The questions of menopause mirror the uncertainty of sarcoidosis

Menopause is something that affects just about half of the population eventually. But for many, it remains a giant question mark, or a whole bunch of questions. In that way, it resembles sarcoidosis.

There are the basic questions about it: Am I currently going through it? What stage am I in? How do I even know? Of course, there is one obvious telltale sign for most people with uteri, but that doesn’t apply to me.

I had a hysterectomy in 2008 due to fibroids, or benign tumors, in the wall of my uterus, so I haven’t had a period in nearly 18 years. The doctor removed my uterus, but left my ovaries so I wouldn’t go through menopause while I was so young. Unfortunately, that meant I’d continue to have painful ovarian cysts for years. I’ve also had endometriosis since the early 1990s.

After I was diagnosed with sarcoidosis in 2015, I wanted to learn all I could about it, about these “small clumps of inflammatory cells.” Could granulomas have been mistaken for endometriosis so long ago? Were they related to the fibroids? The cysts? I asked my gynecologist. Her answer: “Maybe.”

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I presumed I’d begun to enter pre- or perimenopause, so I asked my doctors about the menopause cycle. What does it mean for me? What do we do about it? I was told I didn’t have to do anything about it as long as the symptoms remain bearable. Menopause is just “a natural process,” not a disease, after all.

More questions. Are my symptoms bearable? Actually, what are my symptoms? As I considered the most common symptoms of menopause, I realized I already experience most of them. Is it possible that some of the symptoms I’d always thought were from sarcoidosis were actually caused, or at least worsened, by menopause?

That’s a lot harder to answer. After all, menopause symptoms are a result of hormonal changes, but hormones are regulated by the pituitary gland, which can be affected by neurosarcoidosis. To try to gain some clarity, I looked into the most common menopause symptoms, but found that many of them are present in sarcoidosis.

I created the chart below to break down which symptoms of menopause may get attributed, at least in part, to various types of sarcoidosis, to common treatments for it, or are just the reality of living with the disease.

It may be impossible to determine which of my symptoms are caused by menopause and which by sarcoidosis. More likely, they are probably influenced by both, to varying degrees.

I’m doing the best I can to manage my sarcoidosis in its various manifestations with azathioprine, hydroxychloroquine, and intravenous immunoglobulin infusions, along with medications for my other conditions.

But is that the best I can do? If some of these symptoms are a result of menopause, can they be alleviated by treating it? This is where it gets complicated. With a multisystem, immune-mediated condition like sarcoidosis (not to mention my autoimmune comorbidities), and the list of medications I’m already taking, I’ve got to consider interactions and contraindications.

The most common treatment for menopause is hormone replacement therapy, or menopause hormone therapy (MHT). But is that safe for me? A 2024 study showed an increased risk of developing sarcoidosis in women who use MHT. But what if I already have sarcoidosis? Is that “risk” moot, or would MHT make my sarcoidosis worse?

Sarcoidosis affects more women than men, and most women will go through menopause at some point, but there is surprisingly little information available about how the two affect each other. Perhaps that shouldn’t be such a surprise, as there isn’t nearly enough information about either one on its own.

Until recently, menopause — and anything related to the menstrual cycle, really — was, for public discussion, a taboo topic. Thankfully, that’s beginning to change, with streaming specials and tailored weight loss programs highlighting the need to address this significant time in women’s lives.

It’s more than just the physical symptoms of menopause that can affect us. The lack of answers or direction can make us feel lost and alone, but having these important conversations with members of our community does offer some comfort.

Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.