My mystery solved
Firstly a quick catch up. You may recall (if you've come across my blog before) that I've been having abdominal issues. When we were still in the U.K. it was still undiagnosed despite a laparoscopy and many tests and scans. Well the short version is that I have endometriosis. I've basically diagnosed myself by putting together all the facts. I know diagnosing oneself when there is no medical training can be dangerous but let me reassure you that I have had this listed as a possibility. After my laparoscopy I was told I had some endometriosis but not enough to cause the pain I was having. Having looked at a few websites I pieced the puzzle together to discover this has been an issue for 16 years and been missed time and again.
The best explanation of what this disease is is this: "Endometriosis can be a distressing disease affecting women's health. It can cause the most excruciating pain and in some women it appears to trigger fertility or infertility problems or as we prefer to call it sub-fertility. Whether all the symptoms are caused by endometriosis or they originate from a dreadfully ill body, trying to stay well, surviving the symptoms, becomes a task in itself. Your body wants to be well as that is its natural state. Every body system depends upon the nutrients getting into each cell of the body in order for them to work efficiently. Endometriosis is systemic; it affects every part of the body not just the gynaecolgical organs, though period pain is a common symptom along with irregular periods. You feel ill all over, dreadful fatigue can rule life and the digestive system involvement can trigger bloating, bouts of constipation or diarrohea, abdominal pain and bladder problems. This is indicative of a disease which is affecting the whole body, not just the reproductive organs. The main symptoms of endometriosis can be painful periods (dysmenorrhea), painful intercourse (dyspareunia), painful ovulation, heavy periods often lasting for many days, PMS, there is an increased risk of infertility or as I prefer to call it sub-fertility." This was taken from endometriosis.co.uk and it has been a really helpful source in my struggle to combat my symptoms.
If you want to know more about the facts (as many more qualified people than I haven't written about them so I won't try) then here are the following links:
[caption id="attachment_1574" align="aligncenter" width="540"]
Some days I just want to curl up with my hot water bottle[/caption]
There's still slight speculation in my case but I'm pretty convinced. I've looked thoroughly at my personal history and combined that with research from some of the pages linked above. I was diagnosed with adhesions when I was 21 having been told that their origin was a mystery. I have since discovered that they are linked to endometriosis. Then everything settled down and my symptoms subsided with only occasional bouts of pain. Then about a year ago they came back with a vengeance. Oh so much pain and no obvious cause. I went through the lengthy diagnosis checklist with my GP back in the U.K. Whilst he and the other doctors I saw were lovely it was misdiagnosed time and again as IBS, stress or depression, generic hormonal imbalance and even a miscarriage! Eventually I saw a gynecologist and, even though I mentioned the adhesions I'd had before he completely dismissed them saying that diagnosis was wrong and making me feel stupid. It's a bit of a kick in the teeth when you're told to tell them everything and then they can make you feel so small! Anyway another gynecologist ended up performing my laparoscopy and told me I had a "small amount of endometriosis but not enough to be causing the amount of pain" I was having. Having done more of my own research I discovered that it doesn't matter how much actual endometriosis you have as it's not linked to the severity of pain you get. How is it that I can discover the link with adhesions and the level of endometriosis not being linked to level of pain in a quick internet search yet the two rude gynecologists I saw this year didn't know this?!
I know it sounds sensitive but when you're in so much pain you can't look after your own kids it gets you down. Although my first gynecologist (when I was 21) was lovely it was another missed diagnosis. So I now discover that what I've been struggling with for 15 years is endometriosis. Now I could rant and rave even more about the injustice of not being diagnosed sooner but that won't make me feel better. So instead, now I've told my story, I shall focus on how to get better.
I'm getting by some weeks but struggling others . I'm looking at changing my diet but to drop wheat out when I've just moved to France is rather tricky. However, I am determined to try...some days. I've kept dairy free which I think helps but I've discovered that soy has loads of oestrogen in so isn't great for my symptoms. So the soya milk is out and the oat milk is in. Luckily France has an amazing amount of goat and sheep cheese so I have a good excuse to explore that. I'm also doing yoga every day whether it's 5 minutes or 50 and keeping up my routine of walking the dogs. Gentle exercise works. Some days I feel utterly rubbish and a gentle yoga stretch works on my body, mind and my spirit, even when the latter feels broken. The best thing to do is a piece of advice on endometriosis.co.uk "Give yourself permission to be ill and allow your body the time it needs to heal." I'm not too good at that one but I'm learning.
[caption id="attachment_1576" align="aligncenter" width="720"]
A good, gentle walk always helps even if its the last thing I feel like doing[/caption]
Now I do know I'm one of the lucky ones. Endometriosis causes thousands of women to have fertility issues. I've had 3 healthy babies and I get to keep them forever! I am so, so, so lucky that I have been blessed with these people in my life and that my body worked well enough to not only conceive them without help but that my pregnancies where healthy and easy for the babies and me. Sometimes I struggle looking after them when I have a rough patch but they bring me so much love and joy that they keep my spirit alive and healthy. Actually its the love and support from all my friends and family (even those who are far away) that keeps me going. Some days I could easily curl up into a ball and never leave the bedroom. But the little people (even though 2 are not so little now) come into my room and give me the best hugs. And then there's Frank, my amazing, wonderful, supportive Frank. Hes not only sought the diagnosis with me but he's taken days off work to look after the kids and brought me endless cups of tea and mochas and refilled my hot water bottle. Without these people in my life I don't know how I'd cope. From the love my mum sends every day (I can feel it in the air) to a text from my sister or best mate, it all keeps me going when things are rough.
Right, I'm off for a cuppa and some crochet.
See you soon,
Josie. Xxx
[caption id="attachment_1575" align="aligncenter" width="540"]
Frank helps me smile every day[/caption]
Update: due to an unfortunate spam issue some comments aren't coming through. Here's one I saved and am very grateful for:
"Just want to send a gentle hug and applaude you for this open and honest account of dealing with health issues that get dismissed by professionals.
I know how that can make you feel so small and hesitate before asking for help again when things flare up. I’ve experienced similar responses over different health issues and had to fight a few battles to get scans and diagnosis when there was reluctance to give them, and it isn’t easy to go against the ‘professionals’ who are holding all the strings… but in my case it turned out I was right and an operation was needed. Self diagnosis can also make you appear neurotic and I know I worried that they felt I was fussing over nothing… but if you can present the case with facts and backed up information, a good doctor should at least look into things a bit more for you. They are only humans, and can make errors, and should accept that they may be missing a detail that is evident to you and impacting on your life.
I hope you get some help at last, and that the care you are giving yourself improves your day to day health.
All best wishes to you."
Thank you anonymous sender. I'm grateful for the encouragement.
The best explanation of what this disease is is this: "Endometriosis can be a distressing disease affecting women's health. It can cause the most excruciating pain and in some women it appears to trigger fertility or infertility problems or as we prefer to call it sub-fertility. Whether all the symptoms are caused by endometriosis or they originate from a dreadfully ill body, trying to stay well, surviving the symptoms, becomes a task in itself. Your body wants to be well as that is its natural state. Every body system depends upon the nutrients getting into each cell of the body in order for them to work efficiently. Endometriosis is systemic; it affects every part of the body not just the gynaecolgical organs, though period pain is a common symptom along with irregular periods. You feel ill all over, dreadful fatigue can rule life and the digestive system involvement can trigger bloating, bouts of constipation or diarrohea, abdominal pain and bladder problems. This is indicative of a disease which is affecting the whole body, not just the reproductive organs. The main symptoms of endometriosis can be painful periods (dysmenorrhea), painful intercourse (dyspareunia), painful ovulation, heavy periods often lasting for many days, PMS, there is an increased risk of infertility or as I prefer to call it sub-fertility." This was taken from endometriosis.co.uk and it has been a really helpful source in my struggle to combat my symptoms.
If you want to know more about the facts (as many more qualified people than I haven't written about them so I won't try) then here are the following links:
[caption id="attachment_1574" align="aligncenter" width="540"]
Some days I just want to curl up with my hot water bottle[/caption]There's still slight speculation in my case but I'm pretty convinced. I've looked thoroughly at my personal history and combined that with research from some of the pages linked above. I was diagnosed with adhesions when I was 21 having been told that their origin was a mystery. I have since discovered that they are linked to endometriosis. Then everything settled down and my symptoms subsided with only occasional bouts of pain. Then about a year ago they came back with a vengeance. Oh so much pain and no obvious cause. I went through the lengthy diagnosis checklist with my GP back in the U.K. Whilst he and the other doctors I saw were lovely it was misdiagnosed time and again as IBS, stress or depression, generic hormonal imbalance and even a miscarriage! Eventually I saw a gynecologist and, even though I mentioned the adhesions I'd had before he completely dismissed them saying that diagnosis was wrong and making me feel stupid. It's a bit of a kick in the teeth when you're told to tell them everything and then they can make you feel so small! Anyway another gynecologist ended up performing my laparoscopy and told me I had a "small amount of endometriosis but not enough to be causing the amount of pain" I was having. Having done more of my own research I discovered that it doesn't matter how much actual endometriosis you have as it's not linked to the severity of pain you get. How is it that I can discover the link with adhesions and the level of endometriosis not being linked to level of pain in a quick internet search yet the two rude gynecologists I saw this year didn't know this?!
I know it sounds sensitive but when you're in so much pain you can't look after your own kids it gets you down. Although my first gynecologist (when I was 21) was lovely it was another missed diagnosis. So I now discover that what I've been struggling with for 15 years is endometriosis. Now I could rant and rave even more about the injustice of not being diagnosed sooner but that won't make me feel better. So instead, now I've told my story, I shall focus on how to get better.
I'm getting by some weeks but struggling others . I'm looking at changing my diet but to drop wheat out when I've just moved to France is rather tricky. However, I am determined to try...some days. I've kept dairy free which I think helps but I've discovered that soy has loads of oestrogen in so isn't great for my symptoms. So the soya milk is out and the oat milk is in. Luckily France has an amazing amount of goat and sheep cheese so I have a good excuse to explore that. I'm also doing yoga every day whether it's 5 minutes or 50 and keeping up my routine of walking the dogs. Gentle exercise works. Some days I feel utterly rubbish and a gentle yoga stretch works on my body, mind and my spirit, even when the latter feels broken. The best thing to do is a piece of advice on endometriosis.co.uk "Give yourself permission to be ill and allow your body the time it needs to heal." I'm not too good at that one but I'm learning.
[caption id="attachment_1576" align="aligncenter" width="720"]
A good, gentle walk always helps even if its the last thing I feel like doing[/caption]Now I do know I'm one of the lucky ones. Endometriosis causes thousands of women to have fertility issues. I've had 3 healthy babies and I get to keep them forever! I am so, so, so lucky that I have been blessed with these people in my life and that my body worked well enough to not only conceive them without help but that my pregnancies where healthy and easy for the babies and me. Sometimes I struggle looking after them when I have a rough patch but they bring me so much love and joy that they keep my spirit alive and healthy. Actually its the love and support from all my friends and family (even those who are far away) that keeps me going. Some days I could easily curl up into a ball and never leave the bedroom. But the little people (even though 2 are not so little now) come into my room and give me the best hugs. And then there's Frank, my amazing, wonderful, supportive Frank. Hes not only sought the diagnosis with me but he's taken days off work to look after the kids and brought me endless cups of tea and mochas and refilled my hot water bottle. Without these people in my life I don't know how I'd cope. From the love my mum sends every day (I can feel it in the air) to a text from my sister or best mate, it all keeps me going when things are rough.
Right, I'm off for a cuppa and some crochet.
See you soon,
Josie. Xxx
[caption id="attachment_1575" align="aligncenter" width="540"]
Frank helps me smile every day[/caption]Update: due to an unfortunate spam issue some comments aren't coming through. Here's one I saved and am very grateful for:
"Just want to send a gentle hug and applaude you for this open and honest account of dealing with health issues that get dismissed by professionals.
I know how that can make you feel so small and hesitate before asking for help again when things flare up. I’ve experienced similar responses over different health issues and had to fight a few battles to get scans and diagnosis when there was reluctance to give them, and it isn’t easy to go against the ‘professionals’ who are holding all the strings… but in my case it turned out I was right and an operation was needed. Self diagnosis can also make you appear neurotic and I know I worried that they felt I was fussing over nothing… but if you can present the case with facts and backed up information, a good doctor should at least look into things a bit more for you. They are only humans, and can make errors, and should accept that they may be missing a detail that is evident to you and impacting on your life.
I hope you get some help at last, and that the care you are giving yourself improves your day to day health.
All best wishes to you."
Thank you anonymous sender. I'm grateful for the encouragement.
[…] all this illness I’ve not been good. My endometriosis has really flared up lately. I’m hoping all will calm down and return to normal soon so I can […]
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