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Experiences with
Systemic mastocytosis
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First gynaecology appointment - help needed.
Hi guys, I have my first gynaecologist appointment in 2 weeks. What kind of things should I expect? What should I ask them? I’ve been suffering with pain for a long time, pain during & after sex, bleeding after too. It’s worse around my time of ovulation. I have the hormonal coil in at the moment so
Hi guys, I have my first gynaecologist appointment in 2 weeks. What kind of things should I expect? What should I ask them? I’ve been suffering with pain for a long time, pain during & after sex, bleeding after too. It’s worse around my time of ovulation. I have the hormonal coil in at the moment so
Orangecanalwalk
in
Endometriosis UK
3 years ago
Looking for suggestions for cookbooks to help with endo diet!
Hi All, I am at the point where I am awaiting laproscopy! I have plenty of medication and a hormonal coil to help me out which all seem to assist with severe pain. What I cannot get a handle on is belly bloat, pain, and pressure that leaves me feeling lethargic everyday. I was wondering if anyone has
Hi All, I am at the point where I am awaiting laproscopy! I have plenty of medication and a hormonal coil to help me out which all seem to assist with severe pain. What I cannot get a handle on is belly bloat, pain, and pressure that leaves me feeling lethargic everyday. I was wondering if anyone has
meg73
in
Endometriosis UK
3 years ago
Dienogest & Mirena
Hi ladies I'm after a bit of advice. I have stage 4 endo already had loads of surgeries ; bowel resection, uretic stents, stoma etc. The only further surgery the hospital will do is a total clearance and as I'm only 34 they won't consider that and I understand that the risk of doing so are quite high
Hi ladies I'm after a bit of advice. I have stage 4 endo already had loads of surgeries ; bowel resection, uretic stents, stoma etc. The only further surgery the hospital will do is a total clearance and as I'm only 34 they won't consider that and I understand that the risk of doing so are quite high
katie26
in
Endometriosis UK
3 years ago
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Chance of UP developing into Systemic mastocytosis?
Does anyone know what the chance of adult UP developing into the systemic type? I always presumed it was unlikely but read somewhere on this forum that most cases of adult UP develop into systemic? This is something that wasn’t really made clear at the hospital. Was more a case of keeping an eye and
Does anyone know what the chance of adult UP developing into the systemic type? I always presumed it was unlikely but read somewhere on this forum that most cases of adult UP develop into systemic? This is something that wasn’t really made clear at the hospital. Was more a case of keeping an eye and
Jazzsinger77
in
The UK Mastocytosis Support Group
4 years ago
Systemic Mastocytosis Specialists
Hi - is anyone aware of any consultants in the UK that specialize in SM and if so how to get a referral? I was diagnosed over 10 years ago after many years of trying to discover what my illness was and now see a Haematologist once a year. When I have worrying new symptoms my GP will do blood tests
Hi - is anyone aware of any consultants in the UK that specialize in SM and if so how to get a referral? I was diagnosed over 10 years ago after many years of trying to discover what my illness was and now see a Haematologist once a year. When I have worrying new symptoms my GP will do blood tests
MrsT63
in
The UK Mastocytosis Support Group
4 years ago
Any advice for dealing with extreme anxiety of having to remove and replace hormonal coil?
So I had the mirena coil fitted about 2 years ago. Although everything has been great, I had an absolutely horrific insertion (I lost consciousness on the bed and vomited afterwards from the pain). I’m normally able to brush this experience off but tonight I’ve just been filled with this horrific sense
So I had the mirena coil fitted about 2 years ago. Although everything has been great, I had an absolutely horrific insertion (I lost consciousness on the bed and vomited afterwards from the pain). I’m normally able to brush this experience off but tonight I’ve just been filled with this horrific sense
Niahn
in
Endometriosis UK
4 years ago
Copper coil removal
I had the copper coil removed in July since then my periods have been irregular and very strange. I’m 29 had this removed. during my time of having this fitted my periods where every 28-30 days lasting Around 7 days and being quite a heavy period. Since having this removed my first period was 2 weeks
I had the copper coil removed in July since then my periods have been irregular and very strange. I’m 29 had this removed. during my time of having this fitted my periods where every 28-30 days lasting Around 7 days and being quite a heavy period. Since having this removed my first period was 2 weeks
Bellakirby
in
BASHH
4 years ago
Is anyone on Imatinib for Systemic Mastocytosis and has the KITD816V mutation?
Link below says that it is to be used "for disease without the KIT[D816V] mutation". https://www.nice.org.uk/guidance/gid-ta10503/documents/final-scope https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=98850
Link below says that it is to be used "for disease without the KIT[D816V] mutation". https://www.nice.org.uk/guidance/gid-ta10503/documents/final-scope https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=98850
MastoMan
in
The UK Mastocytosis Support Group
4 years ago
Contraception & pcos
Hi, I’ve recently just been diagnosed with pcos. I am 22 years of age, i use to suffer from acne but have grown out of this. I suffer with sever hirtisum which i struggle with on a daily basis as it causes me a lot of anxiety. I am a healthy weight for my height and I have regular periods. I am looking
Hi, I’ve recently just been diagnosed with pcos. I am 22 years of age, i use to suffer from acne but have grown out of this. I suffer with sever hirtisum which i struggle with on a daily basis as it causes me a lot of anxiety. I am a healthy weight for my height and I have regular periods. I am looking
Bubblebee23
in
PCOS UK (Verity)
4 years ago
HELP! What do I do next?
I had a phone call today with my NHS consultant, I have always suffered from heavy painful periods, excessive pain and very bad hormonal acne for as long I’ve had my periods from age 11 - I am now 23. I had a diagnostic laparoscopy last August to diagnose endometriosis (they didn’t find any) and they
I had a phone call today with my NHS consultant, I have always suffered from heavy painful periods, excessive pain and very bad hormonal acne for as long I’ve had my periods from age 11 - I am now 23. I had a diagnostic laparoscopy last August to diagnose endometriosis (they didn’t find any) and they
Private12
in
Endometriosis UK
4 years ago
COIL, HORMONES... PLEASE HELP
Hi everyone, I have been advised to take my copper coil out to put the hormonal coil in to manage symptoms that look like endometriosis. However, they haven't done laparoscopy so we aren't sure yet if I do have endo. It is confusing, frustrating and overwhelming, I am not a fan of the idea of putting
Hi everyone, I have been advised to take my copper coil out to put the hormonal coil in to manage symptoms that look like endometriosis. However, they haven't done laparoscopy so we aren't sure yet if I do have endo. It is confusing, frustrating and overwhelming, I am not a fan of the idea of putting
SandraRC
in
Endometriosis UK
4 years ago
Hello :-)
I have
Systemic
Mastocytosis
so understand some of the challenges living with it. Reach out through the forum and a member or one of the other administrators will try and help. Randy 😊
I have
Systemic
Mastocytosis
so understand some of the challenges living with it. Reach out through the forum and a member or one of the other administrators will try and help. Randy 😊
Randy-UKMasto
Partner
in
The UK Mastocytosis Support Group
4 years ago
CMMLLand Systemic Mastocytosis
I have recently been diagnosed with CMML1 and if that wasn't enough,
Systemic
Mastocytosis
. Has anyone out there been diagnosed with same as I would like to talk to you
I have recently been diagnosed with CMML1 and if that wasn't enough,
Systemic
Mastocytosis
. Has anyone out there been diagnosed with same as I would like to talk to you
Hidden
in
Leukaemia Support
5 years ago
PV and Mastocytosis
Anyone with PV and
Systemic
Mastocytosis
? I was diagnosed with Mastocytosis 2013 and PV 2019
Anyone with PV and
Systemic
Mastocytosis
? I was diagnosed with Mastocytosis 2013 and PV 2019
shaks
in
MPN Voice
5 years ago
Period issues
I recently had gotten the hormonal coil, and 3 weeks later I had to get it removed as one the worst periods of my life nearly pushed it out completely, I was gonna get a new one the same day however it hurt 10x more than the first time I had it inserted. If the coil doesn't help my periods I'm running
I recently had gotten the hormonal coil, and 3 weeks later I had to get it removed as one the worst periods of my life nearly pushed it out completely, I was gonna get a new one the same day however it hurt 10x more than the first time I had it inserted. If the coil doesn't help my periods I'm running
starfoam
in
Women's Health
5 years ago
Laparoscopy and Diagnosis - any advice appreciated
I'm completely torn about getting a laparoscopy after seeing a gynaecologist for the first time yesterday. My GP has been so lovely and supportive, adamant that there is an underlying problem (potentially endo) and we will get to the bottom of it. I had an ultrasound which showed cysts on both ovaries
I'm completely torn about getting a laparoscopy after seeing a gynaecologist for the first time yesterday. My GP has been so lovely and supportive, adamant that there is an underlying problem (potentially endo) and we will get to the bottom of it. I had an ultrasound which showed cysts on both ovaries
kharv
in
Endometriosis UK
5 years ago
Hormonal coil
Hi, I had this fitted 4 weeks ago but I am still bleeding! I had a full period when I was due and then I slightly stopped bleeding but then I had light sex and it made me bleed again! Is this still settling as I read it can take up to 2 months 😬
Hi, I had this fitted 4 weeks ago but I am still bleeding! I had a full period when I was due and then I slightly stopped bleeding but then I had light sex and it made me bleed again! Is this still settling as I read it can take up to 2 months 😬
Livvy1000
in
BASHH
5 years ago
Hormonal coil fitted - still getting abdominal cramps
Hi, I had the hormonal coil fitted 8 weeks ago and still getting abdominal cramps. Is this normal? It's the first time of having a coil and I'm struggling to get into the sexual health clinic to get it checked and my own doctors just say I need to go to the sexual health clinic! Thank you.
Hi, I had the hormonal coil fitted 8 weeks ago and still getting abdominal cramps. Is this normal? It's the first time of having a coil and I'm struggling to get into the sexual health clinic to get it checked and my own doctors just say I need to go to the sexual health clinic! Thank you.
Hidden
in
BASHH
5 years ago
I need to weight on please help!!!
I’m 3 months postpartum. Iv always been slim. But Before pregnancy I was 5ft1 weighing 7st. But I was on the depo injection which kept my weight at a steady 7st. Now.. Iv had my pregnancy and it’s been 3 months since I gave birth. I’m weighing at 6st 4lbs and it keeps dropping. Iv never been a big
I’m 3 months postpartum. Iv always been slim. But Before pregnancy I was 5ft1 weighing 7st. But I was on the depo injection which kept my weight at a steady 7st. Now.. Iv had my pregnancy and it’s been 3 months since I gave birth. I’m weighing at 6st 4lbs and it keeps dropping. Iv never been a big
Claire245
in
Essential Parent Baby Care
5 years ago
Bone marrow invasion? Anyone else have.
He has
systemic
mastocytosis
and he does have anemia. However, his anemia has been stable the last 3 months with no significant changes in blood counts. I assume that number three means that his mets are stable and he just has some slight increase in the lymph nodes.
He has
systemic
mastocytosis
and he does have anemia. However, his anemia has been stable the last 3 months with no significant changes in blood counts. I assume that number three means that his mets are stable and he just has some slight increase in the lymph nodes.
BarronS
in
Advanced Prostate Cancer
5 years ago
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