Hi laura ,

I am so sorry you have been so poorly ;-( .

I am glad you are here

Bleeding can be mast cell related but you need to be worked up for blood disorders first . have you had this ?
You say you are on lots of medications , what are you on ?

I am sorry you are needing TPN ( total perentral nutrition ) via a PIC line ( long line in arm , from crease in arm , up to shoulder into a big vessel . Have the doctors found problems in your bowel ? I am however glad you are getting nutrition .

I hope your doctors are keeping an eye on your blood levels with heavy bleeding . I am so sorry you had a perforation during your day surgery.

I can't answer your other questions . What do you mean by sexual disorders ? Do you mean disorders of the vagina , cervix, womb , tubes and overies ?? Or problems due to sexual contact ?

many hugs
Josie

Hi Heather and Josie,
Thanks for your responses. Sorry if not enough details, but I was trying not to make my initial post too long.  I was diagnosed with mast cell activation disorder almost 3 years ago. 24  hour urine, skin and tryptase tests confirmed diagnosis. Dr. Greenberger is my doctor, and he  is absolutely fabulous;  calling or emailing me daily, throughout this massive flare-up, to check in and/or modify medications.  

Yesterday, I went back to the GYN and had a pelvic ultrasound. This test confirmed the presence of more fibroids, some are pressing into the lining of my uterus, which is what keeps causing such heavy bleeding. I had oblation surgery in January that has 90% success rate for most people, but it failed because my uterus got perforated and more fibroids grew back.  During the recovery from this relatively minor surgery, my mast cells went crazy, effecting mostly my stomach and esophagus. I am working hard to eat and hold down foods so that I can get off the TPN soon.

The next treatment option for this excessive uterine bleeding is lupron shots or birth control pills to stop or at least control it until I am strong enough to have my uterus removed.  Hopefully, another surgery will not make mast cell disorder activate again, once I finally get it calmed down and I get strong enough to tolerate surgery. The sexual disorders that I was asking about was because in some previous posts 9on new and old website?) there were references to a folder called sexual disorders.  My female issues are mainly with uterine fibroids, but I was diagnosed with vulvar vestibulitis and fibromyalgia many years ago, which I was fascinated to learn both often correlate with mast cell issues.

Thanks again for your response and any advice that you or others have pertining to these matters are welcomed...
Laura

Thanks Ramona,
Lupron info. was very helpful.  I am scared that some of the side effects (joint pain, night sweats, excessive bleeding, osteoporosis, weight gain, and mental fog) are ones that I already have that could be worsened. My bleeding is now being controlled by birth control pills, and I think I will try to stay on this as long as I can before having surgery. Hopefully I will be strong enough from current MCAD outbreak to tolerate surgery soon.

Thanks again!
Laura