Endometriosis treatment for Bex
Donation protected
Hi I'm Bex, and I need your help!
What is Endometriosis?
Endometriosis is a life long condition that affects 1 in 10 women to some degree. It's where tissue that is similar to the lining of the womb starts to grow in other parts of the body, usually in the abdomen, though it has been found in most parts of the body. It is in the NHS' top 20 most painful conditions alongside conditions such as heart attacks and arthritis.
It often includes lesions (the endometrium like tissue), adhesions (sticking together) of organs and endometriomas - cysts. All of which cause huge amounts of pain.
The symptoms include horrific period pain, gut, stomach and bowel issues, heavy periods, fatigue, painful sex and more. It takes on average around 8 years to diagnose. I'm now 16 years in from my first appointment for period pain, having been told time and time again that I must have ibs, depression or "just painful periods". There is a high rate of infertility for those with endometriosis.
Why do I need your help?
Unfortunately one of the common treatments whilst waiting for a laparoscopy is hormonal birth control. Unfortunately all kinds of birth control make me very sick and so I cannot take it and do not get much relief when I do. The only way endometriosis can be diagnosed and treated currently is via a laparoscopy and needs to be expertly excised to prevent reoccurrence. It cannot usually be seen on scans.
I've been told by a number of doctors that it could be the cause of my symptoms and have had scans that show I have a cyst, which may or may not be an endometrioma. The NHS has shown time and time again that it is not detecting and treating Endometriosis quickly enough.
The NHS waiting list is currently at least a year just to see gynaecology for a consultation, with a much longer wait for a laparoscopy. I'm at breaking point and cannot wait this long.
I'm currently sick anywhere between 2 days and 2 weeks every month. As I'm self employed I receive no sick pay and am in a spiral of needing treatment in order to get back to work, but not being able to afford it due to not working. Getting disability benefit support is near impossible without a diagnosis.
My job is incredibly active, so I miss work more than some others with the same condition. I'm incredibly unwell and it's affecting my mental health greatly. It sounds dramatic but the pain is so great that I literally lay in the bath all day wanting to die, and this is after taking painkillers. I am not adverse to pain, my job is fairly painful but this pain is so bad I cannot understand how any human could experience more. The thought of going through this every month until menopause causes suicidal thoughts.
How will the money be spent?
I need just over £1000 for my initial consultation and tests, then I will be told if a laparoscopy is necessary and the likely cost of treatment.
£20k is the worst case scenario if I need my bowels to be re-sectioned or need a hysterectomy (hysterectomy is usually for adenomyosis, if that's found also). I should have an idea after my first appointment if that's necessary, but they may not know until they go in, so it's best for me to cover all bases. If it's a fairly straightforward case we are looking at around £6/7k.
I will also likely be out of work for some time after the laparoscopy due to the physical nature of my job, and would like to have a little cushion to support that.
If I do not need the full amount raised it will be donated to charity or to another individual with endometriosis seeking treatment.
Who will be treating me?
I'm currently doing a lot of research and have narrowed it down to two endometriosis specialists in London and Surrey. It's important that I seek out the best surgeons as Ive heard time and time again from others who are on multiple operations. I need a skilled surgeon who is an expert is removing most, if not all, of the Endometriosis if it's found. When expertly removed around 80% of patients have no more or very minimal symptoms.
What if I don't have Endometriosis?
Ruling it out is absolutely essential to being able to move forward with other treatments and explorations. As it's the most likely cause it needs to be looked at first.
Please help me get back to what I love most: helping others build confidence and helping others do anything things with their bodies!
What is Endometriosis?
Endometriosis is a life long condition that affects 1 in 10 women to some degree. It's where tissue that is similar to the lining of the womb starts to grow in other parts of the body, usually in the abdomen, though it has been found in most parts of the body. It is in the NHS' top 20 most painful conditions alongside conditions such as heart attacks and arthritis.
It often includes lesions (the endometrium like tissue), adhesions (sticking together) of organs and endometriomas - cysts. All of which cause huge amounts of pain.
The symptoms include horrific period pain, gut, stomach and bowel issues, heavy periods, fatigue, painful sex and more. It takes on average around 8 years to diagnose. I'm now 16 years in from my first appointment for period pain, having been told time and time again that I must have ibs, depression or "just painful periods". There is a high rate of infertility for those with endometriosis.
Why do I need your help?
Unfortunately one of the common treatments whilst waiting for a laparoscopy is hormonal birth control. Unfortunately all kinds of birth control make me very sick and so I cannot take it and do not get much relief when I do. The only way endometriosis can be diagnosed and treated currently is via a laparoscopy and needs to be expertly excised to prevent reoccurrence. It cannot usually be seen on scans.
I've been told by a number of doctors that it could be the cause of my symptoms and have had scans that show I have a cyst, which may or may not be an endometrioma. The NHS has shown time and time again that it is not detecting and treating Endometriosis quickly enough.
The NHS waiting list is currently at least a year just to see gynaecology for a consultation, with a much longer wait for a laparoscopy. I'm at breaking point and cannot wait this long.
I'm currently sick anywhere between 2 days and 2 weeks every month. As I'm self employed I receive no sick pay and am in a spiral of needing treatment in order to get back to work, but not being able to afford it due to not working. Getting disability benefit support is near impossible without a diagnosis.
My job is incredibly active, so I miss work more than some others with the same condition. I'm incredibly unwell and it's affecting my mental health greatly. It sounds dramatic but the pain is so great that I literally lay in the bath all day wanting to die, and this is after taking painkillers. I am not adverse to pain, my job is fairly painful but this pain is so bad I cannot understand how any human could experience more. The thought of going through this every month until menopause causes suicidal thoughts.
How will the money be spent?
I need just over £1000 for my initial consultation and tests, then I will be told if a laparoscopy is necessary and the likely cost of treatment.
£20k is the worst case scenario if I need my bowels to be re-sectioned or need a hysterectomy (hysterectomy is usually for adenomyosis, if that's found also). I should have an idea after my first appointment if that's necessary, but they may not know until they go in, so it's best for me to cover all bases. If it's a fairly straightforward case we are looking at around £6/7k.
I will also likely be out of work for some time after the laparoscopy due to the physical nature of my job, and would like to have a little cushion to support that.
If I do not need the full amount raised it will be donated to charity or to another individual with endometriosis seeking treatment.
Who will be treating me?
I'm currently doing a lot of research and have narrowed it down to two endometriosis specialists in London and Surrey. It's important that I seek out the best surgeons as Ive heard time and time again from others who are on multiple operations. I need a skilled surgeon who is an expert is removing most, if not all, of the Endometriosis if it's found. When expertly removed around 80% of patients have no more or very minimal symptoms.
What if I don't have Endometriosis?
Ruling it out is absolutely essential to being able to move forward with other treatments and explorations. As it's the most likely cause it needs to be looked at first.
Please help me get back to what I love most: helping others build confidence and helping others do anything things with their bodies!
Organiser
Rebecca Smith
Organiser
England