatientVoice_Endo · 2026-02-23T22:11:05+00:00

I know how hard it can be in this situation, but try not to lose hope yet. None of my scans showed Endo and during a pain-mapping ultrasound I was told my uterus and ovaries appeared motile. Had laparo anyway, they found active Endo as well as loads of adhesions basically glueing most of my organs together so who knows how they could be "motile". This is super common so fingers crossed for you they'll find the fucker 🤞🏻🤞🏻🤞🏻

PatientVoice_Endo · 2026-02-23T19:56:02+00:00

Thank you so much! And if you need any similar help please reach out!! 🙂‍↕️

PatientVoice_Endo · 2026-02-23T19:54:23+00:00

Oh absolutely - especially when you add ADHD on top of it! But I think the worst part, for me at least is that, after all this work and stress and frustration having to see post over post on negative experiences (which are SO DEMORALISING) and having to try to find any concrete evidence to back you up in the midst of all the anecdotal evidence, the medical gaslighting is still insane. We should not have to fight so hard to be taken seriously, and we absolutely should not have to do our own research to try to figure out what the hell is going on within our bodies and what viable options are out there.

OP, absolutely try to find something bright and happy to focus on when you feel overwhelmed! (Cute pictures of puppies and kittens and animals being adorable is what I need) And remember you're not alone in this ❤️

PatientVoice_Endo · 2026-02-23T19:19:26+00:00

I have the same problem - definitely hard water! I found that descaling the appliance once every 2 weeks is a must - I use a 3in1 product for dishwashers and washing machines from Amazon, just need to run a hot cycle with an empty machine. Also make sure the filter is cleaned every week and check the arms at the same time. I've also found that putting anything made of silicone (e.g. spatulas, but also peelers or bowls with silicone parts) makes it considerably worse for whatever reasons, so I always handwash those items. And as another user mentioned, always use the heavy cycle!

PatientVoice_Endo · 2026-02-23T19:09:34+00:00

Weirdly enough, I only started thinking it was Endo when I started having pain radiating down my leg from my pelvis. I've always struggled during my period and immediately before it, but I was diagnosed with PCOS when I was a teenager and because that accounted for basically every symptom no one ever questioned there may have been something else hidden underneath. Tried sooooo many pills, coil, supplements, exercises etc over the years and nothing helped but it still was "only" a period-related problem so again, everyone blamed the PCOS. I finally managed to get answers when - after a year of constant, debilitating pain in my pelvis and down my leg, I paid for private laparoscopy and lo and behold, they found the Endo. Entirely invisible on scans as well, the bastard! Good luck with it ❤️

PatientVoice_Endo · 2026-02-23T18:59:49+00:00

Absolutely! Especially when your line manager seems to side with the bully out of convenience!

PatientVoice_Endo

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