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Parents Advisory Board
bluebird bio plans to host a caregiver advisory board on November 7th in advance of the ALD Connect meeting in Waltham, MA. bluebird is looking for 6-8 caregivers of boys with ALD who have received allogeneic hematopoietic stem cell transplant (allo-HSCT) to gain insight and better understanding into
bluebird bio plans to host a caregiver advisory board on November 7th in advance of the ALD Connect meeting in Waltham, MA. bluebird is looking for 6-8 caregivers of boys with ALD who have received allogeneic hematopoietic stem cell transplant (allo-HSCT) to gain insight and better understanding into
fightald
Administrator
in
Parents of ALD Newborns
5 years ago
Does it ever get any easier?
Hi guys, So I’ve posted on here before in regards to pain, treatment and generally feeling quite down in relation to this whole endometriosis saga! I won’t get into the back story but I’ll give a little oversight in relation to recent events. I was based in London and ended up having the most amazing
Hi guys, So I’ve posted on here before in regards to pain, treatment and generally feeling quite down in relation to this whole endometriosis saga! I won’t get into the back story but I’ll give a little oversight in relation to recent events. I was based in London and ended up having the most amazing
Rachiiee
in
Endometriosis UK
5 years ago
EGG COLLECTING
Hi all, I have grade 4 very severe endometriosis. I have had multiple surgeries to remove it, including bowel, bladder and JJ stents. I was on proatap 3 injections for 7 YEARS until this January 2019 and also had mirena coil. I stopped my prostap injections, removed my coil and my periods came back
Hi all, I have grade 4 very severe endometriosis. I have had multiple surgeries to remove it, including bowel, bladder and JJ stents. I was on proatap 3 injections for 7 YEARS until this January 2019 and also had mirena coil. I stopped my prostap injections, removed my coil and my periods came back
AuntieMandy
in
Endometriosis UK
5 years ago
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Hi all.....it's been a while
Hey everyone! Brian here! To those new members whom I haven't met yet, my name is Brian and I struggle with many things stemming from depression. HI ALL! Well, I've been gone for much of this year, and a lot of members who are friendly with me have been wondering....where did he go? Well, I'm here
Hey everyone! Brian here! To those new members whom I haven't met yet, my name is Brian and I struggle with many things stemming from depression. HI ALL! Well, I've been gone for much of this year, and a lot of members who are friendly with me have been wondering....where did he go? Well, I'm here
bridder01
in
Anxiety and Depression Support
5 years ago
Does your pain make you physically sick?
Evening Ladies, I'm in absolute agony tonight all across my lower back, deep in my pelvis and its shooting down my legs. I can barely walk. The pain is making me sick and trying to keep painkillers down is a mission. I still haven't been diagnosed but end of june I had my uterus, bowel and side wall
Evening Ladies, I'm in absolute agony tonight all across my lower back, deep in my pelvis and its shooting down my legs. I can barely walk. The pain is making me sick and trying to keep painkillers down is a mission. I still haven't been diagnosed but end of june I had my uterus, bowel and side wall
Littlebirdy34
in
Endometriosis UK
5 years ago
Constant bleeding on pill?
I was instructed to go back on the pill Rigevidon about 4 months ago due to breakthrough bleeding and constant pain. The first two months I had no bleeding and minimum pain, after that the pain was back and now I’ve been bleeding every day for the last month and a half with migraines and pain. I went
I was instructed to go back on the pill Rigevidon about 4 months ago due to breakthrough bleeding and constant pain. The first two months I had no bleeding and minimum pain, after that the pain was back and now I’ve been bleeding every day for the last month and a half with migraines and pain. I went
CourtneyLeigh3
in
Endometriosis UK
5 years ago
Post-Menopausal bleeding
Hi everyone, I am new to the forum and just wondered whether anyone had similar symptoms to me and what the outcome was? I am 51 years old and had my last period 18 months ago. Prior to this I'd had irregular and heavy bleeding for 4 months. I was diagnosed with fibroids and the consultant found that
Hi everyone, I am new to the forum and just wondered whether anyone had similar symptoms to me and what the outcome was? I am 51 years old and had my last period 18 months ago. Prior to this I'd had irregular and heavy bleeding for 4 months. I was diagnosed with fibroids and the consultant found that
dawncove
in
Gynae Cancer Support
5 years ago
Advise on fibroids
Had uterus scan because of severe stabbing pains down below leading me to faint fibroids have been detected im 37 with no children but may want in the future if I meet the right partner I want to stop them growing any bigger the doctor suggested going on either combination pill ,mini pill or having
Had uterus scan because of severe stabbing pains down below leading me to faint fibroids have been detected im 37 with no children but may want in the future if I meet the right partner I want to stop them growing any bigger the doctor suggested going on either combination pill ,mini pill or having
Animallover2019
in
Endometriosis UK
5 years ago
Recovery after polyp removal and D and C?
Hi everyone, just looking for some advice please. I had a hysteroscopy last Friday and D and C where they removed a polyp also under GA. A kyleena coil was inserted also. This was agreed in advance to help with very heavy and painful periods with a lot of midcycle pelvic pain. I was expecting a diagnosis
Hi everyone, just looking for some advice please. I had a hysteroscopy last Friday and D and C where they removed a polyp also under GA. A kyleena coil was inserted also. This was agreed in advance to help with very heavy and painful periods with a lot of midcycle pelvic pain. I was expecting a diagnosis
Hidden
in
Healthy Happy Woman
5 years ago
TWW BEGINS
Yesterday was our second iui and after been delayed for 1.5 hours due to issues with other patients (please god she was ok ) we finally got our turn and the lovely Sean watermeyer was one of the most kindest men I’ve ever had the pleasure of meeting he looked after me like I was the only person who mattered
Yesterday was our second iui and after been delayed for 1.5 hours due to issues with other patients (please god she was ok ) we finally got our turn and the lovely Sean watermeyer was one of the most kindest men I’ve ever had the pleasure of meeting he looked after me like I was the only person who mattered
Noah1981
in
Fertility Network UK
5 years ago
Trying to conceive with no luck:(
Hi Everyone I'm new too this thread but I'm just looking for abit of hope really,I'm almost 24 and been off contraception for 4 years now and after a year off been off I discovered I had mild endo, this came to light in 2016 in which I had surgery to remove. a year ago me and my partner decided we wanted
Hi Everyone I'm new too this thread but I'm just looking for abit of hope really,I'm almost 24 and been off contraception for 4 years now and after a year off been off I discovered I had mild endo, this came to light in 2016 in which I had surgery to remove. a year ago me and my partner decided we wanted
Nicolebirdxx
in
Endometriosis UK
5 years ago
IUI round two fastly approaching 🤞
So ladies yesterday I seen the nurse and after one follicle in round one for round two the injection dosage was upped. I was scanned yesterday after seven days and I have 3 follicles one at 15 mm one at 12 mm and one at 10 mm back to the clinic Wednesday afternoon for a rescan and hopefully treatment
So ladies yesterday I seen the nurse and after one follicle in round one for round two the injection dosage was upped. I was scanned yesterday after seven days and I have 3 follicles one at 15 mm one at 12 mm and one at 10 mm back to the clinic Wednesday afternoon for a rescan and hopefully treatment
Noah1981
in
Fertility Network UK
5 years ago
Bleeding while on Pill every day
Hi, I had a bilateral salpinectomy in January 2018 and had the coil fitted at the same time. Mild endo was discovered during the procedure - I didn't know I had it until that point. The coil didn't work out for me and in March 2019 I had it removed and was advised to take the pill every day so as to
Hi, I had a bilateral salpinectomy in January 2018 and had the coil fitted at the same time. Mild endo was discovered during the procedure - I didn't know I had it until that point. The coil didn't work out for me and in March 2019 I had it removed and was advised to take the pill every day so as to
maggiemay39
in
Endometriosis UK
5 years ago
Please can anyone advise?
Hi, I haven't posted for a while but I'm struggling at the moment. I had a laporoscopy in March and a coil fitted. I am constantly leaking fluid through my clothes and feel unwell. I'm on metronidazole and doxycycline given from A and E. My specialist appointment is in October. Think I need a hysterectomy
Hi, I haven't posted for a while but I'm struggling at the moment. I had a laporoscopy in March and a coil fitted. I am constantly leaking fluid through my clothes and feel unwell. I'm on metronidazole and doxycycline given from A and E. My specialist appointment is in October. Think I need a hysterectomy
Ambersun1
in
Endometriosis UK
5 years ago
Today’s WSJ essay on the abject failure of medical science’s progress in dealing with this family of diseases and what must change.
An apparent extension of a highly recommended book that I had read some 8 plus years ago,,,”The Emperor of All Maladies”,,,Now a Ken Burns PBS documentary. The thrust of both books being that intensive treatment of the vast majority of cancers has for many years(4,000 in the case of “The Emperor of
An apparent extension of a highly recommended book that I had read some 8 plus years ago,,,”The Emperor of All Maladies”,,,Now a Ken Burns PBS documentary. The thrust of both books being that intensive treatment of the vast majority of cancers has for many years(4,000 in the case of “The Emperor of
Sxrxrnr1
in
Advanced Prostate Cancer
5 years ago
My coil isn’t helping :( any alternatives for endo?
I’ve had the Mirena for a 16 months and now the jaydess for three months. They both make me bloated, emotional, don’t take away my pain and give me migraines! Are there any alternatives that have worked for you ladies? X
I’ve had the Mirena for a 16 months and now the jaydess for three months. They both make me bloated, emotional, don’t take away my pain and give me migraines! Are there any alternatives that have worked for you ladies? X
milliem
in
Endometriosis UK
5 years ago
Hysterscopy - lost coil
Has anyone had a hysterscope? I have one today to try to find the coil. They said I’d be waiting months if I opted for general and this coil is causing daily agony so I need it gone ASAP. Now the scope is today and I know I won’t be able to tolerate it, I’m so scared I’m thinking of cancelling
Has anyone had a hysterscope? I have one today to try to find the coil. They said I’d be waiting months if I opted for general and this coil is causing daily agony so I need it gone ASAP. Now the scope is today and I know I won’t be able to tolerate it, I’m so scared I’m thinking of cancelling
Ash24601
in
Endometriosis UK
5 years ago
Help
Hi everyone I’m looking for some advice please as I am at my whits end 😢 I have been having Gynaecological problems since 2007. I have always had horrendously painful and heavy periods since starting age 11 (I’m now 33) over the years I have experienced numerous ovarian cysts and endometriosis.
Hi everyone I’m looking for some advice please as I am at my whits end 😢 I have been having Gynaecological problems since 2007. I have always had horrendously painful and heavy periods since starting age 11 (I’m now 33) over the years I have experienced numerous ovarian cysts and endometriosis.
Hidden
in
Endometriosis UK
5 years ago
Pain in early pregnancy
I really hope this post doesn’t upset anyone struggling to conceive. We have been Ttc for 4.5 years, had 6 cycles of iui one of which resulted in miscarriage at 6 weeks. I’ve just found out I’m pregnant naturally the month before we were supposed to start ivf! I’m 5+5 weeks today and have been getting
I really hope this post doesn’t upset anyone struggling to conceive. We have been Ttc for 4.5 years, had 6 cycles of iui one of which resulted in miscarriage at 6 weeks. I’ve just found out I’m pregnant naturally the month before we were supposed to start ivf! I’m 5+5 weeks today and have been getting
chickp
in
Endometriosis UK
5 years ago
Anyone get bladder issues?
Is bladder issues common with scleroderma? I’ve been told i have a connective tissue disease (although they since have said its likely CREST). I had the the minera coil put in to control endometriosis. I’ve had the coil in 5 months and have had issues from the very first day- more cramping, lots more
Is bladder issues common with scleroderma? I’ve been told i have a connective tissue disease (although they since have said its likely CREST). I had the the minera coil put in to control endometriosis. I’ve had the coil in 5 months and have had issues from the very first day- more cramping, lots more
flowflow
in
Scleroderma & Raynaud's UK (SRUK)
5 years ago
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