OK so over the Summer Kevin & I have been discussing the prospect of starting a family. We both know this is probably not going to be the easiest thing to achieve but we are hopeful. I'm due back to my OBGYN on Monday the 13th so we're going to discuss things with them plus my Mum's coming in with us so we have plenty of support. I was told by a fertility specialist about three years ago that I may just need some help from t hem making sure an embryo would attach to my womb but he was very optimistic.
My Doctor's over the years have disagreed with each other as to my fertility. One actually informed me at 18 that I would never be able to bear children & I would need to get my head around that prospect. However, we had a false alarm at the start of Summer. I was showing all signs of being pregnant but then I had flooding before I could take the test. It's a situation where we'll never now for sure whether we were or not. But as I said I know this isn't going to be easy. Then there's the rearing part
:-)
We actually had a discussion about names last night with my Mum & sister. Possibly the most hilarious conversation I've had in weeks. Names like Legolas, Bilbo, Frodo, Gethro & my personal favorite Gollum or Golly for short came out. It's lovely having such a great support network around me which I feel is very important when your dealing with a disease such as Endo.
I haven't had any period now in over a month but have had some flooding & some very bad days where I couldn't move for the pain. But I'm taking it one day at a time & keeping positive.
Tuesday, September 7, 2010
Sunday, May 2, 2010
Positivity really is the key...
Ok so we've all had the really really bad days where we feel so sorry for ourselves living with Endo.
But what is it that makes us get up & get on with it anyway?
The fact that life goes on & we should try make the best out of it while we can as we know that there are much worse things that could be happening to us? I definitely think so.
So the next time your having a bad day think how much worse things could be for you & keep your chin up. Most importantly stay positive! Look to the future. It doesn't have to be a bleak one. It will be what we make of it!
But what is it that makes us get up & get on with it anyway?
The fact that life goes on & we should try make the best out of it while we can as we know that there are much worse things that could be happening to us? I definitely think so.
So the next time your having a bad day think how much worse things could be for you & keep your chin up. Most importantly stay positive! Look to the future. It doesn't have to be a bleak one. It will be what we make of it!
Wednesday, April 28, 2010
Jealous of my Endo? Wanna swap??
Over the years I have noticed increasingly that certain people are actually jealous of my Endo. They seem to think that I get more attention than them because I have this disease even though I am a very private person & only my family & close friends know the full extent of my day to day challenge.
Do people really understand what is to be diagnosed with a disease you can't control that affects you so much? I don't think they do, especially people who have never been ill in their life. If anyone should be jealous it surely is those who suffer pain & stress & anguish over certain aspects of their life because of their own diseases & not those who in our eyes have a full clean bill of health.
I cannot imagine why anyone would wish this illness on themselves or any other for that matter. It is a constant 24/7 disease & does have an affect on most parts of your daily life.
For those who have this disease just know that you must stay positive throughout, even though it is very difficult at times, ignore people who think your getting more attention than them & believe me when I say that you will find out who your true friends really are.
Do people really understand what is to be diagnosed with a disease you can't control that affects you so much? I don't think they do, especially people who have never been ill in their life. If anyone should be jealous it surely is those who suffer pain & stress & anguish over certain aspects of their life because of their own diseases & not those who in our eyes have a full clean bill of health.
I cannot imagine why anyone would wish this illness on themselves or any other for that matter. It is a constant 24/7 disease & does have an affect on most parts of your daily life.
For those who have this disease just know that you must stay positive throughout, even though it is very difficult at times, ignore people who think your getting more attention than them & believe me when I say that you will find out who your true friends really are.
Saturday, April 24, 2010
If you start something you should finish it- well that or have someone else finish :-)
I'm still not sure how it happened but it started with me adding a new post to this blog this morning. I changed the layout, colours etc.. & BAM I'm painting the en suite!
The many joys of having my mind. I've been feeling really bad the past few days. Have been in a lot of pain etc.. & basically felt a bit useless. So low & behold I decided the bathroom needed to be brightened.
We already had the paint out the back so I thought why the hell not.
Got the first coat on. Part of the second while Kevin was glossing the bedroom windows & frames etc. Then my shoulder kicked in. Felt that lovely burning sensation you get when you've over stretched.
Anyway Kevin took over for me told me to rest up & is just about finished the painting now.
To be fair though I did wallpaper the hall, stairs & landing last week & glossed the stairs, banister's & newel posts. In my mind I've done my bit & I always finish what I've started with regard to the house decorating.
I'm very much my Mother's daughter. Rome wasn't built in a day.. but if we were building it would have only taken 1/2 a day!
:-)
:-)
The many joys of having my mind. I've been feeling really bad the past few days. Have been in a lot of pain etc.. & basically felt a bit useless. So low & behold I decided the bathroom needed to be brightened.
We already had the paint out the back so I thought why the hell not.
Got the first coat on. Part of the second while Kevin was glossing the bedroom windows & frames etc. Then my shoulder kicked in. Felt that lovely burning sensation you get when you've over stretched.
Anyway Kevin took over for me told me to rest up & is just about finished the painting now.
To be fair though I did wallpaper the hall, stairs & landing last week & glossed the stairs, banister's & newel posts. In my mind I've done my bit & I always finish what I've started with regard to the house decorating.
I'm very much my Mother's daughter. Rome wasn't built in a day.. but if we were building it would have only taken 1/2 a day!
:-)
:-)
It's all in your head.. Is it?
Ok so to continue on. I seen the specialist & was sent for an ultrasound where they discovered a "cyst" on my right ovary (from the anatomical position). At the time of the scan it was relatively small only measuring 3.5 cm x 3.5 cm. The results were discussed with a member of my specialists team & they decided to bring me back in six weeks time for a follow up scan to monitor the cyst. They blamed this on all my pain & irregular bleeding & didn't really believe me when I showed them the diary I'd been keeping for the previous 6 years or so.
Six weeks later & the pain is increasing. I'm starting to think I'm imagining all the pain as the Doctors are hinting that I couldn't be in so much pain from a simple cyst.
The scan reveals my "cyst" is now 6.8 cm x 6.5 cm. It's decided that they need to remove this cyst asap so I'm booked in for a laparoscopy & possible laparotomy. They are starting to think now that something is amiss.
I had the surgery & woke up in quite a lot of pain. My Specialist McK came to see me to apologise for the misdiagnosis. It turned out there was no cyst! When they opened me up & went in they discovered I had extremely severe Endometriosis. He actually commented that he had not come across a case this severe himself. The Endo was present all over my womb as well as behind it, stuck to my bowel & bladder. They'd had to rotate both ovaries & perform an aggressive laparotomy to attempt to burn away the tissue. This they couldn't manage as there were too many growths & already quite a lot of scar tissue due to adhesions & the endo itself. The were several large cysts in the womb itself which they managed to remove. The pictures alone were shocking to me at the time.
I was kept in as I reacted quite badly to the anaesthetic & was very ill. A member of McK's team came around to see me the following morning & dropped the bombshell on me that not only was my uterus tilted forward but that due to the extent of my disease I would never have children. I was now 18 & it was such a negative response that I didn't fully comprehend what he was actually saying to me until several months later.
What had started out as a cyst turned out to be my worst nightmare but what Mum had be trying to prepare me for all along.
My experience in finally getting diagnosed shows that you really need to push if you feel there is something wrong with your body. Who knows you better than yourself?
Six weeks later & the pain is increasing. I'm starting to think I'm imagining all the pain as the Doctors are hinting that I couldn't be in so much pain from a simple cyst.
The scan reveals my "cyst" is now 6.8 cm x 6.5 cm. It's decided that they need to remove this cyst asap so I'm booked in for a laparoscopy & possible laparotomy. They are starting to think now that something is amiss.
I had the surgery & woke up in quite a lot of pain. My Specialist McK came to see me to apologise for the misdiagnosis. It turned out there was no cyst! When they opened me up & went in they discovered I had extremely severe Endometriosis. He actually commented that he had not come across a case this severe himself. The Endo was present all over my womb as well as behind it, stuck to my bowel & bladder. They'd had to rotate both ovaries & perform an aggressive laparotomy to attempt to burn away the tissue. This they couldn't manage as there were too many growths & already quite a lot of scar tissue due to adhesions & the endo itself. The were several large cysts in the womb itself which they managed to remove. The pictures alone were shocking to me at the time.
I was kept in as I reacted quite badly to the anaesthetic & was very ill. A member of McK's team came around to see me the following morning & dropped the bombshell on me that not only was my uterus tilted forward but that due to the extent of my disease I would never have children. I was now 18 & it was such a negative response that I didn't fully comprehend what he was actually saying to me until several months later.
What had started out as a cyst turned out to be my worst nightmare but what Mum had be trying to prepare me for all along.
My experience in finally getting diagnosed shows that you really need to push if you feel there is something wrong with your body. Who knows you better than yourself?
Friday, April 23, 2010
Keeping it in the family
Seeing as this is my first entry I thought I'd begin with some family history which will in turn explain why I wasn't shocked when I discovered I had Endo.
My Maternal Nan, my Mum & her six sister's all suffered with endometriosis for years before they were diagnosed & in all cases except one hysterectomies (total removal of the womb) had to be performed for them to get any relief. The remaining sister who is 12 years older than my Mum had just her ovaries removed but up until now still suffers with pain. Mum is now 47, had a hysterectomy at 32 after having me at 22 & my sister at 27. She did unfortunately have several miscarriage's in before & in between her pregnancies.
My Mum (Gloria) was only diagnosed with Endo when she was trying to get pregnant about a year after having me. She went in to see her specialist & after weeks of testing & laparoscopies plus losing a foetus they discovered that she had endometriosis.
Ok so quickly for anyone who doesn't know or is unsure Endometriosis is defined as;
Endometrioisis(from endo, "inside", and metra, "womb") is a debilitating gynecological medical condition in females in which endometrial-like cells appear and flourish in areas outside the uterine cavity, most commonly on the ovaries. The uterine cavity is lined by endometrial cells, which are under the influence of female hormones. These endometrial-like cells in areas outside the uterus (endometriosis) are influenced by hormonal changes and respond similarly as do those cells found inside the uterus. Symptoms often worsen in time with the menstrual cycle.
Endometriosis is typically seen during the reproductive years; it has been estimated that it occurs in roughly 5% to 10% of women.
Symptoms may depend on the site of active endometriosis. Its main but not universal symptom is pelvic pain in various manifestations. Endometriosis is a common finding in women with infertility.
I know it sounds like a completely manageable situation-on paper maybe but in reality day to day it can be horrendous. Every patient is different, has different symptoms & stages of the disease & some women, like my Mum can even become pregnant, give birth before they'll ever realise there may be something not quite right.
Moving on from the long winded defintion's & such now. So my Mum was diagnosed, put on Danazol which caused her to black out constantly & in the end the con's outwayed the pro's of the treatment. Mum stopped taking Danazol herself & within a few weeks realised she was once again pregnant. This time nothing went wrong with the pregnancy & on 27th September 1990 my baby sister Vicky was born.
Five years later however, after suffering for more than 8 years Mum was completely fed up with the pain & heavy bleeding. Add that to raising two young children & I'm sure you can see where she was coming from. My Dad & her knew they didn't want any further children & even though it was my Mum suffering my Mum's specialist went over my Mum's head to my Dad to "make sure it was ok" to go ahead with the Hysterectomy. Such was Ireland back then. Mum had the surgery at 32 as I've already mentioned & in her own words "has never looked back". She (touch wood) hasn't had any further symptoms from the Endo but due to her age the surgeons decided to leave her with one ovary to "ease" her into the symptoms of the menopause. She is still to this day suffering menopausal like symptoms of hot flashes, night sweats, clammy feeling, depression, weight gain & now has osteoporosis in her lumbar region & both hips. My Mum decided not to take any HRT while going through this period & is confident that her side effects are beginning to settle down. Other than the effects of "getting on" as she says.
My Mum & I are so close, we consider each other our best friends & can discuss anything with each other. So when my Mum was going through her bad times with Endo she would talk to me & explain why Mum was feeling "teary" today or tender, sore, tired or "down". She also always made me aware that there was a possibility that I could too have this disease & when Vicky was born one of my immediate thoughts was that she could grow up & end up having it too.
I began to suffer at age 11 & continued until about 17 when we finally found a G.P who would take us seriously. As my Mum had such a strong history the doctor's assumed she was "wishing" the disease on me rather than thinking it might be hereditary. No one believed that my symptoms were as bad as they were & even though I kept a constant diary all through each cycle & on days when I would have pain, fell faint or weak they still wouldn't take us seriously. One Doctor actually told my Mum "just because you had Endo doesn't mean your daughter does". Which in my opinion was completely out of line as my Mum never used her history as the reason she thought there was something amiss with my own cycle. She knew the symptoms having lived through the disease & watching her Mum & Sister's live through it & that is why she had me keep track of everything.
Eventually, I got referred to a specialist OBGYN & my journey began to find out what was causing me such pain & heavy irregular periods.
The referral came from a stand in or locom G.P as my usual G.P happened to be out ill himself. I had at this time tried 3 different types of OCP's (different doses) but unfortunately had to be taken off as my childhood problem of severe migraines & inherited high blood pressure (Dad's Mum) surfaced again. Plus, while on a flight with my Mum both my legs swelled up & it was diagnosed that I was at risk of DVT.
In October 1997 I had my first appointment with my specialist & thus my journey, such as it was began.
My Maternal Nan, my Mum & her six sister's all suffered with endometriosis for years before they were diagnosed & in all cases except one hysterectomies (total removal of the womb) had to be performed for them to get any relief. The remaining sister who is 12 years older than my Mum had just her ovaries removed but up until now still suffers with pain. Mum is now 47, had a hysterectomy at 32 after having me at 22 & my sister at 27. She did unfortunately have several miscarriage's in before & in between her pregnancies.
My Mum (Gloria) was only diagnosed with Endo when she was trying to get pregnant about a year after having me. She went in to see her specialist & after weeks of testing & laparoscopies plus losing a foetus they discovered that she had endometriosis.
Ok so quickly for anyone who doesn't know or is unsure Endometriosis is defined as;
Endometrioisis(from endo, "inside", and metra, "womb") is a debilitating gynecological medical condition in females in which endometrial-like cells appear and flourish in areas outside the uterine cavity, most commonly on the ovaries. The uterine cavity is lined by endometrial cells, which are under the influence of female hormones. These endometrial-like cells in areas outside the uterus (endometriosis) are influenced by hormonal changes and respond similarly as do those cells found inside the uterus. Symptoms often worsen in time with the menstrual cycle.
Endometriosis is typically seen during the reproductive years; it has been estimated that it occurs in roughly 5% to 10% of women.
Symptoms may depend on the site of active endometriosis. Its main but not universal symptom is pelvic pain in various manifestations. Endometriosis is a common finding in women with infertility.
I know it sounds like a completely manageable situation-on paper maybe but in reality day to day it can be horrendous. Every patient is different, has different symptoms & stages of the disease & some women, like my Mum can even become pregnant, give birth before they'll ever realise there may be something not quite right.
Moving on from the long winded defintion's & such now. So my Mum was diagnosed, put on Danazol which caused her to black out constantly & in the end the con's outwayed the pro's of the treatment. Mum stopped taking Danazol herself & within a few weeks realised she was once again pregnant. This time nothing went wrong with the pregnancy & on 27th September 1990 my baby sister Vicky was born.
Five years later however, after suffering for more than 8 years Mum was completely fed up with the pain & heavy bleeding. Add that to raising two young children & I'm sure you can see where she was coming from. My Dad & her knew they didn't want any further children & even though it was my Mum suffering my Mum's specialist went over my Mum's head to my Dad to "make sure it was ok" to go ahead with the Hysterectomy. Such was Ireland back then. Mum had the surgery at 32 as I've already mentioned & in her own words "has never looked back". She (touch wood) hasn't had any further symptoms from the Endo but due to her age the surgeons decided to leave her with one ovary to "ease" her into the symptoms of the menopause. She is still to this day suffering menopausal like symptoms of hot flashes, night sweats, clammy feeling, depression, weight gain & now has osteoporosis in her lumbar region & both hips. My Mum decided not to take any HRT while going through this period & is confident that her side effects are beginning to settle down. Other than the effects of "getting on" as she says.
My Mum & I are so close, we consider each other our best friends & can discuss anything with each other. So when my Mum was going through her bad times with Endo she would talk to me & explain why Mum was feeling "teary" today or tender, sore, tired or "down". She also always made me aware that there was a possibility that I could too have this disease & when Vicky was born one of my immediate thoughts was that she could grow up & end up having it too.
I began to suffer at age 11 & continued until about 17 when we finally found a G.P who would take us seriously. As my Mum had such a strong history the doctor's assumed she was "wishing" the disease on me rather than thinking it might be hereditary. No one believed that my symptoms were as bad as they were & even though I kept a constant diary all through each cycle & on days when I would have pain, fell faint or weak they still wouldn't take us seriously. One Doctor actually told my Mum "just because you had Endo doesn't mean your daughter does". Which in my opinion was completely out of line as my Mum never used her history as the reason she thought there was something amiss with my own cycle. She knew the symptoms having lived through the disease & watching her Mum & Sister's live through it & that is why she had me keep track of everything.
Eventually, I got referred to a specialist OBGYN & my journey began to find out what was causing me such pain & heavy irregular periods.
The referral came from a stand in or locom G.P as my usual G.P happened to be out ill himself. I had at this time tried 3 different types of OCP's (different doses) but unfortunately had to be taken off as my childhood problem of severe migraines & inherited high blood pressure (Dad's Mum) surfaced again. Plus, while on a flight with my Mum both my legs swelled up & it was diagnosed that I was at risk of DVT.
In October 1997 I had my first appointment with my specialist & thus my journey, such as it was began.
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