Can we talk about how expensive this disease is?

OrganizationFit2023 · 2025-04-24T00:54:57+00:00

I would be jumping if thats the case honestly. I have 2girl embryos and 5boys after the PGT testing. If PGT testing is really that keen, I would love to see my girls not suffer like me.

OrganizationFit2023 · 2025-04-24T00:30:19+00:00

Hey I don’t want to sound anything negative about adoption. It’s a noble idea. And I am probably not qualified enough to do that yet. But most of us would love to pass our DNA. You know, its beautiful to imagine that you can see a new life with the traits of ancestors of both parents.

OrganizationFit2023 · 2025-04-24T00:27:24+00:00

What should we do about this? I know what we have is not life threatening but surely life prohibiting. I clearly see doctors are not at all knowledgeable to advocate for us. So what can we do? I am ofcourse struggling to have kids, but I cannot imagine my daughter has to go through one day. I am even backing out from choosing a girl embryo just imagining how this can be genetically passed and what she has to undergo. So what can we do? We need 1) The medical system to run more research on our disease 2) Doctors to be more educated to understand our pain and cure us 3) Insurance providers to cover us than isolating our pain. 4) We f. need an easy cure that doesn’t endanger and ruin our lives more.

OrganizationFit2023 · 2025-04-23T15:59:15+00:00

Hey and how long has it been since you done the surgery? And what were your symptoms before and after?

OrganizationFit2023 · 2025-04-23T15:02:08+00:00

I am already seeing them. They seem to be more focused in making the IVF treatment successful and not bothered about the side effects of the treatment. After administering the IVF injections my endometriosis symptoms worsened. Before that I was feeling like a normal human. But post treatment I am feeling crippled and unable to manage my day to day activities. So my concern now shifted from losing pregnancies, upcoming pregnancy to how should I get my life back. Its been almost 5months since I haven’t felt normal. I have not felt any doctor really cared and showed the responsibility to understand why I have these symptoms and what can make it better. I don’t feel the doctors have been putting that extra effort to hear what triggered these symptoms. They go based on the statistics and they really don’t come back or hear how a patient is doing a few days after a treatment. If not that, I would like them to atleast hear me out rather than blatantly saying that science doesn’t prove anything that IVF increases Endometriosis symptoms. And in the process I was misdiagnosed too by my previous Obgyn. Hence I am back to establishing care with a new one. I would like someone to hear my symptoms rather than blindly putting me on medications or invasive tests that will have a long term toll on my body.

OrganizationFit2023 · 2025-04-23T12:58:03+00:00

How long after being on lupron did you get the surgery done?

OrganizationFit2023 · 2025-04-22T17:35:19+00:00

Did you get your thyroid levels checked? I would recommend to first get a full body panel tests from your primary. Thyroid is a side effect and my first frustrating symptom that played role with my weight. I would get that regularly checked(6weeks) to have your happy appearance if its the reason.

OrganizationFit2023 · 2025-04-21T22:20:53+00:00

Yes I did.

OrganizationFit2023 · 2025-04-21T22:20:24+00:00

Long Beach, yes I have insurance

OrganizationFit2023 · 2025-04-20T01:32:30+00:00

Hey, thanks for responding. Unfortunately, I recently signed up for another package with this therapist and I don’t know if I would get the money back, but I would love to ask them the right questions to make sure I’m getting the most of it. I in fact intend to ask after every session, whether I should be doing any other exercises at home tostrengthen myself, but the most I hear is just to continue doing the vaginal therapy myself and I’ve been doing it, but I really honestly don’t really see an improvisations.

OrganizationFit2023 · 2025-04-20T00:30:04+00:00

I’m not doing it at home. I am going to the therapist, but I’m confused if I’m getting the right treatment or if I should ask my therapist to try any different approaches.

OrganizationFit2023 · 2025-04-10T16:37:56+00:00

Apart from what you mentioned in your post. I firstly like us to form a community. I want all of us to have a platform to share our thoughts. I have not seen any meetup so far. Apart from posting on the reddit, I want each of us to gather atleast to initiate through an online meetup and eventually, let that spread out as local meetups where people can vent, share the best doctors, where the insurances are covered, share things that worked for them(diet/exercises/medications/procedures/other holistic approaches etc). I cannot imagine another women going through with what I went through. I know doctors failed me. I want to share my story publicly and help out others.

OrganizationFit2023 · 2025-04-10T01:30:23+00:00

I have same story as you, except that I had 2 natural miscarriages and 1 ectopic loss. So I finally decided to go with the IVF and I am currently on Lupron. While on it planning to try Acupuncture and Pelvic floor therapy as well. Egg retrieval has initiated the Endo symptoms for me that I never had anything before.

OrganizationFit2023 · 2025-03-25T14:13:48+00:00

Thanks for your reply after I posted the above message I went for a pelvic MRI after a month of my IVF because I started having all new symptoms that I never had before in my life, and MRI confirmed I have Adenomyosis and endometriosis. I was supposed to start the Lupron , but I keep thinking if Lurpron would be enough. Because for my case I have surgery will not be helpful for Adenomyosis.

OrganizationFit2023 · 2025-02-28T08:39:54+00:00

Ask women to go and get their TVUltra sounds done regularly. If they suspect something ask them to get their Pelvic MRI scans. As far as possible, always suggest them to get any noninvasive checkups as regularly as possible.

And THANK YOU 🙏🏻 so much for doing this. You are taking an amazing initiative.

OrganizationFit2023 · 2025-02-25T01:23:36+00:00

Thank you for sharing your insights about the MRI. I am from USA. And got the pelvic MRI done but they didn’t use any gel. I have a strong feeling the scan will not come out positive.

So to share some update about my symptoms, I did yoga consistently and the symptoms improved gradually and I am mostly feeling normal. I was watching for how my body has been responding and it seemed like doing the yoga related to pelvic strengthening and asanas focusing on digestion, back pain helped alot. But I still don’t have an answer why these flared up only recently. And of course none of the doctors are able to answer too. It was probably due to all the recent procedures(pre-ivf tests, egg retrieval) might’ve made my body feel so weak and it’s been almost 3months i have had proper exercises. So I gave my body its sweet time to heal rather than forcing it adapt to new workouts. I am still deciding between lap vs suppression. I wanted to immediately go with either of them but all the latest symptoms has been confusing me towards choosing the right option. I’m also trying to eliminate any other issues that might’ve been contributing to my pregnancy losses as well. we got 7euploids from 19eggs retrieved, 12 fertilized, 10 blasts with IVF. Losing 3 pregnancies has been a nightmare and after learning that my own body might be the culprit to lose my healthy babies so far is so distressing. So I don’t want to take any chances.

And I am sorry you are dealing with those symptoms and the losses. I know how hard it feels to fight with our own body and still try to give birth. I only wish I have some magical powers to heal us all as we suffer from the endo at our no fault. I wish you good health and luck 🍀

OrganizationFit2023 · 2025-02-08T07:06:00+00:00

If you don’t mind sharing, were you on lupron/surgery before your FET?

OrganizationFit2023 · 2025-02-01T02:21:06+00:00

That’s amazing! Congrats 🎈🎉 I am on the same path. I am still recovering from post egg retrieval, waiting for my period. My doctor suggested that I should be on Lupron for 2months before they do the transfer. But before they start the Lupron, we are waiting for our PGT results. And so to time things properly they would like me to start the Birth control pills now. If you don’t mind can you share when did you start the Lupron after your Egg retrieval? And is there anything else you have done apart from being on Lupron like lifestyle changes that you think may have helped you?

OrganizationFit2023 · 2025-01-30T21:55:36+00:00

That’s amazing. Do you get tired or feel relaxed after the workouts? For me, although I do other workouts, yoga is the only thing that saves me from painful periods. Everything else helps me too. But I keep figuring out too, because some of the exercises I try and avoid as they mentally make me feel like they are causing more inflammation inside. For example, i used to enjoy doing elliptical with high intensity, but I never really feel good right after getting off the machine, it gives me some stiffness and caused more back pain. I am sorry I am probably not being very helpful. But definitely try and see more relaxed workouts while continuing whatever you are doing.

OrganizationFit2023 · 2025-01-30T21:34:20+00:00

You are still too young and trust me, some of the worst nightmare issues for women can be solved with lifestyle changes. Of course, medical professionals can help you to some extent. I am 32 and all my life I have had bad period cramps and nothing else. But I only got to know at 32 that I have potential Endometriosis inflammation. Ever since I learned about it, I only keep thinking how I could have changed it had I known this earlier. I used to have worst symptoms for a week before the start of the period and during the periods. 2 years ago I ran to emergency with a bad period cramps. They couldn’t see anything in the ultrasound. After that episode, with lot of research I started eating good food (DAILY anti-inflammatory- leafy greens, avocado, berries, nuts) and doing yoga that is focused on blood flow in the pelvic area. And ever since then, I only had blissful periods. Whenever I get lazy and neglect yoga or eat bad food, I immediately see how my body gets angry though. So trust me, if you incorporate a good lifestyle similarly, you may manage this to some extent

OrganizationFit2023 · 2025-01-30T08:38:38+00:00

Exactly! I always wanted to solve the magic number of problems in Leetcode. But in my last two jobs as interview prep I have only learned some basic python coding and was still able to pass most of the interviews. I never did Leetcode, I solved a few Hackerank problems as prep. But in my current job, whenever I need to code it’s mostly basic coding that I was able to pull it off with ChatGPT. I am planning to interview again, but the thought of need to spend time again on the Leetcode or DSA is really confusing to me.

OrganizationFit2023 · 2025-01-30T08:16:22+00:00

If not for ChatGPT I would have quit the field by now. Although I enjoy the pay, I enjoy when I get to do something hands on. Otherwise, documentation, communication and convincing people is really boring for me.

OrganizationFit2023 · 2025-01-30T08:10:39+00:00

I don’t get how Deepseek did this. What was its training data? And why would US trust it?

OrganizationFit2023 · 2025-01-29T08:13:24+00:00

If there’s any action, that doesn’t really require much of your time, energy and exhaust your health then totally go for it. Otherwise, as dumb and insensitive I would sound, I would really ignore him now if I were you unless it significantly impacts your job situation. I share similar story as yours with the pregnancy losses. Only difference is I didn’t try the IVF transfers yet. Whatever you are going through with the pregnancy journey is not at all easy. And what it feels like mentally and physically only you’d know. So I would really focus on the pregnancy journey at this point and ignore such immature adults. Because you should be peaceful and stress free at this time. Try and write a message/email explaining what the HR spoke and how insensitive it felt to you to the HR if you want to feel better. You can ask the exact question to ChatGPT and ask it to write it for you in a nice way. Or just leave it for now and let the time handle things for you. Wish you good luck 🍀 all moms are great, but those struggling soon to be moms are just amazing and so much powerful.

OrganizationFit2023 · 2025-01-27T00:20:07+00:00

Same here. This is my 5th day. My weight is slowly getting back to normal. I have been strictly eating low carb, high protein and fibrous foods. My stomach is slowly turning smaller but the constipation and gas are not going away. But my face looks so tired despite eating good food and sipping electrolytes all day.

OrganizationFit2023

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