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Just wanted to share my Primary Myelofibrosis journey so far…….
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
LFCLove
in
MPN Voice
5 months ago
I was lost too..
Hello there I truly feel your pain. After I gave birth to my daughter in 2008 I started to have alot of new pain and bleeding. Was diagnosed with endometriosis. The bleeding was severe and drained me of energy. I was put on numerous contraceptive pills, implant, coil nothing seemed to work. 8 years later
Hello there I truly feel your pain. After I gave birth to my daughter in 2008 I started to have alot of new pain and bleeding. Was diagnosed with endometriosis. The bleeding was severe and drained me of energy. I was put on numerous contraceptive pills, implant, coil nothing seemed to work. 8 years later
Lolly1984
in
Endometriosis UK
1 year ago
biochemical recurrence after RP. +post leukemia
RP surgery 3/2020. Psa levels stable less than .01 for two years. 6/23 thru 12/23 levels have been .18 to .41. Complication 8/22 diagnosed with AML Leukemia. 5 rounds of chemo and a bone marrow transplant on 1/5/2023. Leukemia is now in complete remission, my blood dna is my donor’s - 40 year
RP surgery 3/2020. Psa levels stable less than .01 for two years. 6/23 thru 12/23 levels have been .18 to .41. Complication 8/22 diagnosed with AML Leukemia. 5 rounds of chemo and a bone marrow transplant on 1/5/2023. Leukemia is now in complete remission, my blood dna is my donor’s - 40 year
junkwerc
in
Prostate Cancer Network
5 months ago
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Possible endo/rejected referrals
Hi everyone. I'm new here but wondered whether anyone has had a similar experience to me. A few years ago I was on the contraceptive pill, when I noticed that my periods were getting later and later. I used to get the normal bleed during the seven day break of not taking the pill, but then I started
Hi everyone. I'm new here but wondered whether anyone has had a similar experience to me. A few years ago I was on the contraceptive pill, when I noticed that my periods were getting later and later. I used to get the normal bleed during the seven day break of not taking the pill, but then I started
CitizenErased
in
Endometriosis UK
1 year ago
Double donor advice please
Hi, FIRST TIME POSTING EEEEKK! I’d love some help :) I’m 43 , 44 next month and have had two rounds of IVF privately using donor sperm from abroad. Started at 42 - now a year down the road AMH was around 18 last year and both rounds of IVF I had 15 and 13 eggs with almost all fertilising and two
Hi, FIRST TIME POSTING EEEEKK! I’d love some help :) I’m 43 , 44 next month and have had two rounds of IVF privately using donor sperm from abroad. Started at 42 - now a year down the road AMH was around 18 last year and both rounds of IVF I had 15 and 13 eggs with almost all fertilising and two
Hidden
in
Fertility Network UK
1 year ago
Endometriosis diagnosis
Hi everybody, I have used this forum to look for information for a while but never posted on here.I have suffered with severe pain in my stomach and other symptoms for years, whilst going round and around with doctors giving me womb biopsies, smears and IBS treatments. Last October an ultrasound found
Hi everybody, I have used this forum to look for information for a while but never posted on here.I have suffered with severe pain in my stomach and other symptoms for years, whilst going round and around with doctors giving me womb biopsies, smears and IBS treatments. Last October an ultrasound found
Greenmoon27
in
Endometriosis UK
1 year ago
PCOS vs Hashimostos
Hi. I've just had the results from my Medichecks "Ultimate Performance" test and I am really very concerned. I took the blood test first thing in the morning after fasting and avoided levothyroxine for 24hrs. The excellent accompanying letter (from a female GP) strongly indicates PCOS which seems
Hi. I've just had the results from my Medichecks "Ultimate Performance" test and I am really very concerned. I took the blood test first thing in the morning after fasting and avoided levothyroxine for 24hrs. The excellent accompanying letter (from a female GP) strongly indicates PCOS which seems
Hexagon74
in
Thyroid UK
1 year ago
weight loss after coil
hi all, I am having my coil removed this week. Since having it I’ve gained around 7lbs that will not shift, even though I exercise a lot and eat very well. Could this be hormone induced? Do you think it’ll go when the coil is removed?
hi all, I am having my coil removed this week. Since having it I’ve gained around 7lbs that will not shift, even though I exercise a lot and eat very well. Could this be hormone induced? Do you think it’ll go when the coil is removed?
Zo95
in
Endometriosis UK
1 year ago
High BLood Pressure, Kidney failure, cause discovered
Super high blood pressure, average 180/110 past two years. OVer 10 different BP meds failed to reduce BP. Kidney GFR dropped from upper 50s two years ago to 22 last week in hospital. After hospital and fluids back up to 31. Kidney biopsy last November showed protein crystals in kidneys. Bone
Super high blood pressure, average 180/110 past two years. OVer 10 different BP meds failed to reduce BP. Kidney GFR dropped from upper 50s two years ago to 22 last week in hospital. After hospital and fluids back up to 31. Kidney biopsy last November showed protein crystals in kidneys. Bone
phebamom
in
High Blood Pressure Support
5 months ago
Good sats - so why so breathless?
THAT is indeed the question. Why, with my peripheral O2 levels at 94/5 %even 96% am I still fighting to breath? It goes like this. I wake short of breath. I rise and take my Oximeter (I have several; they all show the same) . My level is, say 92%. I do controlled breathing using a computer monitor
THAT is indeed the question. Why, with my peripheral O2 levels at 94/5 %even 96% am I still fighting to breath? It goes like this. I wake short of breath. I rise and take my Oximeter (I have several; they all show the same) . My level is, say 92%. I do controlled breathing using a computer monitor
Timberman
in
Lung Conditions Community Forum
6 months ago
Pcos ovaries ovulation period
Hello there. I have been diagnosed with pcos when I was about 13-14 years old. I am very soon to be 27years old. I had an ultrasound done couple of times on my ovaries and everytime they said my ovaries are perfect... I've just had my blood test done for hormones and thyroid just waiting for the results
Hello there. I have been diagnosed with pcos when I was about 13-14 years old. I am very soon to be 27years old. I had an ultrasound done couple of times on my ovaries and everytime they said my ovaries are perfect... I've just had my blood test done for hormones and thyroid just waiting for the results
Asiaxd128
in
PCOS UK (Verity)
1 year ago
5th BFN 😭😭 what next
Morning everyone. Sorry I'm not coming with better news. It's 10dp5dt and I've been spotting for 24 hours and full period arrived this morning. First response shows negative. I haven't even cried. I just expect it now. Would love some guidance on any next steps so I've set out a brief overview of my
Morning everyone. Sorry I'm not coming with better news. It's 10dp5dt and I've been spotting for 24 hours and full period arrived this morning. First response shows negative. I haven't even cried. I just expect it now. Would love some guidance on any next steps so I've set out a brief overview of my
Joeysjourney
in
Fertility Network UK
1 year ago
Time flies... when you're having babies!
Afternoon all, Apologies for the radio silence for the best part of six months. I never intended to leave it this long before updating you all but life (and a certain little miss) got in the way! Cassie Jean Jackson came kicking and screaming in to the world at 8.28 am on Monday 16th October last
Afternoon all, Apologies for the radio silence for the best part of six months. I never intended to leave it this long before updating you all but life (and a certain little miss) got in the way! Cassie Jean Jackson came kicking and screaming in to the world at 8.28 am on Monday 16th October last
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
6 months ago
One year stem cell transplant anniversary
This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things were looking a lot better both mentally and physically and my hair started its return.. My platelets were one of the slowest things to recover
This week a year ago I received my donor's stem cells. For those of you not following my posts, it was hard going in the early months but by late June things were looking a lot better both mentally and physically and my hair started its return.. My platelets were one of the slowest things to recover
Scaredy_cat
in
MPN Voice
6 months ago
endometriosis
hi everyone , I was diagnosed 1 week ago with a large endometriosis 7cmx5 cm on my right ovary . I never heard about this before , and never had any of the symptoms that a patient with endometriosis can have . of course my doctor said to have operation as is big and I do have some pain , but not
hi everyone , I was diagnosed 1 week ago with a large endometriosis 7cmx5 cm on my right ovary . I never heard about this before , and never had any of the symptoms that a patient with endometriosis can have . of course my doctor said to have operation as is big and I do have some pain , but not
micky12
in
Endometriosis UK
1 year ago
EMMA, ALICE, ERA & NKC tests- worth it?
hi everyone, so, my ‘journey’ (bleurgh!) so far: 1st IUI: chemical pregnancy 2nd IUI: Failed 3rd IUI: chemical pregnancy 1st FET: chemical pregnancy 2nd FET: failed So, my consultant wants to do the ‘quartet’ of tests on my uterine lining to see if that can give us any clues about the repeated
hi everyone, so, my ‘journey’ (bleurgh!) so far: 1st IUI: chemical pregnancy 2nd IUI: Failed 3rd IUI: chemical pregnancy 1st FET: chemical pregnancy 2nd FET: failed So, my consultant wants to do the ‘quartet’ of tests on my uterine lining to see if that can give us any clues about the repeated
FierceGrace85
in
Fertility Network UK
1 year ago
endometrioma
Hi all, I have recently been diagnosed with an Endometrioma in my left ovary & endometriosis. This has been a hard diagnosis to hear, given the side effects. I am 25 years old, without children, but I plan to have them with my partner in about 5 years. I am in severe pain during my period & often
Hi all, I have recently been diagnosed with an Endometrioma in my left ovary & endometriosis. This has been a hard diagnosis to hear, given the side effects. I am 25 years old, without children, but I plan to have them with my partner in about 5 years. I am in severe pain during my period & often
Rae248
in
Endometriosis UK
1 year ago
Mirena, cramps and spotting
Hi, I am 10 weeks post excision by lap and Mirena insertion. I have only had 2 weeks not bleeding in the 10 weeks and have daily cramping which radiates down my legs. The pain isn't constant, it comes and goes during the day. Could this still be the coil settling? Not sure how long I can take the daily
Hi, I am 10 weeks post excision by lap and Mirena insertion. I have only had 2 weeks not bleeding in the 10 weeks and have daily cramping which radiates down my legs. The pain isn't constant, it comes and goes during the day. Could this still be the coil settling? Not sure how long I can take the daily
L110
in
Endometriosis UK
1 year ago
ET and periods/menstruation
Hi - this is a question for those of you who have monthly periods, (or were still menstruating when you were diagnosed). I was diagnosed several months after going to see a doctor about spotting/dark clots up to a week before my regular period (in my late 30s)- I asked to be screened for cancer and
Hi - this is a question for those of you who have monthly periods, (or were still menstruating when you were diagnosed). I was diagnosed several months after going to see a doctor about spotting/dark clots up to a week before my regular period (in my late 30s)- I asked to be screened for cancer and
junebuggy
in
MPN Voice
1 year ago
why isn’t testing for all STD’s important before IUD insertion
I got the IUD insertion back in December 2021 I remember being tested for chlamydia etc etc. but I don’t recall them testing for all stds, why is it that it’s not important to test for all stds before insertion so you can be aware of possible issues ? My friend recently tested positive for herpes 1 and
I got the IUD insertion back in December 2021 I remember being tested for chlamydia etc etc. but I don’t recall them testing for all stds, why is it that it’s not important to test for all stds before insertion so you can be aware of possible issues ? My friend recently tested positive for herpes 1 and
L0vebug
in
BASHH
1 year ago
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