I’m very sorry for what happened to you. I also have pelvic pain, my docs are not sure weather is vulvodynia, vestibulodinia or some other thing like that. And I had to face a lot of complications in recognizing this thing as well, I relate to what you are saying 
also I read that you had trouble singing and I think it can kinda be my case too, even tho I’m not super sure but I have pain in my throat too from singing sometimes, and weird feelings, not that I sing that much anymore. Did you do something to look into that? Like some exams or something?
Sending you love
Hi, I asked this as my breathing actually shows almost no improvement on inhalers. Everytime I get sick flu etc the asthma shows up, takes months to settle down.
I saw a heart guy once he said my hearts jumps 20 beats per minute when standing but put it down to deconditioning.
MCAS really does seem to fit.
I get the feeling we played with vitamin A and now equilibrium s gone.
A cardiologist tested me for POTS and an Allergist/Internist who specializes in MCAS diagnosed me with Mast Cell. What are you symptoms? A lot of doctors don’t know how to look for these things - the tests are far from perfect
2 Likes
Hi Sara,
I’m so sorry to hear about your pelvic pain and vocal pain. I have seen a number of doctors for my voice, including a specialist who works with Grammy Foundation. She is the one who finally suggested maybe it was related to asthma. Do you cough?
1 Like
You could absolutely have POTS/MCAS. I don’t know where you’re located, but you should definitely see someone who specializes in each condition (MCAS is what causes the POTS). I’m happy to help you locate doctors. I seriously can’t bare to see people suffering like this, and doctors acting like we’re crazy!
Thanks. I do have elevated ige antibodies, and have been to an allergist myself testing positive for all known airborne allergens (ive known of allergies since I was young though). I also have tested positive twice for eosinophilic esophagitis. Was there any additional tests that lead to being diagnosed with MCAS?
I had the POTS test because I have had periods of dizziness, lightheadedness, head pressure, headaches.
Oof, I’m sorry, that sounds rough! You do sound like a good candidate for MCAS/POTS. The MCAS tests look for a rise in urinary n-methyl histamine, prostaglandin-D2 (or its metabolite 11β-prostaglandin), and tryptase. Be prepared though, you can test negative and still have MCAS! But it’s a good place to start.
1 Like
Thanks for your response, another thing I have found in myself is I can gain weight exceptionally fast. I realise this sounds common but its something I find more extreme in myself. Do you experience this as well?
Yea I do, particularly when I do specific things but I didn’t noticed it until last summer I think I’m not sure about it cause I don’t do that that often now, I will try to look into that better. Are you able to sing now?
Sorry for the delayed response. Naturally, I am very slim and have a very fast metabolism. However, at my worst, I was definitely at my heaviest. I was very bloated and swollen.
No, not able to sing yet. Still fighting asthma and MCAS, but I’ll let you know if anything helps 
1 Like
Thank you so much!
I’m staring in genuary pelvic floor therapy for the pelvic pain, not sure it can be all manged by this but I’ll report to you too if it’s helpful.
I really hope pelvic floor therapy helps you!!!
Hi everyone,
I just wanted to post something fascinating that I’ve been coming across as I try to make sense of the connections between my symptoms. The first article is research conducted on mice in which Accutane was intentionally used to cause an increase in Mast cells for the purpose of wound healing. Mast cell activation is the cause of MCAS/MCAS. The second study articulates that the reason photosensitivity is a side-effect of Accutane is related to “degranulation” of Mast cells, which is basically a way in which they become destablized/activated.
Please let me know if you are female and are "double jointed’, prone to (joint dislocation), have pelvic, sacral or urinary pain, and/or believe you developed “allergies” or food sensitivities after using Accutane. It would be my honor to help you get diagnosed with MCAS and/or EDS sooner than the 14 years it took me.
STUDIES
https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1468-3083.1993.tb00006.x
Are you experiencing increased wound healing now?
Hi Calcified,
I don’t have any special powers with wound-healing, if that’s what you’re asking lol
The idea of the study is that any trauma to the body triggers the release of certain cells to repair and protect the body. The researchers discovered that giving the rats Accutane made their wounds heal faster by activating a type of response cell called a Mast cell. The problem is, if you have the genetic propensity for conditions like MCAS or Mastocytocis, you’re going to have a really big problem taking any medications that “degranulate” or activate Mast cells intentionally, because you either have two many Mast cells or you have unstable Mast cells.
The reason I am interested in this study is because I have recently been diagnosed with MCAS, and I am very very clear that I never had “allergies” or inflammation prior to Accutane. I am beginning to understand that my Accutane treatment may have been my first MCAS “flare up”.
Only asked as people have complained of slow wound healing now.
Oh interesting. Did not know that!
I too believe I have MCAS and POTS and even EDS. This all started after coming off SSRI and taking Sam-e. The Sam-e is what really did it but I believe the SSRI laid the groundwork. I notice improvement when on antihistamine and mast cell stabilizers. Licorice Root really helps my sexual issues and I just learned that its a mast cell stabilizer and helps nerve function. Going to start working with a MCAS specialist soon and will report anything useful back. But this explains my symptoms really well.
Oh man.
I have always been living with cats until one day i developed allergy to them.
I have never consider accutane to be the cause, because i got PFS from finasteride many years after that. But, i just realize that i got cat allegy more or less when i was on accutane or after cessation. Very interesting.