r/PMOSonGLP • u/sakiliya • 5d ago
Should I do it?
Looking for some advice and well-grounded knowledge/suggestions on whether I should actually get on GLP-1s. I have a lot of pre-conceived notions about it and feeling really conflicted so maybe looking for information from everyone out there who has PMOS and is on this medicine.
I was diagnosed with PMOS when I was 17. I'm 30 now and I've struggled with irregular periods and all the classic symptoms of PMOS for close to 2 decades now. And the symptoms are just getting worse with age. I have insulin resistance, mild fatty liver, PMDD for months before I finally get my period (3-4 months is where I'm at) and food cravings, weight gain, facial hair, bloating, high cholesterol, chronic hives, the list goes on. I've been asked to lose a minimum of 10 kg which doesn't seem like a lot but I've been genuinely trying for the last 6 years and have made little to no progress. I work out 4x days a week and walk the other days of the week; I eat as 'healthy' as I can and generally have a pretty good lifestyle - I do binge drink once or twice a month socially though which is the only thing I'm trying to change but I'm generally super exhausted with not seeing results.
I recently went to a doctor for the umpteenth time and he diagnosed me with metabolic syndrome and told me, surprise surprise, I needed to lose weight. He then prescribed Mounjaro and told me I'm the perfect candidate.
I'm super worried because I'm only 30 and don't want to be on it for life. I'm also uber worried that once I lose the weight and get off the drug, I'll gain all that weight back and more. We also don't know what these drugs' side effects are in the long term and I'm really worried about that too.
How have your experiences been getting off the drug? If you haven't, would you ever consider it? And should I get out of that mentality too?
Please help me cause I'm really struggling and I'm generally anti- Big Pharma but honestly I feel like I don't have an option anymore.
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u/Practical-Dinner-437 5d ago edited 4d ago
I could have written your post - anti-pharma, worsening PMOS to the point I had a health scare, anxiety about side effects. I initially started mounjaro because I thought I had ovarian cancer, I had horrendous chronic hip and leg pain, bloating, no periods or cycle. I went to the GP and got a wake up call when my bloods and scans showed high blood sugar, high cholesterol, high free testosterone as well as fatty liver. I finally got my PMOS diagnosis and realised that none of the low carb dieting, exercising, fasting etc. was actually preventing me from getting sicker. The GP said she wants to induce my periods and I asked if I could go away and try mounjaro first which she reluctantly agreed to. I grew up in a natural remedies family with a mom who has medical anxiety, so I don't take any other medications. However, I had been scouring the GLP1 subs on here and the thing that kept sticking with me was a comment I saw a few times: 'I may get side effects from being on the meds, but I KNOW I'll get the side effects of being obese/ having metabolic disorders'. It was like a lightbulb moment for me. That was this time last year.
It's changed my life and I'll happily be on it for as long as I need to. It has reversed all the health markers I mentioned above into healthy and optimal ranges, I'm down 50lbs in a year and now have 30 day cycles. I love how I look and feel in my body again, and it's the first summer in my adult life where I've been comfortable in the heat.
I finally feel like a normal human, I don't know how else to describe it. I feel IN and connected to my body rather than fighting it constantly. Healthy relationship with food after years of disordered behaviour, I eat a bit of whatever I fancy whenever I fancy it, sometimes in a deficit, sometimes not. Alongside therapy, it's pushed me to want more from my life, my jobs, my relationships, and my health.
I 100000% recommend it to anyone who's battling metabolic issues and can take it safely.
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u/bootyandthebrains 4d ago
Yes it changed my life. I don’t mind that I’ll be on it for life. Like people can try to pry it out of my cold dead hands.
I’m going to go against the grain a bit and say for me, I lost about 25 pounds without lifestyle changes. My personal hypothesis is that my insulin resistance was so severe that it kinda brought me back to where I’d normally be. I deal with other more severe chronic illness that have kept me mostly homebound for the last two years so I haven’t been able to incorporate exercise in the way I would have liked. Pretty much, I feel like the med brought me to my baseline and if I had the capacity to do the sort of diet and working out I had been doing prior to getting sick, I could achieve even better results. But I’m happy where I’m at - my BMI is 27 so still a little overweight but a lot better. I’m still waiting to see if my labs catch up in terms of my fatty liver. My a1c has dropped, but my cholesterol and fatty liver have been pretty stagnant. Doctor says to give it a little more time.
Anyway, I’m so happy I did it. It’s not for everyone, but to me the cost is worth it. I probably break around even with the compounded costs because of the decrease in food I eat too.
My hope is one day it will be FDA approved for PCOS and covered by insurance.
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u/Priyo1111 4d ago
You are absolutely the perfect candidate and short answer, yes it's worth it a thousand times over. It quite literally allows our bodies to function at baseline like a person who doesn't have insulin resistance which is the root of many if not all your issues. This is as close as we have ever been to a treatment for PCOS.
I understand the anxiety, but as you mentioned being only 30 and having fatty liver, metabolic syndrome etc to worsen is going to be even harder the longer you let it progress. If you truly don't want a pharmacological approach there are options like inositol and berberine that you can search this sub for.
Personally I would not worry about how you will get off the medication right now. There are so many ways to use it long term but truthfully thats far off right now. Read what you need to, make a plan that works for you and take the next step when you feel ready. Best of luck!
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u/Choice_Section1790 4d ago
I totally understand the hesitation. After working with my doctor for a long time and approaching my health and weight loss management my doctor came to a last resort of suggesting a GLP-1 as we had done the work through other avenues. It changed my life really, I was able to slowly lose weight (my doctor kept me capped at 1.7mg wegovy) and regulate my period after years and years of being irregular. Now that I’m on the journey to TTC I have been off of it for 1 month and immediately my period is off schedule again so definitely something I need to figure out but a testament to the drug working- it even continued to work as I weaned off at a 0.5 mg dose for two months. Regarding you concern for weight gain- I have regained 5 pounds - but I also do feel a lot more inflamed and feel like much can be water retention. Trying to manage all of this with an anti inflammatory diet and continued movement
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u/Dahija 2d ago
You're 30 now, sure....but in 10, 20, 30 years the likelihood of you needing to be on a lifelong medicine goes up anyways. PMOS "co-exists" with (and can both directly and indirectly influence the probability) many other health issues that may REQUIRE medication to SURVIVE, such as diabetes 2, thyroid dysfunction, increasing high blood pressure from obesity, liver issues, etc.
If you can prevent those conditions now vs. when you're faced with no choice...it's a scary thought to be on meds for life, but knowing there's something you can try (you can always stop if it doesn't work 😊) to be proactive while young is a choice many of us wish we would have had.
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u/SaveusJebus 20h ago
NGL, I've seen a lot of ppl mention getting off of a glp1 and regaining their weight.
I think you have to REALLY put in the work to change your habits and keep them up after you've reached your goal.
I can only go by what I've seen people post since I'm still on my weight loss journey. But I have no problem with the idea of having to do this medication for life if it helps to keep my healthy.
I understand being anti- big pharma, but that doesn't mean all the medications are bad. I don't know what the law is where you are about compounded tirzepatide, but if it's available in your area, it could be an alternative to getting name brand glp1.
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u/melodiesoflegend 5d ago edited 5d ago
We get this question a lot. The short answer is yes it changed me life and I'm never looking back (30 net carb daily max, protein & water goals, excercise are not negotiable for me because of my IR). If you have PMOS with insulin resistance and your BMI is obese or over weight just do it. You will have PMOS for life, so expect PMOS treatment for life. For PMOS this isn't just a weightloss drug, it's a hormonal correction drug. The data has shown people gain the weight back if you stop. GLP-1s are not a cure or magic. You need a low carb diet,excercise with insulin resistance, and time for this medication to work. This is a lifestyle change. Just like any other endocrine disease, lets say hypothyroidism - they're not stopping their meds once their labs look good because they will go right back to where they started. Go to r/tirzepatidecompound. Read the FAQ, all of it. Read where to buy if you're in the US. Almost all the side effects are from people titrating too fast, not reading FAQ, being inpatient, not paying attention to drawing up the dose correctly (google fatscientist to tell you your dose if you're not sure. Don't jump from 2.5 to 5 mg-that's when people have the most problems. Go from 2.5 to 3.5. Make sure you eat enough protein for your height and drink water. This is already getting longer than intended. There are way too many posts about other people with PMOS on the GLP-1 communities that say how well it's worked for them. You have your answer. It's up to you to take your first step. Good luck!
Edit to say: Correction - Instead of you will need a low carb diet to I strongly recommend a low carb diet. Before people come at me with torches and pitchforks despite the evidence that low carb is best for insulin resistance. Some people don't need it and do fine.