I can't believe I'm giving you an update on this after just 19 DAYS

The cramps started this afternoon around 1:00.  First I took two Tylenol.  That helped for a while.  Around 3:00 the cramps returned... I took a Lortab (I know it's a degranulator, but I'm desperate here!!) along with 50mg of liquid Benadryl.  I didn't make me sleepy (or sick), but it didn't get rid of the pain either... it was like I took a sugar pill  At 6:00 I decided to try my gynecologist's advice and take a second Lortab.  Now I am in LA LA LAND  The pain is not entirely gone (!!!), but I don't care about it so much... I guess that's better than nothing.

This is so weird!  I've never been really sensitive to medications, but I've also never had a problem getting relief from the "normal" dose.  Has anyone else experienced this??

Heather

Can't rememer: Are you able to take Motrin? They work like magic for me!

I’m sorry to hear that you are in so much pain again Heather      I hope you get things figured out soon!!
Motrin is the only pain med I can take

Take Care,
Tracey

I don't know if you have heard of the Mirena IUD but a lot of women like it. My mom was having really heavy bleeding a awful cramps, I was with her one time and she was in so much pain she was shaking. I felt so bad. She saw a few doctors and they said hysterectomy was the only option and the best one. About a week before the surgery she got another opinion and the doctor suggested the Mirena and she loves it! It stopped her bleeding and she rarely gets cramps.
Now I got the Mirena and I am one of the few who didn't care for it. I didn't have a period on it for like a year which was nice, but they say it's non systemic (the hormones) but I beg to differ. I had it pulled after 18 months. But everyone else I met loves it. If you don't want one with hormones they have a copper one (IUD).
I wish you could take motrin. It's the only think that helps me. Oh I also use a heat pac that wraps around my lower waist, that helps major too.
Melissa

Well this isn't a pleasant situation. I heard of endometrial ablation but that sounds worse than surgery. What do the docs say about your hormone levels. Are you estrogen dominant? I am sooooo sorry you have to deal with all this. Isn't being a woman wonderful!
Melissa

I can't tell you when or who said this for I can't remember, but I do remember another patient saying that her doctors suggested ablation and that she spoke with Dr. Castells about this.  

What the out come was I also don't remember!   However, Heather, this is one for an authority for although you are right, that the mast cells gather to the site of an incision, things do indeed settle back down again.  They are only worked up for a while, it doesn't necessarily mean that they are constantly kept in aggitation.  They will settle.  

Heather, like it or not there are need for surgeries and surgical procedures with us.  I seem to be the queen of some of these and yet I can assure you that although the mast cells are called into action, this doesn't mean that they will permenantly be kept in action.  Once the healing process is over, the site settles down again.  The body seeks equilibrium even with a mast cell disorder on hand.  So I don't think that this is a major reason for not doing either the ablation or the hysterectomy if it came to that.  And, there are those cases where the hysterectomy has actually brought and improvement to the patients due to the removal of the hormone going up and down.  The uterus releases hormones as well as the ovaries and this could very well give you improvement.  

However this is not the major concern here, Heather.  It's the pain and the risk of hemorrhage which are the issues.  If you are finished with children, then the need for your uterine function is over.  If your uterus poses a threat to your health and life, then you must consider what to do about this.  I had fibroids and they were growing way, way too quickly and they were presenting a threat of hemorrhage and I had no other options for I have breast cancer in the family.  I had to remove my uterus, period!  I would not have any more difficulty in making that decision today than I did with my open heart surgery last June!  My kids are still too young and NEED ME HEALTHY AND PRESENT and they are my priority over any physical part on my body!  I don't care what surgery in the future I may have to face, my children's needs come first!  

So, I think that if your doctors are not hearing you that it's time to go back to the doctor hunt and begin researching your options and take some positive steps to resolving this situation.  Your having to take such strong meds isn't good for you nor for them and this too is dangerous.  Your children, especially are little and they don't need a doped up Mommy around the house when she's got to be supervising them.  Something serious could happen while you're in that state and then what happens!  kids get into mischief, especially boys, and they need an active and healthy mother to keep them in line!  I've got 2 very well behaved boys, but boys are dangerous people since they don't seem to have the same fear of harm that girls do and so you can't trust them when you're laid out on the couch and loopy!  They figure that out quickly enough and that's when trouble hits.  So, Heather, back to the streets, finding more doctors and with them some answers!!

Hugs!

Lisa

Did you have heavy bleeding like this before you had your Mirena? I only ask because when I got mine I had 2 periods then after that none for a year and then periods came back and they were so painful, more painful than before I had the IUD. This was right around the time my joint pain and hives were bad, and I thought maybe my body hates this foreign object in my body and is trying to reject it. I also thought maybe because I have some autoimmune issues my body is rejecting it. I had it pulled......I still have those symptoms but I was just curious if the heavy bleeding started after the Mirena. Sounds like it's hereditary in your case though. I wish you could take ibuprofen, it really helps my cramps. Hang in there! Thoughts and prayers that you can get this under control so you don't have to be in pain anymore. Hugs!
Melissa

Hi Melissa,

I actually don't have heavy bleeding right now (although I did in my 20s)... it's just abnormal bleeding.  I had the Mirena put in when my son was six weeks old.  That was in April 2008.  After four MONTHS of nearly continuous bleeding and abdominal pain I put myself on the gluten-free diet (I also went back to the OB/GYN practice where I had the Mirena put in, but that's another story).  Within 48 hours I knew the gluten-free diet was just what I needed.  The bleeding started decreasing and by 2009 the Mirena was working pretty well.  Now when I bleed it's just spotting for two or three days.  Unfortunately, I still bleed very, very easily.  Do you know anyone else who gets a period from traveling on an airplane?  It doesn't matter if I just bled a week ago... I'll bleed again.

I'm not sure if my problem with gluten is truly celiac disease (long story).  I've been on the gluten-free diet faithfully since August 2008.  For the first time in YEARS I no longer have steatorrhea!  It's one of those symptoms that I thought was just "normal for me" until it went away.  So... I suspect that my vitamin K is fine by now.  I eat leafy green vegetables on a regular basis.

Like you, I've also thought that maybe my body was rejecting the IUD.  But... most of my autoimmune symptoms have decreased significantly.  Why would my joint pain and fatigue go away (!!!), and yet I still have these problems with cramps and abnormal bleeding?  This is the mystery I'm trying to solve.  Good thoughts though  It could very well turn out to be another autoimmune problem.

Heather