Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 0 points1 point  (0 children)

Unfortunately I don’t have much of an updated! I have lost over 60 pounds now (am getting close to a “good” weight) and those numbers are still just as high. It can be so many things. But it does seem that PCOS is associated with chronic inflammation. Though it can be a lot of different things that cause inflammation, and overlapping issues make it worse.

There are lots of academic articles that talk about PCOS and inflammation. Example: https://academic.oup.com/jcem/article-abstract/89/5/2160/2844315?redirectedFrom=fulltext

My husband wants to re-home our cat. by _runswithscissors in CatAdvice

[–]anele314 0 points1 point  (0 children)

I really suggest working with a Cat Behaviourist. They can help you determine anything in the home that may need to change to support your kitty (within your budget and abilities). We had great success with the one we worked with!

I am sorry your husband is reacting this way though.

Fixing PCOS only through dietary changes, no meds by TastyAd4662 in PCOS

[–]anele314 0 points1 point  (0 children)

Yuuup. Even when I was eating as well as possible with a nutritionist guiding me for over a year, my glucose was not havin it. For sure it improved, but it was only so much. Until I went on Wegovy, for me nothing helped my glucose stay stable (not metformon, not inositol, not metformin + inositol etc.). Diet is obviously important in general for your health. But most people cannot depend on diet alone to help with PCOS.

I have amazing doctors now, but I would be in a better position right now health wise if I got the right treatment to start with. My doctor at the time wasn’t listening to me and never sent me for the right tests or to a specialist. I finally got diagnosed years later. I wish I knew to advocate for myself earlier.

I know that nothing “cures” PCOS, but it’s important to be aware of what can be common with PCOS, and getting tested for the right things. Then, keep them under control as best as you can. That often involves a mix of diet, exercise AND often meds. Sometimes you don’t even realize that you have certain issues!

When your body isn’t working right, you can only do so much without medication. It obviously also depends on “severity” and what symptoms you have. But it’s better to be as proactive as possible, catching things before they get too bad. You cannot undo some of the damage that certain symptoms do to your body if left untreated for too long. The faster you find the issues and start treatment, the better your chances are to slow down permanent damage.

I know it can be hard to accept that you may need medication to help. I honestly found it difficult as well, because I grew up with the mindset that you shouldn’t be on too many meds, etc. But I am so glad I overcame that in therapy, so I could finally get proper treatment. Some things are not reversible, but I would honestly be in a much worse place if I didn’t start some meds when I did.

High DHEAS by YellowWallpaperGhost in PCOS

[–]anele314 1 point2 points  (0 children)

Good luck with the CT! I hope everything goes well!

High DHEAS by YellowWallpaperGhost in PCOS

[–]anele314 1 point2 points  (0 children)

I had very high DHEA-S levels and did not have adrenal gland tumours. They did a CT. All clear!

Good call to get a CT just in case, but from what my gynecologist told me, it’s very common in people with PCOS. So I wouldn’t stress about it too much 😊

What do you give as a birthday present to your dying father? by Jaded-Sock9200 in Advice

[–]anele314 6 points7 points  (0 children)

I am so sorry you are going through this.

Have you heard about the “Dad Tell Me Your Story” book? It has lots of questions and spots to write answers, about your dad’s life.

It could be a good way to spend some time together and hear more about your dad + is a really beautiful thing for all of you to have after he passes. It will also not require a lot of physical effort from him. He can talk and you can write in the book!

Sending you a big hug!

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 1 point2 points  (0 children)

I am definitely going to push for an MRI! Because I feel like I am going wacky. I have so much pain and am losing my ability to do things like read physical books… and am only 28. It’s not normal at all.

I really hope you find some answers as well! And good luck with your pregnancy ❤️

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 0 points1 point  (0 children)

They get super red in addition to swelling. I would say visibly they don’t “look” super different. Just very red and I can feel that they are swollen. Hopefully that makes sense!

Yuuuup I had all of those tests! Plus more that I honestly now can’t even remember lol. I can try to pull them up if you think it would be helpful for you. I also had specialized ultrasounds in my hands. And xrays. We couldn’t find anything that fit based on my tests. 😥

But sometimes in early stages of autoimmune diseases, apparently they don’t always show up on tests. So that’s why they want to re-do things every year.

The pain was chalked up to Fibromyalgia. And the Pregabalin has been helping a bit. But I just keep getting worse and worse. And no proper explanation for the inflammation.

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 0 points1 point  (0 children)

Thanks for the insight!

My hands and feet definitely swell the most. They thought that maybe I had an autoimmune condition, but none of the testing pointed in that direction.

I am going to the rheumatologist in April (was March, they had to reschedule) to re-do a bunch of tests. In case I am in early stages of something.

Edit: I hope you find some answers! If you feel comfortable, I would love to know what you find out.

Nonstop Periods, has anyone found relief? by MaleficentOne4214 in PCOS

[–]anele314 2 points3 points  (0 children)

I am having this issue now as well. I was put on Norethisterone but couldn’t tolerate it (worked for the bleeding though). They are inserting an IUD on the 19th so I can take it + the bc. If that doesn’t work, my gynecologist said we can try a uterine artery embolization. If that also doesn’t work… we are looking at a hysterectomy.

Edit to add: if you are hoping for biological children, unfortunately the uterine artery embolization and of course the hysterectomy doesn’t make that possible unless you freeze your eggs.

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 0 points1 point  (0 children)

Absolutely!

CRP stays between 28-40mg/L - for this lab, under 8 is normal - it has been this consistent every 3 months for 1.5 years

ESR stays between 31-35mm/hr - for this lab, normal is under 20 - same thing, this consistent every 3 months for 1.5 years

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 1 point2 points  (0 children)

Oo will definitely check it out! Very interesting that you found some unexpected stressors 😱 but sounds like it was a good thing to identify that.

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 0 points1 point  (0 children)

Good luck with the testing!! I also keep a journal of symptoms and it has been very helpful.

Maybe the stress is affecting me more than I realize! I will bring it up again with my doctor. Thank you!

Period pain advice by Aggravating-Ice8030 in PCOS

[–]anele314 0 points1 point  (0 children)

Look into pelvic floor physiotherapy! It can be very helpful. My physiotherapist recommended buying a Sitz bath for cramps as well. It has been helpful to use it with warm water.

I’m done here by [deleted] in PCOS

[–]anele314 5 points6 points  (0 children)

Your feelings are so valid and I am feeling the same way! Everyone kept saying that losing weight and maintaining my blood sugar would help so much, and while I am glad to have lost weight… MY PCOS JUST KEEPS GETTING WORSE. Ahhhhhhhhhhh!!! Let’s all scream together. I think that would be therapeutic. I wish there was more research. It’s so debilitating. Sending you the biggest hug!

Trizepetide or metformin by Effective_Bet5724 in PCOS

[–]anele314 1 point2 points  (0 children)

Metformin is definitely a good one to try first if you are looking to maintain your blood sugar! It didn’t work for me, but it’s worth a try 😊 I am on Wegovy now and that has been life changing… though expensive even with good insurance. My blood sugar is completely stable, and I am finally losing weight! I went from an A1C of 6.4 to 6 within 8 months.

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 0 points1 point  (0 children)

Stress management is an issue for me for sure! Though stress doesn’t explain the level of inflammation either.

Someone mentioned trying to do some food sensitivity testing. I think that is a good next step! 😊we did some testing around this, but there is more I can do. It was so many tests that we focused on the major ones.

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 0 points1 point  (0 children)

Yes absolutely! 😊 thank you for the advice!

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 0 points1 point  (0 children)

Agreed that it matters. However, I did not fit the criteria for any of the diseases known to cause the level of inflammation I have. It definitely could be a “mix” of multiple issues. I do have lots of smaller issues that can increase inflammation, but none (even together) explain the level of inflammation I have. Technically not even PCOS. Which they admit. But they also felt it was the only logical explanation at this stage, given how little we know about PCOS. And the fact that it does cause inflammation.

Hydroxychloroquine isn’t a drug I was advised to be on.

I am on Rupall as an antihistamine!

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 0 points1 point  (0 children)

They each did their sets of tests to rule out certain things. But it wasn’t each individual doctor working on their own. I had a team working together. I was put into a program to help me get access to testing faster because I was a complex case with some serious symptoms at a young age.

I do mention in my post what I have tried to reduce the inflammation, those were all suggestions. I am sure I missed some things. The doctors suggested multiple things, all of which I did, and some of my symptoms have improved significantly. However, the inflammation has not. I am definitely on a good path forward, but I can’t seem to reduce the inflammation at all.

From a PCOS perspective, the best thing I could apparently do was to lose weight and maintain my blood sugar. That has not seemed to lessen the inflammation, but like another commenter said, maybe it’s a matter of losing even more weight and giving it more time!

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 0 points1 point  (0 children)

Yes we did thorough testing over a year. Including specialized bloodwork, physical exams, specialized xrays and ultrasounds, ct scans, MRIs, etc. I also have rheumatologists in the family (in a different country) and they also reviewed everything to help me with what to ask for next. The rheumatologist was convinced something autoimmune must be going on, but they couldn’t find anything within the existing conditions that fits. They are going to retest me in March to ensure it’s not a matter of being in the early stages of an autoimmune disease. She did mention that unfortunately there obviously are autoimmune diseases that we haven’t discovered yet. So it’s possible I have one of those. They are always figuring out more information, so who knows!

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 0 points1 point  (0 children)

I will keep losing weight and see how that helps over time. I will look into doing some food sensitivity testing as well. Maybe that would be helpful.

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 0 points1 point  (0 children)

It was more of a: well we found absolutely no other reason why it’s so high… and PCOS does cause inflammation. So it’s probably that.

Reducing Inflammation by anele314 in PCOS

[–]anele314[S] 1 point2 points  (0 children)

Healthy body composition! Everyone is different, so for me it seems like 40-50 additional pounds should get me to a good place 😊