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PCOS

LookingforAnswers15

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LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted

Hi all,

I have a question regarding ovarian cysts. I saw a gynecologist today and she found some. I knew I have had one for some time but I was told that it was a water cyst that comes and goes and nothing I needed to worry about. Although no one has told me that I have PCOS, if I am not mistaken,  having ovarian cysts is PCOS. At some point, I was recommended taking birth control pills, which I took but I do not think they helped. After I was diagnosed with celiac, I stopped taking birth control.

So today, the doctor stated that ovarian cysts, especially the one that I have had for some time, can mess up my ovarian wall (or something like that) and that I should be on a hormonal therapy to try to get rid of them. However, she was not sure what to prescribe me since she did not know which pills contain gluten. She also told me to look at birth control pills. I went to the pharmacy and they found one kind of hormonal pills that has corn starch, which I am also a bit hesitant to take since I might be reacting to corn. I called the other hospital's lab and they promised me to have my test results by the end of this week, so I hope they tested me for corn.

My questions are:

1) If you are a celiac and need to take medication/hormonal therapy, which medicine were you prescribed (I am in Europe so I am hoping that even medicine is called differently, I can find something similar to it), and

2) which birth control pills do you use?

I did not expect her to find more than one and to be this concerned. Another thing to worry about... 

 

 

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cyclinglady Grand Master
cyclinglady
Posted

What about topical (cream or patches)?  I have used both for hormone replacement therapy.  Are there compounding pharmacies where you live?  They can make the topical or a custom oral to help you avoid corn or gluten.   

I do not know if these are effective for PCOS.  You would have to do the research, but I do not see why not.  

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted
  • Author

Hi Cyclinglady,

good idea. I will definitely look into it but I do not think it will be possible since I have never heard of compounding pharmacies here. I have to figure out something. I will definitely ask. I really need some good news. I just feel it is one thing after another and of course I need to keep fighting and figure this out. Even this doctor today told me I should not be using forum and internet in general to try to figure things out. Thanks to this forum, I figured out about so many things that no doctor has mentioned to me. 

None of us imagined having to deal with celiac and other issues. I am really tired of dealing with all of this. While my friends are planning their weddings and having kids, I am hoping not to be diagnosed with other AIs. I am genuinely happy for them and take time to pick perfect presents for them but later I wonder if I will ever get to experience any of this. This has been on my mind even more after this appointment today and the only thing that I can even focus on (if I have energy and feel somewhat ok) is trying to figure out what can help me feel better. I really think that only people on this forum understand what I am going through. 

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted
  • Author

Has anyone used Chinese medicine? I came across "sairei-to" and it seems to be helpful with autoimmune issues in general. However, I really do not know anything about Chinese herbs/medicine so I wonder if it is really helpful. If so, is it possible to order online? Thanks

bartfull Rising Star
bartfull
Posted

Not familiar with that but I know there have been studies claiming that oolong tea (not black tea and not green tea) can help to calm the autoimmune response. There is one study from NIH that I could barely understand (Google "oolong tea suppress immune response"), but this link is much easier to understand: Open Original Shared Link

Galixie Contributor
Galixie
Posted

PCOS is a diagnosis of exclusion which means that you need further tests before it can be considered PCOS. Just having cysts on your ovaries doesn't automatically mean it is PCOS. In true PCOS there is also hormonal imbalance which is measured through blood tests. Finding out which hormones are out of balance is essential to figure out what the correct treatment is. Treatment is also often based on whether or not you are currently trying to conceive. If you are not trying to conceive, most doctors will advise taking some kind of birth control pill which can mask symptoms but not actually treat the problem. For those trying to conceive, sometimes doctors will prescribe the diabetes medicine Metformin. The science is a bit murky, but it seems to help some PCOS patients. (If you take Metformin, be aware that it can lower your vitamin B12 levels.)

If the only test you've had done was an ultrasound, you should ask about the related blood tests to confirm the diagnosis. You should probably be referred to an Endocrinologist for those additional tests.

LookingforAnswers15 Enthusiast
LookingforAnswers15
Posted
  • Author

Thanks Galixie. I have to go back after my next period for another ultrasound and I think she will decide then what we need to do next. You are completely right. If there is a chance that I have some hormonal imbalance, I should know which hormones are out of balance instead of just putting me on some hormonal therapy without any prior tests.  Thanks again.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
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