Hello la woman,

Did your doctor recommend a hysterectomy?

I had one in my late 30's and it was no picnic, though I will admit I really liked not having to worry about the cycle anymore  lol

I am sure you will get some great advice and lots of support here.

I can help with the support for now as I am quite the newbie myself.

Take very good care,
Maureen

Welcome to the group, LA Woman!  I hope we can help you!

I'm sorry you are going through such difficulties.  I hope you can get some help from us here.  Your situation is pretty uncommon though.  Yes, your hormones can indeed create confusion and difficulties, but I honestly think you need to speak with an authority about this prior to just going down this road.  I would suggest that you write to Dr. Mariana Castells and ask her for a phone consult.  She will speak with patients over the phone even though they are not hers.   I would also think that your gyno or masto doctor would be able to contact her for you.   You say you are in LA, have you considered going to see Dr. Jason Gotlieb at Stanford?   He is the foremost authority on mastocytosis on the West Coast and he would most definitely be able to help your doctor and even connect with Dr. Castells if necessary.   He fully understands the interaction of the hormones with masto activity and he may be able to recommend other means of dealing with this before going all the way to a hysterectomy.  I know that when patients who are dealing with ovarian cancer and other cancer related treatments they will receive a shot in their abdomen which will stop ovulation and thus menstration and this may be a preferred option.   There is also ablation which can be done to the lining of the uterus to stop the bleeding process and this may help to reduce some of the hormone activity.  So there are more options out there that you may want to consider.    

As to whether life will be easier for you on the other side of the knife, this is not an easy thing to answer.  Some ICU patients have gone that route and it didn't help them, others it has.   Only time will tell, I'm afraid.  Each case is a case of its own.

Hugs!

Lisa

Hi Joan, you say you took estrogen replacement for 10 years...are you off them now? and if so for how long? thanx!

Hi, la woman and welcome to the board! I have to agree with Lisa. Situations with hormones are so individual that only you can say what is worse--living with your uterus and hormones acting up or opting for surgery, knowing that sometimes mast cells cause problems in areas that were treated for other things.

I can say that I had some nasty problems with heavy bleeding, hypoglycemia and anxiety when I still had my cycle. Once it stopped I did so  much better in feeling stronger, but that is the same time my SM went  active and I have no idea if it was coincidence or not.

I will say that you definitely need some H1 and 2 antihistamines and Zantac, You will probably need something for anxiety (most of us have Xanax or Ativan). You might need a proton pump inhibitor if your have GERD and you might need a mast cell stabilizer --most of us do.

Your mast cells are called the gateway of the immune system, and once it goes wrong, you need to keep an eye open for other possible auto immune problems. Your cold hands--do they swell, turn colors and burn, then go back to normal?? I do that to-- it might be a disorder called Reynauds Syndrome--talk to your DR about all of this ok??

We are here for you and you are gonna be fine now
hugs,
Ramona

Are you taking any antihistamines? Lisa and Ramona are saying that by taking antihistamines, you may eliminate the symptoms you have written about. Doctors who don't know enough try us on anti-anxiety meds, but the real fix is not those. It is the antihistamines like zyrtec, allegra, and zantac.