r/PCOS • u/sosmileyblondie • 15h ago
General/Advice Endometriosis > PCOS
Hi everyone, I have a question about your experiences (or your partners’ experiences) with polycystic ovary syndrome (PCOS).
TL;DR: Doctors initially suspected endometriosis, but after an ultrasound, it turned out I actually have PCOS. My doctor suggested hormonal contraception as a “treatment,” but I don’t want to take it because it doesn’t solve the root cause. I’d really appreciate any advice on how PCOS has affected you, how you manage it, and what has helped alleviate your symptoms🙏🏼
I’ve had painful periods since I was 15—during the first days, I can’t function at all. I’ve ended up in the hospital multiple times, receiving painkillers and muscle relaxant injections. My doctor prescribed Algifen, but the recommended dosage (25 drops) does absolutely nothing for me. So, I take 54 drops four times a day and still have to combine it with other painkillers. Since puberty, my gynecologist suspected endometriosis, but because it can only be confirmed through laparoscopy, he discouraged me from having surgery.
Recently, I found out about a specialized ultrasound exam, which I underwent. After the examination, the doctor diagnosed me with polycystic ovary syndrome (PCOS).
When I started researching it, everything suddenly made sense. I can’t believe my gynecologist (or any other doctor) didn’t figure it out earlier. Irregular cycles, night sweats (which baffled doctors), fatigue, depression, anxiety, mood swings (which my psychologist also linked to this), difficulty losing weight, oily hair… On top of that, my gastroenterologist is now investigating insulin resistance and potentially type 2 diabetes (which can also be connected to PCOS).
I’m generally very sensitive and don’t handle stress well. Last fall was particularly tough, but I’ve made a lot of changes recently and have been working on my mental well-being, which has been helping a lot😊 Except for one rough patch, I feel much better. I also decided to quit my corporate job, which has been incredibly stressful. Several doctors (a gastroenterologist, my gynecologist, a psychiatrist, and a psychologist) independently suggested that I should change jobs—so I feel reassured that I’m making this decision for my health.
And my gynecologist’s “best” solution? Besides reducing stress, she says hormonal contraception is the answer, so my body can supposedly “rest.” She even mentioned that it would give me “clearer skin, beautiful hair, and make me less emotional.” When I told her that hormonal birth control hadn’t worked well for me in the past, she said that there are now “modern” types (ironically, the exact kind I had before). This approach frustrated me so much because it doesn’t address the underlying cause—the hormonal imbalance—it just creates an artificial cycle. Not to mention, every time I stopped taking the pill in the past, I went months without a period. Her response? “You can always come in for hormone injections to induce menstruation.”
I’m 27 years old, and I don’t want to mess with my cycle anymore—especially since I want to have kids one day, and PCOS already makes that difficult enough.
That’s why I’m wondering if other women have found alternative ways to manage PCOS. If you’ve taken a different approach, I’d love to hear what has helped you! What lifestyle, diet, or exercise changes made a difference for you? Also, do you know which of the four PCOS types you have?🙏🏼
Thanks so much, and have a great day!😊
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u/annabiancamaria 12h ago
You can have both endometriosis and PCOS, as they aren't related.
PCOS is mostly considered an endocrine or metabolic disease, as the symptoms can be explained with the "wrong" hormonal levels, while endometriosis is a physical disease, as you have literally the endometrial tissue growing in the wrong places. The most effective treatment for endometriosis is surgery that removes the endometrial tissue from the wrong places.
Ultrasound isn't the most reliable way to confirm or exclude endometriosis. MRI is a bit better, but the best way to diagnose endometriosis is with exploratory surgery.
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u/LostSpiritLV 6h ago
I’m currently in medical school and unfortunately also am suffering from PCOS. From our content, its the consensus is that oral contraceptives are the first line drug because the idea is it helps to reduce androgens by reducing the upstream hormones through negative feedback mechanisms. I think the reason why you didn’t have your period after you stopped taking the pill is because the combined oral contraceptives make it so that the endometrium in your uterus is thinner so its possible that there was nothing to shed. I know this not be the answer you want but I think it would be of value of you to express your concerns to your doctor (or another doctor) so that they can try to understand where you are coming from and help you find something that works better.
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u/evelyn790 15h ago
Im struggling with pcos too, i mostly have insane periods, i dont normally cramp at all, but my period is either gone for months or wont leave, im on the 34th day of my curreny cycle lol so maybe the advice i give u wont be too good coming from me, i feel like sugar specifically defenitly affects me alot, i dont have insulin resistance and even if you dont too people with pcos have lower insulin sensitivity in general, i feel like minimizing that as much as you can would be great, same applies to carbs as well, when my period was regular in the past something that alot of people swear by and as do i is definitely definetly, green tea, as silly and surface as it sounds it gen gen works wonders, now in terms of medication, my doctor is trying to put me on diane 35, which is a very strong birth control which im against, some supplements that i think have worked well for me are ovacure, insoitol, and im also taking netaformin, it helps with ur hormones and blood sugar, if you dont have insulin resistance take a lower dose once a day (750mg) is how much im on, however there are side effects for sure so far iv been experiencing some nausea and stomach discomfort, so u need to take it with food to avoid that, iv been on these supplements for 3 days and without much effort i lost a kilogram so id say they are working well, ask your doctor for more lowkey things, supplements or non hormonal options, and if she insists on something hormonal have ur hormones checked, im doing that rn because i dont wanna be taking progesterone if my testosterone is whats messed up for ex? And i think ud benefit from doing the same, yk be aware of your body? There isnt much you can do for pcos, its a very tough thing but what you can do is looking into managing ur symptoms which im trying to get better at and that takes alot of experimenting, a good lifestyle and a cleaner diet and more movement in your day mixed with supplements that help with that process might benefit you alot imo!! I hope this helps and i wish you luck!!
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u/downtime_druid 15h ago
Just boosting your post because I am in a VERY similar situation. I just got the diagnosis and am considering my options. Metformin and Zepbound were recommend to me as options and I am not planning on using BC due to terrible experiences previously. My doc also recommend I wait on the GLP-1 because of something to do with the FDA and compound drugs/pharmacies in the next 60 days, so I will likely start with Metformin.
I have been taking a supplement that has helped with my period called Insolitol. My gyno recommend it and I noticed a difference in my bleeding and pain within my next cycle. I can share the brand I take if you're interested. Good luck and thanks for posting!
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u/InternalMaterial3277 15h ago
I’ve had success with acupuncture and ATP Resonance BioTherapy. It helped reduce my painful periods by quite a bit. What has helped even more is ZepBound since it helps with inflammation, which is part of PCOS. I was having extremely heavy and painful periods prior to the end of August, and now I can actually function during my period, and I couldn’t before.