Experiences with

Systemic mastocytosis

Subsequently, at a different hospital, they confirmed that I had the indicative genetic mutation and a bone marrow biopsy showed that I have Systemic Mastocytosis (Indolent). I also have Ehlers Danlos Syndrome hypermobility. There seems to be an association between these two conditions.

I'm Polish American though, and was diagnosed with indolent systemic mastocytosis in the states, when I was visiting my parents for the summer two years ago. I have struggled a lot with the diagnosis, and started getting symptoms shortly after, (maybe from excessive stress?).

hey. I’m nearly 2 months post laparoscopy + official diagnosis; have had the hormonal coil fitted during my op and my skin and hormones have been mental. I’ve been having random nights where I just cannot sleep, no matter how tired I am, or seemingly not very anxious, I just can’t sleep. I just lie

Hi guys! I would really appreciate some advice. I gave birth in January 2024. I know he’s my last baby so I wanted to get on a form of contraception that is long lasting that I do not have to think about. I was going back and forth between the hormonal coil and the copper coil. I had read that the copper

hey ! I had the merina coil put in during my Endo laparoscopy 6 weeks ago. I'm about to start my second period, like clockwork, since the op. The pain is so bad ! I need a little hope and reassurance that this will slowly stop ? I thought the hormonal coil was meant to stop the pain, but it’s just like

Hello ! I had my surgery + diagnosis just over two weeks ago now. I had the hormonal coil put in during my surgery as a ‘helpful measure of controlling the endo’ as obvs no cure yet. I was due on my period today, but wasn’t actually expecting it to start ? Is this normal for the hormonal coil ? I

Last weekend I finally had my laparoscopy on the NHS and received my diagnosis and treatment, I couldn’t have been happier. Please read my story here and get in touch if you want any advice: https://www.instagram.com/p/CzUKTp4tkwb/?igshid=anZzcWtpdjNuZmN3 But now I have been left feeling lost, my

I am 21 diagnosed endo laparoscopy last year & had hormonal coil which is due for removal in December (I think it was containing my pain but now it isn’t)My pain is increasing dramatically so consultant has recommended implant or injections when coil is removed. I’m wondering how I am supposed to decide

For those of you WITHOUT a confirmed diagnosis of systemic mastocytosis, please know that we hope there will be similar surveys in future to address your needs.

Hi - I'm Kay and I have indolent systemic mastocytosis. I have just been phoning round pharmacies (without success), looking for Ketotifen 1mg tablets as there seem to be supply problems yet again.

And systemic mastocytosis. For mylo i on no medication. For mastocytosis i taking 3 cetriizine .and 1 Lotradine a day. Have heard nothing from guys since 13 july was supposed to have appointmen in 5 weeks. My back aches .as my shoulder hands knee feet . Just had lung infection.

diagnosed with systemic mastocytosis and myloplastic syndrom. pluss other health conditions was wondering if I could claim pip thank you for your time

Aggressive systemic Mastocytosis. With fibrosis.. Got to see hospital in few weeks time.very little as been told to me. Red brown rash on legs..itching.

After living with UP for around 30yrs and Systemic Mastocytosis diagnosed 13yrs ago. I have had sepsis 3 times. The 1st time due to an abscess on my ovary and infection due to coil contraceptive. The 2nd time no cause was found.

I hope other people with systemic mastocytosis reply to your posting, so that you realise you are not alone. All the best.

I have some pretty horrible symptoms which make daily tasks a nightmare at times which are mostly relatable to systemic mastocytosis. Am I trying to find a link to something which just isn't true?

Does anyone here having ET and cutaneous Mastocytosis or systemic Mastocytosis? Can I know what symptoms currently you facing ? Did you have headaches almost everyday 😞.

I myself was diagnosed with Systemic Mastocytosis over 10 years ago. I am pasting below the email my daughter sent to our surgery. She asked them if she could have an ANA & ENA and tryptase blood test but they said the ANA&ENA was not needed and they were not sure about the tryptase.

Hi all. First time posting and I'm not really sure what I want to get out of this post I just feel so lost and confused. I have been living with fibromyalgia for 3 years diagnosed but probably for many years previous so chronic pain is no new thing for me. I went on the hormonal coil in January 2020

When will the mini pull become affective. I’ve been on the mini pill for about 3 1/2 months after being discharged from hospital and I’m bleeding everyday. I’ve been passing large clumps of tissue and clots the size of my hand. The pain is still there and I’m constantly exhausted as I’ve been bleeding