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Excessive uterine bleeding (Read 5116 times)
Doozlygirl
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Excessive uterine bleeding
07/12/12 at 19:11:31
 
I am so excited, I just have to share this with you all.  Bear with me as I give some details.  

I have been struggling on and off with excesive uterine bleeding, or should I say hemorrhaging, which can happen with or without cramping.  I have had fibroid surgery twice, most recently 2 years ago, but kept bleeding.  

In my pre mast cell days, I would take prescription Naproxen, which were blue or green liquid gel Advil, which I tolerated better than the brown tablets, but looking back all lead to other symptoms.  I haven't tried any of those OTC meds since learning about mast cell disorders.  I now know I anaphylax from yellow #5 dye, and trigger from other colored dyes and that those OTC meds degranulate.  

I have taken asprin on occasion for my unrelenting headaches but get gut rot, so take it 30 minutes after a H1/H2 without incident, since I can't find an enteric coated asprin without yellow dye, I take the basic aspirin, but only when I have one of those horrible headaches.      

I have issues with OH and low blood volume on a good day, so can't stand to lose blood.  I've taken Z/Z, which has never decreased my uterine bleeding.  So, I went out on a limb today and took a dye free Benedryl today with amazing results!   My bleeding slowed down considerably.  We'll see what happens when the Benedryl wears off, but I am grateful for learning this today.  

I can't believe I am actually surprised by all this.  I just tested the premise:  Stop the symptoms by stopping the reaction.  Benedryl stopped/slowed the prostaglandin cascade.  

On a side note:   All of my testing came back in range when I saw Dr Afrin in May.  I had been taking Benedryl for several days due to massive leg swelling, (which always happens when I fly).  I have a follow up appointment with Dr Afrin in 10 days, so we are going to retest the mediators.  We are driving, so there is a good chance my legs won't swell like when I fly.  If all goes well, I am going to try NOT to use Benedryl the day of my collection/lab draw unless my reactions get away from me.  Praying that my H1/H2/singulair will sustain any reactions.  I wonder if Benedryl at all impacted my prostaglandin blood and levels during my first round of testing??????  

I know it is advisable to continue taking meds during testing, but since Benedryl is my core emergency med and since I don't take it on a regular basis, I will only take it that day if I have a serious reaction.  

Does anyone have any personal experiences related to Benedryl and mediator lab levels?  Anyone know the half-life of Bendryl in the body?   Any thoughts?  

I've had physicians advise me to have a hysterectomy and I fought it, always choosing an alternative.  I am making no judgements about others who have had surgery, but wouldn't it be nice to have one more alternative to a hysterectomy?  Imagine the day when a OB/GYN will advise taking  Benedryl to slow the dysfunctional uterine bleeding before they advise synthetic birth control pills, uterine ablation or hysterectomy.    Smiley  

I look forward to any toughts.
Lyn            
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Joan
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Re: Excessive uterine bleeding
Reply #1 - 07/12/12 at 20:04:40
 
The Benadryl might have reduced heparin,too.  Glad you're doing better!

Do you wear compression panty hose when you fly?  I have to wear 30/40 or higher, and it keeps me from swelling.  HATE them, but it's worthwhile wearing them, as they keep away blood clots, too.
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Doozlygirl
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Re: Excessive uterine bleeding
Reply #2 - 07/12/12 at 21:17:24
 
Joan,
That was the only time I have flown since my autonomic and now mast cell diagnosis.  I don't have prescribed compression hose, but did wear spanx from chest to toes, minus a few inches on my thigh.  My swelling occurs the following day, which makes sense since I am more of a leaker.  

And oh, yeah, heparin.......

Have you heard of anyone with elevated lab values when off Benedryl?  

Thanks, Lyn
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KatFromMD
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Re: Excessive uterine bleeding
Reply #3 - 07/13/12 at 05:35:38
 
Lyn - is this menstrual bleeding or something else?  Seems like if you're having bleeding other than menstrual flow, it REALLY needs to be investigated, as it could be something serious.

If it is heavy menstrual flow, I can strongly recommend endometrial ablation.  I had Novasure done 2.5 years ago, and it did wonders for me. No more blood loss, and little to no monthly pain/diarrhea (which used to wipe me out for over a week).  I agree a hysterectomy seems extreme; this was a good alternative for me.  (It still means you can't have any kids, though....)

As for interfering with testing, my understanding of how the H1s and H2s work is that they're basically addressing the after-affects of degranulation (treating the symptoms, not the cause), so you should see the mediators in testing even when taking them.  Of course, I test pretty much normal for everything, so I would be interested in knowing if stopping my antihistamines might possibly give a different result.
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Doozlygirl
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Re: Excessive uterine bleeding
Reply #4 - 07/13/12 at 09:40:43
 
Kat,
My bleeding is considered menstrual bleeding and it has been thoroughly worked up several times, and twice, they found fibroids, so I had a myomectomy the first time and then embolization, but resumed bleeding within a month or two.  After working through dozens of birth control pills, and other meds, found prescribed bio identical progesterone cream which once I got on the right dose, helped alot.  When I first learned about mast cell issues, I read that progesterone can trigger, so I went off progesterone cream and it was disasterous for me. so I went back on, knowing it works for me.  

But I still get episodic excessive bleeding that corresponds to my cycle and sometimes it continues beyond my normal cycle days.  I am glad to hear ablation was a good option for you.  My other symptoms seem to be pointing to PGD and heparin as key mediators for me, with likely others.  

I am not at all suggesting that an H1/H2 combination, like Z/Z may impact mediator testing, but wonder if Benedryl may be impacting mine.  I have read others state that off Benedryl, their testing came back positive.  Not sure of the correlation, but just thinking outloud and seeing if others have had those same thoughts.  My experience yesterday certainly added to this line of thining.  

Thanks for your response,  
Lyn
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Doozlygirl
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Re: Excessive uterine bleeding
Reply #5 - 07/15/12 at 13:00:25
 
That one dose of Benedryl is holding strong, as my period has been very light for the past 2 days, which reaffirms my theory that Benedryl may be a solid option for those of us with excessive menstral bleeding.  If only I had known this earlier...

Thanks for the responses,
Lyn
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Doozlygirl
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Re: Excessive uterine bleeding
Reply #6 - 07/24/12 at 19:29:03
 
Update:  Saw Dr Afrin yesterday.  He feels that heparin was likely involved with my bleeding.  He hadn't heard of antihistamines  stopping bleeding, but at the same time wasn't surprised to hear Benedryl stopped my bleeding.  

I did stop Benedryl for second round of testing, as well as avoided all NSAIDS.  We'll see if any of these turns up positive.
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