I feel like this is the video that I've been looking for, I was diagnosed 4 months ago with premature ovarian insufficiency at aged 17. I cried as soon as you started talking about how it not only affects you physically but emotionally because I feel like my mental health has decreased dramatically, and knowing that I'm not the only one is just assuring. My FSH level came back as 90, and so its kind of just been really shocking. I just wanted to share my story because I haven't talked about it really and it just feels good to let others know.
Thank you for posting this. I have been having problems for about 20 years. I am 32 and just learned about this 3 weeks ago. I definitely wanted my own kids and am devastated. No one gets it, I'm glad someone does. When I know more I will definitely share my experience in s video as well. t
I want to say thank you so much for sharing. Im 27, from Canada. ...just diagnosed 4 days ago. Taking it pretty hard and it really helps to hear from other women who are going through the same thing. So thank you - take care
I was diagnosed at age 15.. I am now 19 y/o and can honestly say I'm still not over it, but I've larnt to deal with it. it was so hard to find out a such a young age, back then I was not even thinking about children. This video is amazing, there is much help and advice on POF I've found over the years and this is what I've been searching for, got the past 4 years of my life.😊
Oh my 😞 I was post menopausal at 21 doctors kept robbing me off. It's also not as rare as the make out. Thanks for making the video it's nice to know I'm not alone xx
I love this video! Like many of the ladies here I'm sure, having POF makes you feel so alone, esp. because the percentage of females that do get it is so low. So many unanswered questions come along with POF. I found out when I was 19, just started my first pack of my HRT at 24. It is so good to be able to interact with ladies that are going through the same thing I am. Every one of you are in my prayers and thoughts.
Thank you so much to everyone who has commented on this video and i am so glad this has helpful to people, i feel bad i have not been as active on this video with the comments as i intended to be, i will be posting an update video soon, nearly a year on! Everyone of you is so strong x
Hi Rebecca. I don't think I have ever had anyone narrate their story as well as you have, I related with your struggles from beginning to end. Although I was diagnosed 2007, I always blocked it out and stopped caring about my body, just thought it was a waste of time. I had no-one to share with... until today. Thank you so so much for sharing..
I'm 17, and currently going through the process of being diagnosed with premature ovarian failure, this video has helped me a lot to deal with it and understand this whole thing, thank you for sharing your story, it will help a lot of women!
I was 17 and diagnosed. I was taken to my gynecologist because I was 17 and never had my first period. I have never had a period ever without premarin and pregesterone. I'm 27.
Viveka Barnes im the same, i got diagnosed a few days ago. My mum told the dr becsuse i never got my first period (im 15) and there going to give me hrt to help me start and develop further. X
Thank you Rebecca for sharing your story. Not that you would care, but I would like to share my story with you and the commenters. Here it goes. My name is Breana and I am 23 years old from California. At the age of 17 I was diagnosed with Dermoid Ovarian Cysts and my doctor performed exploratory surgery. Both of my ovaries were 12 cm, which is more or less the size of a cantaloupe or a very large orange. During this post surgery I was at risk of entering premature menopause. Luckily my phenomenal doctor salvaged both of my ovaries. As a result, I had a normal estrogen levels and a regular menstrual cycle. Five years later, I am here watching your video to be informed of any woman's POF experience because my doctor told that I am at risk of POF all over again now at 23. He performed a pelvic exam during my bi-yearly OB GYN visit and noticed that my right ovary is protruding outward. He ordered my first of three pelvic ultra sounds during a three month a period. I am very worried because he said if my right ovary becomes too heavy he is afraid it will twist off and cause tremendous abdominal pelvic pain. If my left ovary appears to be large in the ultra sounds he will make me undergo either a partial or complete hysterectomy. He told me to be open to a hysterectomy and premature ovarian failure. After, seeing your video Rebecca I have hope that I can move forward with my life with POF. Thank you again:)
Thank you so so much for this video!! My name is Chelsea and I am from the US. I am 23 years old and I just found out a few days ago by a specialist that I have Premature Ovarian Failure... I have since grieved the loss of my fertility, and desperately searched the Internet for more information... I felt so horrible until I saw your video. I would love to have some sort of support group or conversation about this. No one in my life can relate let alone react in a sensitive way. My heart goes out to you.
Hi Chelsea, I'm in the same boat as you right now! I was just diagnosed last month and just saw the fertility doctor the other day and was only given a 5% chance of ever getting better :( If you ever want to email me my email is dleventhal124@gmail.com, I'm also on facebook- Deanne Leventhal. I'm sorry this has happened to you!!
I'm 15 and I've been diagnosed with premature ovarian failure, this is the first time I've really seen someone else effected by this so thank you so much for uploading it's been really helpful😌 I'm very scared about the ways in which the diagnosis is going effect my daily life in years to come but I'll take your advice to live in the moment!
Mel Pittman Hi!:) I was 14 when I was diagnosed, I'm nearly 18 now. Really nice to know that I'm not alone in this because I've found pof to be a really difficult thing to cope with and quite a bit strain on my life with treatments/tests etc. I hope your treatments go okay and just know that you aren't alone in this hun xxx
Thank you for posting your video. I started searching for POF videos on here as I was diagnosed with it last month at the age of 34. Although I don't want to have kids tomorrow, my partner and I had looked forward to starting a family a few years down the road. It is a difficult pill to swallow. Thank you for sharing your experience :-)
@Rebecca I'm 27 and i just got my diagnose yesterday and I'm devastated and i was TTC. Everything you said this video is true to my heart and how i feel. I'm still grieving and very heartbroken. Thank you for sharing as i know it hard for you as well.
Thank you for putting this video up, I was feeling so alone I haven't met anyone else going through it and it's nice to be able to share this experience.. I wish there was like a meeting or support group I could attend
Hi Rebecca , I am going through a premature menopause that came after a treatment of colon cancer . When I was 24 years old I was diagnosed with colon cancer and inmediately went through surgery+radiotherapy+chemoterapy. As the radiotherapy was in the area od the pelvis it directly affected my ovaries and uterus , hence the premature menopause. In my case the doctor suggested no hormone treatment at least until I get on remission which it will be next year. I have been cancer free for almost 4 years but the menopause remained. It affected every part of my life emotionally and phisically . the pain during sexual intercourse , the emotional unbalance , the stress , the infertility , the heath flashes , the lack of good sleep , etc. I tried to move on but it is more difficult than what it seems , the constant facebook posting of my friends getting pregnant gets to be really sad. Is good to have support from my family , but sometimes you need the words of someone that is going through the same situation and truly understands and relates. Thank you for posting this video , makes me feel like I am not alone in this crazy journey !
Thank you for your video. I am diagnosed with the same at age 22. Premature Ovarian Failure/Insufficiency. I was very devastated and I cried a lot. Same as well, I was advised that I can only bear a child through an egg donor. My RE wants to put me under HRT; I'm quite aware that it increases the risk of cancer. So I did my own research, POF success stories, how they got through it, etc. And one thing is common on the success stories I've read, Traditional Chinese Medicine (TCM). And they are able to conceive! NATURALLY! ON THEIR OWN. And yes, western medicine doesn't recognize these kinds of treatment, maybe because they can't accept that the human body can regenerate itself with a holistic approach. Now, I am undergoing acupuncture and Chinese medicine. So far, so good. Maybe you would want to consider it :)
jacquelin Eng yin hua i'm on TCM, acupunture, and veggie diet for 3months now and thank God! i actually got my period. though it is light, it is still a good sign, i can't even remember the last time i had a normal menstruation.
Saw this video 3 years ago when I was diagnosed. It's really nice to hear someone else with it, just thought I'd revisit it today. Hope you're okay! You helped me a lot three years ago
I'm glad i saw this video because Im 19 and I'm going thru the same exact thing you are :(. It is really hard and stressful but we can't loose hope . God bless you girl and hope one day a miracle happens
Thankyou for This video, it has helped me to explain my pof to so many. I was diagnosed 5 years ago at the age of 17. It has now started hitting me more due to many friends now having children, i hope one day it will be my turn with the help of IVF. I wish you luck with the future, and again thankyou! xxx
I was diagnosed 2 months ago and i did the surgery where they took small piece from my ovaries to confirm FOP. It was really hard because we are trying to have a family. Thank you for sharing with us cause i can totally relate. i hope someday they will find a cure. good luck to everyone
Thank you for sharing I learnt some new things from your video :) I am 19 and earlier this year was diagnosed with POF. Although I am coping well with my diagnosis and do not have too many hard feelings about it, it is sometimes hard being a student nurse and coming across patients who are going through things such as abortions. I really appreciate you talking about support networks, its good to know that I'm not alone :) All the best.
Hi there Rebecca - firstly, sorry for the slightly bizzaare username (my account is based around a cross stitch channel!) - I just came across your video and wanted to say what a great thing you have done. I think the way you presented the info and your experience in this video was really sensitive and down to earth, and you will undoubtedly have helped everybody who has seen it. To let you know a little about me, I am a 27 year old who was diagnosed with premature menopause 1.5 years ago (although they think it actually started aged 23) - like you, I found a complete lack of information available online (or anywhere!) for people going through POF, particularly those in thier 20s and have had to more or less muddle through things myself. I'm in a much better place than I was, but I will admit things are still really hard, and I still have so many questions about the future. I also completely know what you mean about the insensitive and patronising comments! What I have learnt is the best form of support has come from peer support- I don't know anyone in "real life" so to speak, which has made it hard at times, but I have found a few Facebook groups I have found particularly useful - just wanted to share with you in case they were of use - people post Qs, worries, celebrations, and reflections, and it's just a place to get some support or advice from people who are in the same boat. So there's: "Premature Ovarian Failure (POF) It's not your mother's menopause" "Premature Ovarian Failure UK" "Infertility Support UK" Being 1.5 years in, I've already experienced a lot of the issues that come up and understand that although things get better over time, they never go completely away, and it is more of an ongoing condition that you have to manage day to day (both physically and emotionally!) - I've recently decided to start my own TH-cam channel about my experiences (I just need to think of a name and plan it a bit!) and I'm also considering writing a book (although noooo idea how to get something published!) When it's up and running I'll give you a shout should you find it helpful. Thanks again so much, wishing you a happier 2016 xxx
Thank you for sharing this I'm 26 and have been going through the same thing I was just told April 8th and I have just been crying my eyes out because having kids with the man of dreams is all I ever wanted ..!!! I haven't been prescribed anything yet I have another appointment with obgyn but thank you for sharing I don't see many vids or post about it stay strong lady and good luck!
I am so sorry this has happened to you too! It definitely gets easier though, I think the worst part was just after the diagnoses because there is just so much uncertainty. Once you get on treatment things start to get better I promise xxx
Hi hun, thank you sooooo much for this video, I have put off researching this and getting to the point where I feel comfortable to talk about it, its really inspiring to see that more women in the POF community are coming forward to share. Thanks for your really frank honesty, lots of wishes and hopes for happiness and positivity!! I think I am going to start a vlog too , Hannah :)
I was diagnosed at age 15.. I am now 19 y/o and can honestly say I'm still not over it, but I've learnt to deal with it. It was so hard to find out at such a young age, back then I was not even thinking about children. This video is amazing, there is not much help and advice on POF I've found over the years and this is what I've been searching for, for the past 4 years of my life thank you😊x
Thanks for sharing! I was recently diagnosed at 25- my son is 2 and I have NO idea how we had him naturally. He is our miracle baby- but he is our one and only. POF sucks!
+Grace Carroll Hello, I understand you. I had my son at the age of 20, fraternal twins at nearly 24 (all naturally) and then at the age at nearly 25 my my period started to be irregular. My FSH levels were 49 and are in 40s still at the age of 29
Thank you for this video - makes me feel a bit less alone. I will likely get my diagnosis end of next month after another round of blood tests. I keep looking at the symptoms and just things are lining up and making sense. I’m really struggling with the thought of egg donation and seeing that child as my own as well as just grieving about it in general. I’ve experienced the insensitivity as well; people just don’t know how to react.
I had POF too. I was diagnosed at 32, but probably went through it in my late 20's. I didn't seek help for a long time--because I didn't want to complain. By the time I was tested my Estrogen was less than 10, FSH 134. This was in 1999. I am doing fine now and life is good.
Hey! Im 21 and I had some very intense cancer treatment that left me infertile and menopausal. Also use vagifam. Thanks for the video. Just wanted to say hi really x
Hello Rebecca... thank you for posting this video I have recently been diagnosed with POF i have found it really hard. I have been refered to gynaecology for HRT . I'm just really nervous about my appointment and what I will have to go through. this video has really helped me understand POF.
hi rebecca. thanks for uploading this video. Health disease and alzheimers are only likely to happen more if you don't take medication at all. The treatment of pof is a relatively newer phenomenon - I am not fully certain but think the first birth control pill came out in the 60's.. just take the meds, eat a healthy diet (make sure you get fat into your diet, most people are unaware of how important it is and new studies have praised it's importance on brain function, and ultimately whole-body function. Unlike some, I am not really upset about not being able to have kids due to my pof - i don't really want kids. However, if i had to be away from my medication for a year, then i would be concerned!
Thank you for this video!! I am definitely going to be in contact with the Daisy Network to see if they have done research on birth control (implanon specifically) and POF.. I was totally fine until I had it for 7 months and then when I got it removed, my period never returned. The doctors say there is no link. A lot of people in the support group I'm in on Facebook have had similar experiences and the doctors say the same thing. Perhaps they don't want the truth to come out because of the kickbacks they receive? I'm not on treatment yet, so thank you for going over it, I think I definitely need that pill for dryness :( Thanks for sharing your nightmare in hopes of helping others! You truly helped me!
Same here. i was on a type of combined contraception pill from around 16 years old, when i stopped taking it my period never came back. More than a coincidence i believe.
I wish I had found you earlier :( I've been ignored by the drs for years. Now I'm 32 this year, my osteoporosis is in full swing and I'm so scared for the future. My moods are constantly all over the place, I can never concentrate, the hot flashes are insane and I always feel depressed and incredibly angry. The slightest thing can set me off these days. I stopped taking Raloxifene teva (similar to HRT) and have just given up really. I know it's bad, and the future diagnosis of altzheimers and cardiovascular disease is high but it was never just about having kids. I cried when you said you felt like a freak because even now I feel the choices I've made and the people I've been with has all been because I've lost the love for myself and honestly don't know how anyone can truly want to be with me. I give up, I really do.
Marley H I am in the same boat I stopped takin the hrt it made me bleed two straight months and it was horrible and hurt so bad. I have the same mood swings too 😑. Do not feel bad you are not alone. We were made unique.
When I was in high school, my FSH levels were at 30-ish... but then fluctuated on and off through out the years, with irregular periods. I'm 28 now, and the last few years I thought I had leveled out, until a week before my wedding my periods became strange. I would bleed for one or two days.. and then a week later, bleed again or spot. This month I am pretty much skipping a period. Went into get hormones checked again and FSH is at 80!!! It is less of a blow because I had some time to think about me being infertile for so many years, but it still really sucks. No, nothing is impossible but it is very rare indeed to conceive naturally... and I've read that at a certain high level, you aren't really a good candidate for IVF either :'( Will be seeing a specialist soon.
I am going through the same thing...High FSH, Low AMH, no periods, pre-osteoperosis etc. Been married for less than 2 years. Doctors can't seem to find any reason for it. All our friends are having children and not being able to is something I think about daily. Time makes it better, I can talk about it without crying now, but there's not a day that goes by that it's not on my mind. Good luck to all of you- it would be great to keep in touch.
+Sue Me We adopted from China. She is the best! She came home to us at 1 year old, and now is 15. I encourage you to adopt if you want a baby--either domestic or international. She is the absolute light of my life.
Hiya I was diagnosed at 26... im 31 now and trust me it gets easier!! I was on evorel patches but it made me fuzzy headed... I prefer femseven patches! I've tried about 6 different HRTs now and patches are deffo the best xxx
Thanks so much for this video - I'm in the early stages of diagnosis myself, and although there is a LOT of info out there, it's very sporadic and there's not much that's comprehensive or as clear as this video. So thank you for taking the time to put this out there, it's really helped me, and good luck for your future health x
hello im actually having the hardest time with this right now i cry almost every night because i just turned 20 not even 2 moths ago. i was diagnosed with cancer (non hodgkins lymphoma )at 15 in 2012 i had chemo then i relapsed in December 2013 with cancer in my cerebal spinal fluid so i had to have more chemo, more steroid treatment ( which has affected my bones immensely) cranial radiation, full body radiation and a stem cell transplant in 2014 i had been put on estrogen this year by my endocrinologist for my bones even though i had blood clots when i was first diagnosed with cancer which had like resolved by lodging in my neck , but they came back after i was on estrogen so i needed lovenox injections then i was put on a oral blood thinner and since i had my transplant i havnt had a period and its from my cancer treatments. i have AVN (avascular necrosis) deteriation of my bones from steroids used in treatment and osteoperosis in my spine i cant extend my arms not even elbow replacement will help it just flat out sucks! :/
I had a baby a year ago have always had pain etc with no explanation and now my periods are every two weeks, headaches/migraine , bloating, constant pain, muscle pain terrible brain fog and fatigue. Is it possible to have this after having a baby or something to rule out. Because i managed to get pregnant. But I was told before I had my second that I would t get pregnant because o wasn't releasing eggs 🤔
In my experience I was getting irregular periods on the pill. I put off my annual for 4 months because of my busy schedule. I finally went and explained I had not had a period for 4 months. They did the blood tests and ultrasound to confirm it. If you are having problems with your period get a doctor who cares. I dealt with no one caring for several years and finally found a good doctor. Hope all is well!
I feel like this is the video that I've been looking for, I was diagnosed 4 months ago with premature ovarian insufficiency at aged 17. I cried as soon as you started talking about how it not only affects you physically but emotionally because I feel like my mental health has decreased dramatically, and knowing that I'm not the only one is just assuring. My FSH level came back as 90, and so its kind of just been really shocking. I just wanted to share my story because I haven't talked about it really and it just feels good to let others know.
Thank you for posting this. I have been having problems for about 20 years. I am 32 and just learned about this 3 weeks ago. I definitely wanted my own kids and am devastated. No one gets it, I'm glad someone does. When I know more I will definitely share my experience in s video as well.
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Thanks for sharing. I'm 22 and was diagnosed with POF when I was 17. Online support has been invaluable in my journey. All the best :)
Georgia Andrews Do u get ur period now?
I want to say thank you so much for sharing. Im 27, from Canada. ...just diagnosed 4 days ago. Taking it pretty hard and it really helps to hear from other women who are going through the same thing.
So thank you - take care
I was diagnosed at age 15.. I am now 19 y/o and can honestly say I'm still not over it, but I've larnt to deal with it. it was so hard to find out a such a young age, back then I was not even thinking about children. This video is amazing, there is much help and advice on POF I've found over the years and this is what I've been searching for, got the past 4 years of my life.😊
Oh my 😞 I was post menopausal at 21 doctors kept robbing me off. It's also not as rare as the make out. Thanks for making the video it's nice to know I'm not alone xx
I love this video! Like many of the ladies here I'm sure, having POF makes you feel so alone, esp. because the percentage of females that do get it is so low. So many unanswered questions come along with POF. I found out when I was 19, just started my first pack of my HRT at 24. It is so good to be able to interact with ladies that are going through the same thing I am. Every one of you are in my prayers and thoughts.
Hi I have also been diagnosed recently when I was 24, I've inboxed you :)
Thank you so much to everyone who has commented on this video and i am so glad this has helpful to people, i feel bad i have not been as active on this video with the comments as i intended to be, i will be posting an update video soon, nearly a year on! Everyone of you is so strong x
Hi Rebecca. I don't think I have ever had anyone narrate their story as well as you have, I related with your struggles from beginning to end. Although I was diagnosed 2007, I always blocked it out and stopped caring about my body, just thought it was a waste of time. I had no-one to share with... until today. Thank you so so much for sharing..
+Mary Kamau i feel the same :/
I'm 17, and currently going through the process of being diagnosed with premature ovarian failure, this video has helped me a lot to deal with it and understand this whole thing, thank you for sharing your story, it will help a lot of women!
I was 17 and diagnosed. I was taken to my gynecologist because I was 17 and never had my first period. I have never had a period ever without premarin and pregesterone. I'm 27.
Viveka Barnes im the same, i got diagnosed a few days ago. My mum told the dr becsuse i never got my first period (im 15) and there going to give me hrt to help me start and develop further. X
Thank you Rebecca for sharing your story. Not that you would care, but I would like to share my story with you and the commenters. Here it goes. My name is Breana and I am 23 years old from California. At the age of 17 I was diagnosed with Dermoid Ovarian Cysts and my doctor performed exploratory surgery. Both of my ovaries were 12 cm, which is more or less the size of a cantaloupe or a very large orange. During this post surgery I was at risk of entering premature menopause. Luckily my phenomenal doctor salvaged both of my ovaries. As a result, I had a normal estrogen levels and a regular menstrual cycle. Five years later, I am here watching your video to be informed of any woman's POF experience because my doctor told that I am at risk of POF all over again now at 23. He performed a pelvic exam during my bi-yearly OB GYN visit and noticed that my right ovary is protruding outward. He ordered my first of three pelvic ultra sounds during a three month a period. I am very worried because he said if my right ovary becomes too heavy he is afraid it will twist off and cause tremendous abdominal pelvic pain. If my left ovary appears to be large in the ultra sounds he will make me undergo either a partial or complete hysterectomy. He told me to be open to a hysterectomy and premature ovarian failure. After, seeing your video Rebecca I have hope that I can move forward with my life with POF. Thank you again:)
Thank you so so much for this video!! My name is Chelsea and I am from the US. I am 23 years old and I just found out a few days ago by a specialist that I have Premature Ovarian Failure... I have since grieved the loss of my fertility, and desperately searched the Internet for more information... I felt so horrible until I saw your video. I would love to have some sort of support group or conversation about this. No one in my life can relate let alone react in a sensitive way. My heart goes out to you.
Hi Chelsea, I'm in the same boat as you right now! I was just diagnosed last month and just saw the fertility doctor the other day and was only given a 5% chance of ever getting better :( If you ever want to email me my email is dleventhal124@gmail.com, I'm also on facebook- Deanne Leventhal. I'm sorry this has happened to you!!
I'm 15 and I've been diagnosed with premature ovarian failure, this is the first time I've really seen someone else effected by this so thank you so much for uploading it's been really helpful😌 I'm very scared about the ways in which the diagnosis is going effect my daily life in years to come but I'll take your advice to live in the moment!
Mel Pittman Hi!:) I was 14 when I was diagnosed, I'm nearly 18 now. Really nice to know that I'm not alone in this because I've found pof to be a really difficult thing to cope with and quite a bit strain on my life with treatments/tests etc. I hope your treatments go okay and just know that you aren't alone in this hun xxx
I was just diagnosed today and I am 14. Glad to know im not alone.
Thank you for sharing. I just got my diagnosis today. I'm very sad and scared but it's good to know I'm not alone.
Thank you for posting your video. I started searching for POF videos on here as I was diagnosed with it last month at the age of 34. Although I don't want to have kids tomorrow, my partner and I had looked forward to starting a family a few years down the road. It is a difficult pill to swallow. Thank you for sharing your experience :-)
@Rebecca
I'm 27 and i just got my diagnose yesterday and I'm devastated and i was TTC. Everything you said this video is true to my heart and how i feel. I'm still grieving and very heartbroken. Thank you for sharing as i know it hard for you as well.
Thank you for putting this video up, I was feeling so alone I haven't met anyone else going through it and it's nice to be able to share this experience.. I wish there was like a meeting or support group I could attend
Hi Rebecca , I am going through a premature menopause that came after a treatment of colon cancer . When I was 24 years old I was diagnosed with colon cancer and inmediately went through surgery+radiotherapy+chemoterapy. As the radiotherapy was in the area od the pelvis it directly affected my ovaries and uterus , hence the premature menopause. In my case the doctor suggested no hormone treatment at least until I get on remission which it will be next year. I have been cancer free for almost 4 years but the menopause remained. It affected every part of my life emotionally and phisically . the pain during sexual intercourse , the emotional unbalance , the stress , the infertility , the heath flashes , the lack of good sleep , etc.
I tried to move on but it is more difficult than what it seems , the constant facebook posting of my friends getting pregnant gets to be really sad.
Is good to have support from my family , but sometimes you need the words of someone that is going through the same situation and truly understands and relates.
Thank you for posting this video , makes me feel like I am not alone in this crazy journey !
Thank you for your video. I am diagnosed with the same at age 22. Premature Ovarian Failure/Insufficiency. I was very devastated and I cried a lot. Same as well, I was advised that I can only bear a child through an egg donor. My RE wants to put me under HRT; I'm quite aware that it increases the risk of cancer. So I did my own research, POF success stories, how they got through it, etc. And one thing is common on the success stories I've read, Traditional Chinese Medicine (TCM). And they are able to conceive! NATURALLY! ON THEIR OWN. And yes, western medicine doesn't recognize these kinds of treatment, maybe because they can't accept that the human body can regenerate itself with a holistic approach. Now, I am undergoing acupuncture and Chinese medicine. So far, so good. Maybe you would want to consider it :)
Thesille Santos I ve been thru tcm but doesn't work for me. Over 12y now.
jacquelin Eng yin hua i'm on TCM, acupunture, and veggie diet for 3months now and thank God! i actually got my period. though it is light, it is still a good sign, i can't even remember the last time i had a normal menstruation.
Saw this video 3 years ago when I was diagnosed. It's really nice to hear someone else with it, just thought I'd revisit it today. Hope you're okay! You helped me a lot three years ago
Fantastic video. Thank you for being so honest and giving great advice.
I'm glad i saw this video because Im 19 and I'm going thru the same exact thing you are :(. It is really hard and stressful but we can't loose hope . God bless you girl and hope one day a miracle happens
Thankyou for This video, it has helped me to explain my pof to so many. I was diagnosed 5 years ago at the age of 17. It has now started hitting me more due to many friends now having children, i hope one day it will be my turn with the help of IVF. I wish you luck with the future, and again thankyou! xxx
I was diagnosed 2 months ago and i did the surgery where they took small piece from my ovaries to confirm FOP. It was really hard because we are trying to have a family. Thank you for sharing with us cause i can totally relate. i hope someday they will find a cure. good luck to everyone
Thank you for sharing I learnt some new things from your video :) I am 19 and earlier this year was diagnosed with POF. Although I am coping well with my diagnosis and do not have too many hard feelings about it, it is sometimes hard being a student nurse and coming across patients who are going through things such as abortions. I really appreciate you talking about support networks, its good to know that I'm not alone :) All the best.
Thank you for making the video.
Please give an update!
Hi there Rebecca - firstly, sorry for the slightly bizzaare username (my account is based around a cross stitch channel!) - I just came across your video and wanted to say what a great thing you have done. I think the way you presented the info and your experience in this video was really sensitive and down to earth, and you will undoubtedly have helped everybody who has seen it. To let you know a little about me, I am a 27 year old who was diagnosed with premature menopause 1.5 years ago (although they think it actually started aged 23) - like you, I found a complete lack of information available online (or anywhere!) for people going through POF, particularly those in thier 20s and have had to more or less muddle through things myself. I'm in a much better place than I was, but I will admit things are still really hard, and I still have so many questions about the future. I also completely know what you mean about the insensitive and patronising comments!
What I have learnt is the best form of support has come from peer support- I don't know anyone in "real life" so to speak, which has made it hard at times, but I have found a few Facebook groups I have found particularly useful - just wanted to share with you in case they were of use - people post Qs, worries, celebrations, and reflections, and it's just a place to get some support or advice from people who are in the same boat. So there's:
"Premature Ovarian Failure (POF) It's not your mother's menopause"
"Premature Ovarian Failure UK"
"Infertility Support UK"
Being 1.5 years in, I've already experienced a lot of the issues that come up and understand that although things get better over time, they never go completely away, and it is more of an ongoing condition that you have to manage day to day (both physically and emotionally!) - I've recently decided to start my own TH-cam channel about my experiences (I just need to think of a name and plan it a bit!) and I'm also considering writing a book (although noooo idea how to get something published!) When it's up and running I'll give you a shout should you find it helpful.
Thanks again so much, wishing you a happier 2016 xxx
Thank you for sharing this I'm 26 and have been going through the same thing I was just told April 8th and I have just been crying my eyes out because having kids with the man of dreams is all I ever wanted ..!!! I haven't been prescribed anything yet I have another appointment with obgyn but thank you for sharing I don't see many vids or post about it stay strong lady and good luck!
I am so sorry this has happened to you too! It definitely gets easier though, I think the worst part was just after the diagnoses because there is just so much uncertainty. Once you get on treatment things start to get better I promise xxx
Hi hun, thank you sooooo much for this video, I have put off researching this and getting to the point where I feel comfortable to talk about it, its really inspiring to see that more women in the POF community are coming forward to share. Thanks for your really frank honesty, lots of wishes and hopes for happiness and positivity!! I think I am going to start a vlog too , Hannah :)
Thank you Rebecca. You have a great attitude and your video can help lots of people. The best of lucks for you, darling!
I was diagnosed at age 15.. I am now 19 y/o and can honestly say I'm still not over it, but I've learnt to deal with it. It was so hard to find out at such a young age, back then I was not even thinking about children. This video is amazing, there is not much help and advice on POF I've found over the years and this is what I've been searching for, for the past 4 years of my life thank you😊x
Thank you!!! It is so good to know I'm not alone.
Thanks for sharing! I was recently diagnosed at 25- my son is 2 and I have NO idea how we had him naturally. He is our miracle baby- but he is our one and only. POF sucks!
+Grace Carroll Hello, I understand you. I had my son at the age of 20, fraternal twins at nearly 24 (all naturally) and then at the age at nearly 25 my my period started to be irregular. My FSH levels were 49 and are in 40s still at the age of 29
Thank you for this video - makes me feel a bit less alone. I will likely get my diagnosis end of next month after another round of blood tests. I keep looking at the symptoms and just things are lining up and making sense. I’m really struggling with the thought of egg donation and seeing that child as my own as well as just grieving about it in general. I’ve experienced the insensitivity as well; people just don’t know how to react.
I had POF too. I was diagnosed at 32, but probably went through it in my late 20's. I didn't seek help for a long time--because I didn't want to complain. By the time I was tested my Estrogen was less than 10, FSH 134. This was in 1999. I am doing fine now and life is good.
are you on any med?
+Sue Me I am on 1 mg of Estrace a day/100 mgs Prometrium. I have been on these meds since my diagnosis. I will eventually wean off them. I am 50 now.
I'm 20 yo, and I can't deal with POF. it's so hard :(
Hey! Im 21 and I had some very intense cancer treatment that left me infertile and menopausal. Also use vagifam. Thanks for the video. Just wanted to say hi really x
I hope those ppl heard your words, it's really hurt and they don't understand us.
Hello Rebecca...
thank you for posting this video I have recently been diagnosed with POF i have found it really hard. I have been refered to gynaecology for HRT . I'm just really nervous about my appointment and what I will have to go through. this video has really helped me understand POF.
Have a teenage daughter and was diagnosed with POF. All genetics test came back normal. Don't know why. Keeping the FAITH.
Hi, I got diagnosed at the age of 12, im now 20 years old, great video x
meg lou did you ever have your first period? X
Thank you so much for sharing your experience! ♥
thank you for sharing. i am 31 yrs old and i have pof.
hi rebecca. thanks for uploading this video. Health disease and alzheimers are only likely to happen more if you don't take medication at all. The treatment of pof is a relatively newer phenomenon - I am not fully certain but think the first birth control pill came out in the 60's.. just take the meds, eat a healthy diet (make sure you get fat into your diet, most people are unaware of how important it is and new studies have praised it's importance on brain function, and ultimately whole-body function. Unlike some, I am not really upset about not being able to have kids due to my pof - i don't really want kids. However, if i had to be away from my medication for a year, then i would be concerned!
Thank you for this video!! I am definitely going to be in contact with the Daisy Network to see if they have done research on birth control (implanon specifically) and POF.. I was totally fine until I had it for 7 months and then when I got it removed, my period never returned. The doctors say there is no link. A lot of people in the support group I'm in on Facebook have had similar experiences and the doctors say the same thing. Perhaps they don't want the truth to come out because of the kickbacks they receive? I'm not on treatment yet, so thank you for going over it, I think I definitely need that pill for dryness :( Thanks for sharing your nightmare in hopes of helping others! You truly helped me!
Same here. i was on a type of combined contraception pill from around 16 years old, when i stopped taking it my period never came back. More than a coincidence i believe.
I wish I had found you earlier :( I've been ignored by the drs for years. Now I'm 32 this year, my osteoporosis is in full swing and I'm so scared for the future. My moods are constantly all over the place, I can never concentrate, the hot flashes are insane and I always feel depressed and incredibly angry. The slightest thing can set me off these days. I stopped taking Raloxifene teva (similar to HRT) and have just given up really. I know it's bad, and the future diagnosis of altzheimers and cardiovascular disease is high but it was never just about having kids. I cried when you said you felt like a freak because even now I feel the choices I've made and the people I've been with has all been because I've lost the love for myself and honestly don't know how anyone can truly want to be with me. I give up, I really do.
Marley H I am in the same boat I stopped takin the hrt it made me bleed two straight months and it was horrible and hurt so bad. I have the same mood swings too 😑. Do not feel bad you are not alone. We were made unique.
When I was in high school, my FSH levels were at 30-ish... but then fluctuated on and off through out the years, with irregular periods. I'm 28 now, and the last few years I thought I had leveled out, until a week before my wedding my periods became strange. I would bleed for one or two days.. and then a week later, bleed again or spot. This month I am pretty much skipping a period. Went into get hormones checked again and FSH is at 80!!! It is less of a blow because I had some time to think about me being infertile for so many years, but it still really sucks. No, nothing is impossible but it is very rare indeed to conceive naturally... and I've read that at a certain high level, you aren't really a good candidate for IVF either :'( Will be seeing a specialist soon.
I am going through the same thing...High FSH, Low AMH, no periods, pre-osteoperosis etc. Been married for less than 2 years. Doctors can't seem to find any reason for it. All our friends are having children and not being able to is something I think about daily. Time makes it better, I can talk about it without crying now, but there's not a day that goes by that it's not on my mind. Good luck to all of you- it would be great to keep in touch.
I'm not married yet but i keep thinking i won't have children i've always wanted to have a baby girl but now it's impossible
+Sue Me We adopted from China. She is the best! She came home to us at 1 year old, and now is 15. I encourage you to adopt if you want a baby--either domestic or international. She is the absolute light of my life.
+Lisa Ellis badly i can't in my country not for not married woman
but i'm glad for you it's blessing
Good luck to you, my dear. You are still so young and you never know where life will take you.
+Lisa Ellis thanx for your support
Hiya I was diagnosed at 26... im 31 now and trust me it gets easier!! I was on evorel patches but it made me fuzzy headed... I prefer femseven patches! I've tried about 6 different HRTs now and patches are deffo the best xxx
I'm on the pill and I'm
Getting bad mood Swings and hot sweats at night I'm so scared to go to the doctors 😔
Thanks so much for this video - I'm in the early stages of diagnosis myself, and although there is a LOT of info out there, it's very sporadic and there's not much that's comprehensive or as clear as this video. So thank you for taking the time to put this out there, it's really helped me, and good luck for your future health x
thanks for making this video ,
i too the same i felt very bad and suffering a lot bcoz of this pblm why does it happen to us? no words to say and i felt alone due to this!
thanks this is really helpful
Thankyou for sharing your story. you are very brave. Do you know what causes this to happen in such a young age?
hello im actually having the hardest time with this right now i cry almost every night because i just turned 20 not even 2 moths ago. i was diagnosed with cancer (non hodgkins lymphoma )at 15 in 2012 i had chemo then i relapsed in December 2013 with cancer in my cerebal spinal fluid so i had to have more chemo, more steroid treatment ( which has affected my bones immensely) cranial radiation, full body radiation and a stem cell transplant in 2014 i had been put on estrogen this year by my endocrinologist for my bones even though i had blood clots when i was first diagnosed with cancer which had like resolved by lodging in my neck , but they came back after i was on estrogen so i needed lovenox injections then i was put on a oral blood thinner and since i had my transplant i havnt had a period and its from my cancer treatments. i have AVN (avascular necrosis) deteriation of my bones from steroids used in treatment and osteoperosis in my spine i cant extend my arms not even elbow replacement will help it just flat out sucks! :/
Hugs and blessings
Thank you for making theeeese
I had a baby a year ago have always had pain etc with no explanation and now my periods are every two weeks, headaches/migraine , bloating, constant pain, muscle pain terrible brain fog and fatigue. Is it possible to have this after having a baby or something to rule out. Because i managed to get pregnant. But I was told before I had my second that I would t get pregnant because o wasn't releasing eggs 🤔
did your period stop? is that how you knew you were having this ?
In my experience I was getting irregular periods on the pill. I put off my annual for 4 months because of my busy schedule. I finally went and explained I had not had a period for 4 months. They did the blood tests and ultrasound to confirm it. If you are having problems with your period get a doctor who cares. I dealt with no one caring for several years and finally found a good doctor. Hope all is well!