My story is the reverse of what many people here are commenting. I was put in for a hysterectomy at 55 despite being completely asymptomatic with two fibroids and two simple cysts. I went through a whole range of tests - all of which were terrifying and invasive. I felt like I was thrown on the menopause "oh she doesn't need her reproductive organs anymore" scrapheap. I went to two private doctors for 2nd and 3rd opinions and neither of them thought hysterectomy was necessary so I self monitored for several years by going for scans privately, and all of the above had shrunk (because I came off HRT which had been fuelling the growth of cysts and fibroids). Finally went to another NHS doctor three years later, had more tests - just to see and he basically said to me something along the lines of "you don't need a hysterectomy, many doctors are too quick to suggest it but what they don't consider is bladder prolapses and incontinence issues 10 years down the line." He then said "Go away and have a nice life, you don't need to worry about this anymore". I could have kissed him. I knew a hysterectomy wasn't right as the original consultant said "unfortunately the NHS is simply not up to giving you an MRI scan once a year to monitor you, so you'll have a hysterectomy". It was like I had no choice. I was put through unnecessary anxiety and misery let alone having a womb lining biopsy (because it was more than four mms thick even though I was on HRT at the time), an MRI, cancer blood tests including a missed call from the oncology department on Christmas eve (just to ask me to come in for a test) and 10 internals in two years. I am now sick to death of having probes/speculums etc pushed up me. It's barbaric and degrading when I had, and still have, no symptoms. Men don't get endless probing up their delicate regions! I still feel extremely angry about it - that I was going to be put through major abdominal surgery whilst being totally healthy with a low risk of cancer - why do that? I felt like a piece of meat to be carved up. Sorry for the rant.
I wish i found this before my hysterectomy. Thank you for being so frank. I had to beg for a hysterectomy i had 2 years of such heavy bleeding at age 50. I was told i should be going into menopause but i couldnt live with the heavy bleeding from fibroids, unsuccessful treatment with decapeptyl and a fibroid resection. It has been the best decision ever, i couldnt leave the house for about 6 months. I felt this was a last resort and it was hard post op, but i have my life back. I'm 4 months post op and feeling so much better. It needs way more discussion and how it impacts women lives. I overall have fou d this a positive experience.
Thank you for this interview and honesty. I’m 7 months post total abdominal hysterectomy at age 59. It has been, and still is the hardest thing I’ve gone through. I’m still struggling with pain, tiredness and depression. My husband was incredibly supportive and helpful during recovery but it’s a lonely journey as each woman will experience it differently. I’ve got an appointment with a pelvic floor therapist soon in the hopes I can will find a way to finally be pain free.
Thank you for this podcast. I’m a month post total hysterectomy and definitely feel that I’ve been left to it. My Surgeon also said the ‘Let’s see how you get on.’ sentence. I’m not getting on at all! I’m concerned that they won’t listen to my concerns, and just dismiss me as yet another hysterical woman.
Thanks for this video, it’s very helpful. I had been considering a hysterectomy because of my extreme progesterone intolerance. I wish to continue to with oestradiol transdermally for many reasons. But you have both made me think again! Most websites I’ve read describing recovery from a vaginal hysterectomy make it sound like a piece of cake! Clearly it is not for many women!
This is a very helpful discussion, I had TAH and ovaries removed almost 3 months ago…….it is a big recovery physically and I would consider myself fit and slim before hand and I’m 42…..Also emotionally it’s a big thing to go through. The positive side is that I have my life back after anaemia and a huge fibroid. Surgical menopause is hard and obvs so much worse for a woman who cannot have HRT. One annoying thing is everyone assumes I am fully recovered now ! But it is a big change and I get fatigue very easily.
I had a hysterectomy in April for suspected Adenomyosis and endometriosis.......age 47 and i really regret it 😢 I now feel worse hormones all over the place the nhs haven't been good at all in post op care Its severely affected my mental and physical health and wellbeing And guess what .......pathology confirmed NO ADENOMYOSIS 😮😮
It's a conveyer belt,like you l still have vivid memories it was brutal and took me almost a year and a half to sort of feel myself again.Wishing you all the best.
What upsets me is all the perimenopausal women being denied or scared off the pill to treat their heavy bleeding because of the 2 or 3 in 10,000 extra cases of blood clots, who end up having avoidable hysterectomies - like major surgery doesn't carry much higher risks! Some of them are so anaemic they are having blood transfusions.
Reading these comments and listing to this podcast, I am now totally freaked out about my upcoming hysterectomy for severe symptoms of adenomyosis that I have been experiencing for the past 5 years. I tried the Mirena, I tried the arm implant, I take 300mg progesterone daily and nothing has helped, I have toughed it out for a long time and hoped to make it to menopause, but I am still peri. I am 48. The hospital is keeping me for one only night after, then home to my husband who had ankle surgery and is non-weight bearing for another month. I am seriously questioning my decision. 😥
If you are not sure about it, it is better to acknowledge how you feel and weigh up the alternatives. Your body is for you to make decisions about, nobody else and if it doesn't feel "right" to you, there is an important reason for it. That you feel scared because your husband will not be in the best place to help you if anything concerning happens is also a valid consideration. You're not stupid for feeling the way you do. I have been referred to the hospital to discuss treatment for a fibroid due to heavy periods but I have already said I do not want a hysterectomy due to all of this as I am now 50, still getting periods, do not have a partner to help me afterwards, noticed that when I eat alter my diet to eating more vegetables and less sugary foods that my periods are not so heavy. I am also looking for work as I am currently unemployed, so if I find work, then an upcoming hysterectomy will get in the way of keeping a new job and being the reason for so many other worries, as I need to support myself financially. I have been told there are alternatives now to treating fibroids so I have agreed to the hospital referral but will be making it clear how I feel if they try to push a hysterectomy on me.
I have abnormal uterine bleeding and have been reading about causes and treatments. Ablation of the uterine lining is another treatment for adenomyosis that is discussed (unless they might they have done that prior to coil fitting already?). I've read that ablation can help stop reduce bleeding for some time; several years perhaps, might it be enough to get you through to full menopause? There is also Uterine artery embolization (UAE) but I don't think there are lots of long term studies on it's effectiveness. I don't know whether there is evidence on whether it is more or less risky than hysterectomy as a procedure either. Adenomyosis can be present alongside other abnormal uterine bleeding causes, have they definitively ruled out polyps & fibroids? I've been told my issue is a polyp but nobody seems to want to rule either way on adenomyosis. May I ask what type of investigations led to your adenomyosis diagnosis? TVU, MRI, Hystroscopy with or without biopsy?
@@happyhands117 Ha! I was sure about it until this video! I will go through with it, despite my fear at the moment. I have done all the non-surgical things to manage symptoms - I am very fit and eat healthy, I don't smoke/drink, keep stress low, sleep, take iron, etc. I have had multiple knee surgeries and know the drill of getting myself set up to be incapacitated for a period of time. I don't have kids and am currently off work so it is a good time to take care of it. I just want to make every effort to get my life back.
@@libbyoakden2983 Adenomyosis was diagnosed after a review of health history and two separate vag ultrasounds in a 4 year period, although surgery is the only way to definitively diagnose. I have had yearly exams with hysteroscopy, and had a polyp removed about 10 years ago, none since. Never once has a gyno told me they suspected endo or fibroids based on my symptoms or exams. My understanding is that adeno can resolve itself in menopause and the only 'cure' for adeno is hysterectomy and that ablation is hit or miss and my gyno didn't seem to think that was going to be very effective in my case. I have not had an MRI and am not high enough priority to get one due to my country's healthcare crisis, unless I pay $2500 out of pocket for a private scan. Additionally, I have a lump that needs to be biopsied and that can only be done in surgery. So, my thinking is that I might as well get both done and kill two birds with one stone - the lump biopsy and hysterectomy. And if I am fully honest, I don't trust our healthcare system to be thorough enough to ensure that lump is benign without surgery and follow up pathology. Sad but true.
My story is the reverse of what many people here are commenting. I was put in for a hysterectomy at 55 despite being completely asymptomatic with two fibroids and two simple cysts. I went through a whole range of tests - all of which were terrifying and invasive. I felt like I was thrown on the menopause "oh she doesn't need her reproductive organs anymore" scrapheap. I went to two private doctors for 2nd and 3rd opinions and neither of them thought hysterectomy was necessary so I self monitored for several years by going for scans privately, and all of the above had shrunk (because I came off HRT which had been fuelling the growth of cysts and fibroids). Finally went to another NHS doctor three years later, had more tests - just to see and he basically said to me something along the lines of "you don't need a hysterectomy, many doctors are too quick to suggest it but what they don't consider is bladder prolapses and incontinence issues 10 years down the line." He then said "Go away and have a nice life, you don't need to worry about this anymore". I could have kissed him.
I knew a hysterectomy wasn't right as the original consultant said "unfortunately the NHS is simply not up to giving you an MRI scan once a year to monitor you, so you'll have a hysterectomy". It was like I had no choice. I was put through unnecessary anxiety and misery let alone having a womb lining biopsy (because it was more than four mms thick even though I was on HRT at the time), an MRI, cancer blood tests including a missed call from the oncology department on Christmas eve (just to ask me to come in for a test) and 10 internals in two years. I am now sick to death of having probes/speculums etc pushed up me. It's barbaric and degrading when I had, and still have, no symptoms. Men don't get endless probing up their delicate regions! I still feel extremely angry about it - that I was going to be put through major abdominal surgery whilst being totally healthy with a low risk of cancer - why do that? I felt like a piece of meat to be carved up. Sorry for the rant.
I wish i found this before my hysterectomy. Thank you for being so frank.
I had to beg for a hysterectomy i had 2 years of such heavy bleeding at age 50. I was told i should be going into menopause but i couldnt live with the heavy bleeding from fibroids, unsuccessful treatment with decapeptyl and a fibroid resection. It has been the best decision ever, i couldnt leave the house for about 6 months. I felt this was a last resort and it was hard post op, but i have my life back. I'm 4 months post op and feeling so much better. It needs way more discussion and how it impacts women lives. I overall have fou d this a positive experience.
Thank you for this interview and honesty. I’m 7 months post total abdominal hysterectomy at age 59. It has been, and still is the hardest thing I’ve gone through. I’m still struggling with pain, tiredness and depression. My husband was incredibly supportive and helpful during recovery but it’s a lonely journey as each woman will experience it differently. I’ve got an appointment with a pelvic floor therapist soon in the hopes I can will find a way to finally be pain free.
Thank you for this podcast. I’m a month post total hysterectomy and definitely feel that I’ve been left to it. My Surgeon also said the ‘Let’s see how you get on.’ sentence. I’m not getting on at all! I’m concerned that they won’t listen to my concerns, and just dismiss me as yet another hysterical woman.
Thanks for this video, it’s very helpful. I had been considering a hysterectomy because of my extreme progesterone intolerance. I wish to continue to with oestradiol transdermally for many reasons. But you have both made me think again! Most websites I’ve read describing recovery from a vaginal hysterectomy make it sound like a piece of cake! Clearly it is not for many women!
This is a very helpful discussion, I had TAH and ovaries removed almost 3 months ago…….it is a big recovery physically and I would consider myself fit and slim before hand and I’m 42…..Also emotionally it’s a big thing to go through. The positive side is that I have my life back after anaemia and a huge fibroid. Surgical menopause is hard and obvs so much worse for a woman who cannot have HRT. One annoying thing is everyone assumes I am fully recovered now ! But it is a big change and I get fatigue very easily.
I had a hysterectomy in April for suspected Adenomyosis and endometriosis.......age 47 and i really regret it 😢
I now feel worse hormones all over the place the nhs haven't been good at all in post op care
Its severely affected my mental and physical health and wellbeing
And guess what .......pathology confirmed NO ADENOMYOSIS 😮😮
It's a conveyer belt,like you l still have vivid memories it was brutal and took me almost a year and a half to sort of feel myself again.Wishing you all the best.
Same story. Sob. Women need information.
Thank you for this information. It is so useful and valuable. It has answered a lot of questions.
What upsets me is all the perimenopausal women being denied or scared off the pill to treat their heavy bleeding because of the 2 or 3 in 10,000 extra cases of blood clots, who end up having avoidable hysterectomies - like major surgery doesn't carry much higher risks! Some of them are so anaemic they are having blood transfusions.
Reading these comments and listing to this podcast, I am now totally freaked out about my upcoming hysterectomy for severe symptoms of adenomyosis that I have been experiencing for the past 5 years. I tried the Mirena, I tried the arm implant, I take 300mg progesterone daily and nothing has helped, I have toughed it out for a long time and hoped to make it to menopause, but I am still peri. I am 48. The hospital is keeping me for one only night after, then home to my husband who had ankle surgery and is non-weight bearing for another month. I am seriously questioning my decision. 😥
If you are not sure about it, it is better to acknowledge how you feel and weigh up the alternatives. Your body is for you to make decisions about, nobody else and if it doesn't feel "right" to you, there is an important reason for it. That you feel scared because your husband will not be in the best place to help you if anything concerning happens is also a valid consideration. You're not stupid for feeling the way you do. I have been referred to the hospital to discuss treatment for a fibroid due to heavy periods but I have already said I do not want a hysterectomy due to all of this as I am now 50, still getting periods, do not have a partner to help me afterwards, noticed that when I eat alter my diet to eating more vegetables and less sugary foods that my periods are not so heavy. I am also looking for work as I am currently unemployed, so if I find work, then an upcoming hysterectomy will get in the way of keeping a new job and being the reason for so many other worries, as I need to support myself financially. I have been told there are alternatives now to treating fibroids so I have agreed to the hospital referral but will be making it clear how I feel if they try to push a hysterectomy on me.
I have abnormal uterine bleeding and have been reading about causes and treatments.
Ablation of the uterine lining is another treatment for adenomyosis that is discussed (unless they might they have done that prior to coil fitting already?). I've read that ablation can help stop reduce bleeding for some time; several years perhaps, might it be enough to get you through to full menopause?
There is also Uterine artery embolization (UAE) but I don't think there are lots of long term studies on it's effectiveness. I don't know whether there is evidence on whether it is more or less risky than hysterectomy as a procedure either.
Adenomyosis can be present alongside other abnormal uterine bleeding causes, have they definitively ruled out polyps & fibroids?
I've been told my issue is a polyp but nobody seems to want to rule either way on adenomyosis.
May I ask what type of investigations led to your adenomyosis diagnosis?
TVU, MRI, Hystroscopy with or without biopsy?
@@happyhands117 Ha! I was sure about it until this video! I will go through with it, despite my fear at the moment. I have done all the non-surgical things to manage symptoms - I am very fit and eat healthy, I don't smoke/drink, keep stress low, sleep, take iron, etc. I have had multiple knee surgeries and know the drill of getting myself set up to be incapacitated for a period of time. I don't have kids and am currently off work so it is a good time to take care of it. I just want to make every effort to get my life back.
@@libbyoakden2983 Adenomyosis was diagnosed after a review of health history and two separate vag ultrasounds in a 4 year period, although surgery is the only way to definitively diagnose. I have had yearly exams with hysteroscopy, and had a polyp removed about 10 years ago, none since. Never once has a gyno told me they suspected endo or fibroids based on my symptoms or exams. My understanding is that adeno can resolve itself in menopause and the only 'cure' for adeno is hysterectomy and that ablation is hit or miss and my gyno didn't seem to think that was going to be very effective in my case. I have not had an MRI and am not high enough priority to get one due to my country's healthcare crisis, unless I pay $2500 out of pocket for a private scan. Additionally, I have a lump that needs to be biopsied and that can only be done in surgery. So, my thinking is that I might as well get both done and kill two birds with one stone - the lump biopsy and hysterectomy. And if I am fully honest, I don't trust our healthcare system to be thorough enough to ensure that lump is benign without surgery and follow up pathology. Sad but true.