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Endo Girls
the ongoing saga of bloody pain
No cramps for 3 years with Mirena...now doubled over in agony... 
24th-Jul-2013 11:34 am
Hi everyone - new user here. I was diagnosed with endo in about 2005-2006 (25-26 years old). I was on Ortho Cyclen, both for birth control and to shorten/lighten/make my periods regular. I went off, as an experiment, when my husband had a vasectomy. It took my period awhile to return, but things were okay for a bit. In 2008, I began having constant vague feelings of pain in my ovarian region, and had a transvaginal ultrasound taken. No significant findings, other than 2 small fibroids in my uterus.

In fall 2009, things all went downhill. I began having long, heavy periods with large clots. I had constant spotting when I wasn’t bleeding heavily. Under my doctor’s direction, I took heavy doses of Ortho Cyclen, which stopped the bleeding, then started taking the pills on a normal schedule. The bleeding didn’t take long to come back, and periods continued to be long and heavy. I had another ultrasound taken, which found endometrial hyperplasia. I took megestrol to control the bleeding, and my doctor performed an endometrial biopsy – no findings. We went ahead and did an endometrial ablation in December.

Irregular bleeding re-appeared approximately 4-5 months after the ablation. It didn’t seem to take; I had heavy flow at times, and constant spotting when not bleeding. I had the Mirena IUD inserted and it took a few months, but eventually just slowed down to spotting now and then; no real periods. This was in 2010.

I could deal with that; it’s now been about 3 years of virtually no period, just some light spotting now and then. I woke up at about 4:15 this morning in agony. I had cramps of the sort I used to get before I went on BCP the first time at age 14 because my periods were so heavy, long, and crampy. I thought maybe it was something wrong with my stomach, but I really didn’t have anything but a couple of light bowel movements; no diarrhea. I had pretty bad nausea, but no vomiting. And the kicker…my lower back was extremely painful, just as it was when I had all the endo pain in my 20s. It continued for about 3 hours. I could not lie still in bed; I was writhing around in pain. I took some Aleve and finally it abated a bit, but I can still feel it rumbling around in there, and my back is still pretty upset. This is all exacerbated by the fact that I had a really hard abdominal workout with my trainer on Monday…all muscles in that area are very tender anyway!

Here’s where I’m confused. There’s no menstrual blood. At all. Is this the end of my beautiful relationship with Mirena? Could it just be very bad stomach issues? I am almost in tears at the thought of going through this again; the year when I had the endometrial issues, the various meds, the ablation, etc. was so awful. I know many of you have gone through much worse, but I thought Mirena and I were getting along so well. Any ideas you have would be so much appreciated. <3
24th-Jul-2013 04:13 pm (UTC)
I am sorry you are going through that. Endometriosis often comes back after ablation because it just takes the top layer off, rather than excision where it cuts it out. Either way, it is dependent upon the skill of the doctor who did it and if they missed something. I don't have Mirena, but even if I'm not having a period if my body thinks I should be having one I sometimes get the pain without the bleeding. (I also have pain most days though) Fibroids can cause heavy bleeding and pain, but I haven't read about them causing pain and no bleeding.

I would call your doctor--and consider if it's time to see a specialist, or at least try to. It could be a stomach thing, but you know your body and if it feels menstrual it probably is. Also, try not to despair...it doesn't necessarily mean you are in for the same ride this time around.
24th-Jul-2013 04:39 pm (UTC)
Thanks for the kind words. It does feel menstrual to me, and you're right, I know my body best. I moved to a new city about a year ago and haven't found a GYN...things were going very well with the Mirena, so I didn't make it a priority. I lose my health insurance on September 1, so I guess I should expedite the process.
27th-Jul-2013 03:31 am (UTC)
You should get to your doctor/urgent care as soon as possible. I don't want to scare you but Mirena has the potential to perforate the uterine wall. It happened to a personal friend of mine and she had to get it surgically removed. Her symptoms were similar to yours (and she doesn't have endo), and there is a huge class-action lawsuit going on because of this. Even if it's endo flaring up it's better to know for sure for your personal safety. Please, please get checked out! Better safe than sorry.
And I'm sorry you're suffering so much. I hope you're feeling better very soon! Please keep us posted!

Edited at 2013-07-27 03:32 am (UTC)
29th-Jul-2013 11:24 pm (UTC)
I've been thinking about you and your situation. Any resolution yet?
29th-Jul-2013 01:44 am (UTC)
Have you checked your strings? I started having some similar issues when my Mirena retracted into my uterus. In your case, it might not be related to your IUD, but best to check.
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