EM and Menstration

Hello, I wish to ask other female-bodied members if they have had unusual or worsening menstruation with EM? I started showing signs of EM around the age of 15/16 and as long as I can remember I have extremely heavy menstrual bleeding. Before I got the mirena IUD, it was so bad it sent me to the hospital several times.

Then I got the Mirena and had 5 glorious years of being period-free. However, when I moved to Texas both my EM got out of control, and the Mirena IUD (which was still the same one and was still good for another year) was no longer controlling my menstrual cycle. It was almost one right after another, just a month or two after moving here. I also started getting severe pelvic floor muscle spasms. Two new Mirenas later, both placed by a skilled OBGYN and I am still having a monthly cycle even though Mirena has the highest level of hormones of any BC option.

Has anyone else had worsening menstruation with EM? Can EM effect menstruation since it is a vascular issue? Unfortunately even though my Rheumatologist knew of EM, he couldn’t tell me if it can be why my cycle has always been so bad, and why its now so much worse. Its to the point I’m considering hysterectomy because its become a quality of life issue. But I’m wondering if just moving back to a place where my symptoms were diminished my cause my menstrual cycle to go back to normal.

Thoughts? Opinions? Similar stories?

I dont think EM has to to with heavy bleeding. i had the mirena for 4 years and never stopped my cycle, but i was desperate to try and fix my anemia and the flow was lessened. i went in april and had a uteran ablation and FINALLY stopped my cycle.
added bonus, “going under” gave me a break from EM for almost 48 hours. it’s like it put it sleep too!

Hey RWA,

Just some thoughts -

Have you had your hormones tested, maybe throughout the month if you are having periods? There is a wide range of “normal” and tests won’t show say, sensitivity to hormones so it might not be helpful but … can’t hurt to have more information?

Now that you have periods, is everyday the same in terms of the EM, or does your EM wax/wane according to your cycle?
I actually found my EM symptoms to be quite bad on high dose hormonal birth controls, and also the first day I take the placebo pill (I think the sudden drop)… when I am not on hormonal birth controls, and have a natural cycle, I notice I am worst when hormones are naturally high, and also the week before my period (when hormones are dropping). I’ve been to an obgyn to see if we could maybe exploit this observation and she suggested inducing menopause (then adding hormones back in at low dose for bone health etc … this option would be reversible, but I forgot what it was). However I decided against it because my derms / pain doc felt that while hormone fluctuation can exacerbate symptoms, vasodilation, and pain, that they were not the driver of what’s going on … and I agree. (I think the damaged nerves might be blowing up any and every signal to vasodilate.) I think my obgyn was going by the observation that a lot of women have far fewer migraines / Raynaud’s symptoms post - meno, but I don’t think it works like that for EM

In some EM paper it speculated that EM might be due to / exacerbated by defective prostaglandin metabolism. Maybe this is associated with your menstruation issues as well (abnormal prostaglandins are causing you a lot of menstrual pain / contractions?) but this is complete speculation and coming from someone with limited knowledge :stuck_out_tongue:

Good luck, and I hope things improve for you

We’ve done quite a bit of testing over the years - which is what lead me to getting the mirena in the first place to stop the unwanted excessive menstruation. Unfortunately I now live in Texas, which is basically the seventh circle of hell so I’m flaring 24/7 just due to the heat. But, perhaps, as winter sets in I can see if my periods and EM symptoms subside.

Oh, forgot to add, my symptoms have never been made better/worse because of my cycle. My EM symptoms have always been environmental, not hormonal. In fact I didn’t start having serious problems until a few months ago when I experienced my first of now many months of 115+ texas summer! So for me personally, my EM seems be be external triggered rather than internally. I’ve had pretty much every kind of diagnosis testing done within the last few months and everything was normal. It’s just really strange that both my EM starts flaring terribly and periods return even on the mirena at the same time.

Hi. I was just in Texas and was flaring miserably due to insane heat so I can imagine how tough it is to live there. Sorry to hear you’re having such a hard time. I’ve also found that my EM gets worse the 7-10 days before my period. It’s also externally triggered by heat of course but even during winter months when I might have a few days of respite the lead up to my period it always flares up badly. My RA flares up a lot in the time too. I also have severe endometriosis.

Hi, yes when I have my period the flares in my feet come back, are hotter, and my hands are hotter. It just lasts a few days (2 days before, 2 days after). The rest of the month I’m doing better due to medication, but I’m not as good as I want to be.
My doctor suggested to test my thyroid, but I can’t go to the lab because of the heat outside (Netherlands, Europe). So I have to wait for cooler weather.
Don’t we all…?