Endo Progression while on Birth Control
I have been tentatively diagnosed with Endometriosis for about 8 years now (tentatively because I haven't done a laparoscopy for it, and thus isn't confirmed. My PA is "treating" me for it however.)
I got put on the pill (Larin FE 1.5) 8 years ago for my Endo, and recently had another routine checkup with my PA. I have been experiencing slight cramping again routinely outside of my period cycle. I was having intense bleeding and cramping at about any time of the month when I initially got prescribed the pill. The pill so far has been very effective in managing my symptoms; I have had very little cramping up until now, so it is kind of scary having the cramping return consistently outside of my period.
When I brought this up with my provider, she said it happens sometimes when someone is on the pill for a while, and that all it takes is switching over to a new pill with slightly different synthetic estrogen/progesterone substitutes. I was hesitant to do that, seeing as so far my pill has done okay and I have had lots of friends who went through months of trying pills before they finally found something that didn't have bad side effects.
I am worried that the return of the cramping is a sign that my endo is progressing, but it is so hard to tell because I only get a period maybe every 2 months now on the pill. Even then, my periods are barely any bleeding or cramping. I feel like my provider is shrugging off my concerns.
Has anyone else had their endo symptoms get worse while on the pill? Is it actually normal to have non-period cramping on birth control?
I just want to be sure I am neither being dismissive of this nor blowing it out of proportion, but it is causing some anxiety.
I am happy to hear your BC seemed to have worked for a long time! But sad to see it seems it
may not be working as well anymore. Honestly, I would suggest getting another opinion. If you could find
an endometriosis specialist, that would be a great start. And if not, just another GYN who is knowledgeable
in endometriosis. I say this because your story sounds just like mine. For years, doctors put me on BC
to mask my symptoms. It didn't help much though. No matter how many different versions I tried. I
finally went from doctor to doctor until one decided to finally do a lap to officially diagnose me and see
what else was going on. Turned out I did have endometriosis, but also had fibroids which was causing
a lot of bleeding and polyps. And all of this my birth control was not helping/controlling. I feel like with
endometriosis, there comes a time where we just need surgery. At least in my case for sure. If you are having
symptoms and not really feeling like your BC is helping, it definitely would not hurt to consider surgery.
Some people do find their BC does seem to help their symptoms more so after surgery.
I do think the use of throwing around BC pills happens too often. And isn't getting down to the actual cause
of what is going on. Sometimes I would feel the BC was doing more harm than good. But that is totally
just my opinion. You have to do what is best for you and what you feel the most comfortable doing.
If you feel this doctor is sort of shrugging things off, I would say definitely get another opinion. Maybe 2, 3, 4 however
many you need until you feel listened to and heard!
Hoping you do get helpful answers and relief soon with whatever you decide to do. Please know, we are
here for you. So reach out anytime you need us. And do keep us posted on how everything is going. Sending
you big hugs <3 -Kimberli (advocate)
