Hormones and EM

I have started compounded female hormones that are not supposed to be systemic. I have been having more flares lately, though there are many possible reasons. I wondered if anyone out there knows if hormones can cause this.

Oh wow - I’m sorry you think the non-systemic hormones are exacerbating things for you. I would be curious if you manage to find out why from your doctor? I’ve read that some vaginal creams can end up being systemic but haven’t poked around too much into that.

Eg -

I know that higher dose hormonal birth controls for me (patch or pill) exacerbate my EM, compared to lower doses (albeit those are def. systemic). I’d say it makes things 50% worse. It took me many months to figure that out … :confused:

Good luck.

The hormones are a compounded vaginal cream that is not made, as is premarin (Estrace, or Premarin) via animal urine. Those hormones were studied by the largest clinical trial on American women and ended up showing that those hormones caused bone loss, heart problems, breast cancer, memory loss, etc. Following the study 80% of American women stopped taking any hormone preparations. Integrative medicine docs, especially gynecologists are now using new compounded plant based (yam and soy) vaginal hormone creams. These preparations have some solid research behind them showing a slowing of bone loss, no cardiac effects, or memory loss, and most important, no breast cancers. Although best used when a woman goes through menopause (I am long past that ride) I decided to use the cream to see if balancing out my pituitary might also help with the EM. After 3 weeks I am flaring more and in new areas of my body. There is lots going on with me other than the hormones, so thought I would put it out to the group to see if anyone else has had any effects.

thanks for sharing

i had my marina iud removed twice thinking it was making flares worse. i’ve since had an ablation and it’s as worse as ever.

i see why you tried. and i’m so sorry it has worsened things. add that to the stress of this disease… everything is a gamble. it’s not like there is nothing to lose … i have about a 3 hour window each morning where i’m not free and clear but my symptoms don’t hinder my daily activities. i’ll be nearly useless once i lose those.

I don’t know if this is on point or not. I was diagnosed with primary EM by a hematologist in 2003, minimal treatment (aspirin or ibuprofen and sandals) and after a year or so, it went largely into remission. In Feb. of this year I joined a drug trial for a long-lasting form of Repatha (reduces cholesterol), since I cannot tolerate statins. I received one injection, and within hours, my EM went nuts. For the first 2 months, it felt like I was walking on jagged rocks. I returned to my hematologist for a regular visit (I also have a blood clotting disorder, Factor V Leiden, so I see him twice a year) in late March. He pointed out the obvious: EM had flared, almost certainly in response to that injection. Again, I’m not taking any prescription meds for this, just ibuprofen and wearing either open shoes or shoes I can easily slip off. The “walking on jagged rocks” resolved after a couple of months – a LONG couple of months. The EM has been gradually improving, and I’m hoping it will go back into its cave and hibernate. My point is, any time you start a new medication and your EM flares, suspect the medication, and report it to both the prescribing physician and the physician who treats your EM.

Thanks Sheila!!
I also have high cholesterol, am intolerant to statins, and have Factor V-Leiden, though I take a blood thinner every day, so can’t try ibuprofen. I like the image of walking on jagged rocks. This is how my feet feel most of the time. Unfortunately it is difficult to see what the culprit medication might be as I am on lots of meds, and withdrawing from opiates…I threw out the hormone question to see how other members have responded, and really appreciate your reply.

Michael Ann

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