Needless to say I had to go back to Leeds again to hear what the outcome was. I already new so it seemed stupid but I guess I had to gear myself up for another fight. I was expecting the same thing again, to be told that he could do the surgery again and that we would keep going till we got it right but unbeknown to me my world was about to come crashing down around me and destroy everything I had pinned my hopes on.
I arrived back to the LGI and was shown into a room and sat there was my gynaecologist and his 2 nurses. They sat me down and told me that it would be wise to have mum in the room with me so I went to get her and we sat down together and waited. The look on my poor gynaecologists face was one of such sorrow and despair, like he didn't quite have enough words for me. He looked me in the eyes and as gently as he could told me that there was nothing more that he could do and that I would never be able to have children.
Right there in that very moment my life changed, I didn't know what to feel. I was distraught that everything I had been through was for nothing, I was relieved I didn't have to go through with it again but most of all I felt empty. Because of other health problems since birth the only thing I had ever cared about since I was old enough to care was that my health wouldn't stop me from having children, now I was being told that none of that mattered because my womb couldnt/wouldnt carry children whether my heart could cope with it or not. He then suggested that I should have a hysterectomy as that would get rid of the source of endometriosis and hopefully give me a better quality of life. I was 16.
I don't remember what I told him but I remember laughing, I laughed so hard, I was convinced he was joking, this couldn't be happening to me. This happened to other people. I told him that I would have to think about it and left. I walked back to the car and started to cry. I wasn't sobbing, just silent tears dropping down my cheeks. Mum was walking behind me, she still hadn't said anything to me, but then again, what could she say? I spent the entire journey back home silently crying, looking out of the window and watching the world go by, wondering if anyone cared. Until this turn of events I had been a devout Christian but that day I lost my faith completely, God wouldn't take something like that away from me, he mustn't exist.
I rang my dad to tell him that I wouldn't need another operation and that everything was ok. I couldn't tell him the truth, telling someone would mean admitting it, admitting it would mean it was real. To me it wasn't, it couldn't be real. Mum must have told my dad because he came over to see me and gave me a hug, told me to keep strong and keep smiling. Bless his heart, he only wanted the best for me and I think from a fathers perspective the biggest worry for him was me having to endure more surgery not everything else that it entailed. I can't blame him, he will never understand it from a womans point of view and he will never understand it from my point of view, but then again no one ever would.
Sunday, 21 March 2010
Friday, 19 March 2010
Period or no period?
Well I am pleased to report that I did infact start to bleed. It seemed that the operation had finally worked and all the pain and suffering had been worth it. I got a really heavy period but I was so relieved that I didn't care, at least not at first. I expected it to last for a few days and then stop, as I assumed most women's periods did but mine had a different idea, it carried on and I bled really heavily for nearly 3 months. My GP didn't want to give me anything to stop it or make it lighter because of everything that had happened to give me the period in the first place.
When I finally stopped bleeding. I was ecstatic, not only had they now got it right but I had stopped and I was hopeful that it would settle down, to a 28 day cycle. I waited with bated breath for the next one to come, only it never did.
I went back to see my gynaecologist in Leeds and they performed another MRI scan on me but this time it was just to confirm what we already new, that it had again failed. When I got the appointment through for the results of the MRI scan I didn't want to go, what was the point, I was only going to be told again that it had failed and I had heard that enough times now, I didn't have the strength or the motivation to carry on and go through it all again.
When I finally stopped bleeding. I was ecstatic, not only had they now got it right but I had stopped and I was hopeful that it would settle down, to a 28 day cycle. I waited with bated breath for the next one to come, only it never did.
I went back to see my gynaecologist in Leeds and they performed another MRI scan on me but this time it was just to confirm what we already new, that it had again failed. When I got the appointment through for the results of the MRI scan I didn't want to go, what was the point, I was only going to be told again that it had failed and I had heard that enough times now, I didn't have the strength or the motivation to carry on and go through it all again.
Wednesday, 17 March 2010
Did it work?
I went home and spent 6-8 weeks recovering curled up on the sofa infront of friends - gotta love friends! I waited and waited but no period came and I was beginning to get really bad pain again in my tummy so off to the GP I went.
GP said that I should have had a period by this point and that I should ring Gynaecologist and see what he says. My Gynaecologist told me to come in and have an ultrasound scan and another MRI scan.
So I made the 160 mile round trip back to Leeds with mum and had both scans. Then it was another waiting game for an appointment with Gynaecologist. He rung me after 2 weeks and told me to come down the following day to talk to him and the dialator nurse. They made sure I had been using the dialators properly but then informed me that the operation had not worked and the opening had infact closed up again. So everything I had been through had been for nothing. I was so devastated, I didn't see the point in anything now, everytime I tried it went wrong. My body was determined to cause me misery.
Again I was given the choice of hysterectomy or to re-do the surgery and everytime I had something done it gave me the slightest bit of hope that one day I would be able to become a mummy. So I opted for the surgery again. This time it would be slightly different as I wouldnt be under quite so long, my Gynaecologist could open up what he did previously and insert another stent for another 3 weeks. He organised the surgery and for the second time in 6 months I travelled down to Leeds with my parents to face the operating theatre again.
When I arrived at the hospital I was shown into the same private room that I had had the last time. Mum was given a bed/chair again and it was just like de ja vu. I had to be there again 24 hours before surgery for bowel prep. The surgery lasted 4 hours and I spent 3 days again lay down doing nothing. Due to the amount of time I had spent in there all the nurses felt like friends and would come and sit with me after their shifts had finished and when it was quiet on the wards they would order pizza or chinese in and share it with me. After 7 days I was given a wheelchair again and free run of the hospital and grounds. I even started spending time in the staff room and felt that I could manage a night or 2 on my own without mum so gave her time to herself.
After 23 days the stent was removed and I got sent home again with an appointment to see the Gynaecologist in 6 weeks for a follow up and to hopefully tell him that I had had my first period.
GP said that I should have had a period by this point and that I should ring Gynaecologist and see what he says. My Gynaecologist told me to come in and have an ultrasound scan and another MRI scan.
So I made the 160 mile round trip back to Leeds with mum and had both scans. Then it was another waiting game for an appointment with Gynaecologist. He rung me after 2 weeks and told me to come down the following day to talk to him and the dialator nurse. They made sure I had been using the dialators properly but then informed me that the operation had not worked and the opening had infact closed up again. So everything I had been through had been for nothing. I was so devastated, I didn't see the point in anything now, everytime I tried it went wrong. My body was determined to cause me misery.
Again I was given the choice of hysterectomy or to re-do the surgery and everytime I had something done it gave me the slightest bit of hope that one day I would be able to become a mummy. So I opted for the surgery again. This time it would be slightly different as I wouldnt be under quite so long, my Gynaecologist could open up what he did previously and insert another stent for another 3 weeks. He organised the surgery and for the second time in 6 months I travelled down to Leeds with my parents to face the operating theatre again.
When I arrived at the hospital I was shown into the same private room that I had had the last time. Mum was given a bed/chair again and it was just like de ja vu. I had to be there again 24 hours before surgery for bowel prep. The surgery lasted 4 hours and I spent 3 days again lay down doing nothing. Due to the amount of time I had spent in there all the nurses felt like friends and would come and sit with me after their shifts had finished and when it was quiet on the wards they would order pizza or chinese in and share it with me. After 7 days I was given a wheelchair again and free run of the hospital and grounds. I even started spending time in the staff room and felt that I could manage a night or 2 on my own without mum so gave her time to herself.
After 23 days the stent was removed and I got sent home again with an appointment to see the Gynaecologist in 6 weeks for a follow up and to hopefully tell him that I had had my first period.
Tuesday, 16 March 2010
My first operation
I had to be at the hospital 24 hours before my surgery to have laxatives to make sure that all my bowels and insides were clear as there was a risk that they might cut my bowel by accident. This stuff was absolutely foul, it was supposed to be lemon flavour but it tasted like hot salty water.
When I got to the hospital I got shown around by the nurses and settled into my own room that was going to be my home for the next 3 weeks. Luckily I got on with all the nurses, and mum was given a foldout bed/chair thing so that she could sleep in my room with me, after all I was only 15, I was nearly 80 miles from home and I was terrified.
I had brought teddies with me, my own pillow, and little bits and bobs to try and make it more homely. I was on a gynaecology ward so the average age on the ward was 40, it was rather daunting. I spent the day before my surgery running back and forth from the toilet, luckily my room was en suite, and painting. It kept me calm. I was only allowed to drink and eat clear foods and liquids so water or squash and bovril and jelly (Yuk!).
The morning of my surgery, my gynaecologist came round to talk to me, reassure me and make sure I understood what was going to happen, I spent most of the morning in tears, I was going to be asleep for at least 6 hours and thats if everything ran smoothly. I was given a pre-med to calm me down. At 9am I was then wheeled down to theatre and put to sleep by 9.45.
I didn't wake up until the next day after that and when I woke up I wasn't allowed to move off my back for 7 days. I wasn't allowed to eat until I could sit up. I had to stay lay down because they had inserted a stent to keep the opening open and that had to be in for 3 weeks but the first 7 days were crucial that I didn't move so that I didn't move anything. I was so thankful mum was with me, I had my own tv, music player and books for company.
When they did eventually move me off my back I had to have physiotherapy because I had spent so long without doing anything my muscles were wasting. I got given a wheelchair on my 13th day so that I could get myself up and about to shower and back and I was told that I could come and go as I pleased as long as I was back for my tablets at certain times so I would wheel myself off the ward and down to the gardens and read there and I spent quite a bit of time in the childrens wards reading to the really poorly little kids.
The day I was due to be sent home, my gynaecologist came to talk to me with a dialator nurse who taught me how to use the dialators and when. They then removed the stent and told me I could go home. It was now a waiting game, wait and see whether I would get my first period, if I did that would mean the operation was a complete success.
When I got to the hospital I got shown around by the nurses and settled into my own room that was going to be my home for the next 3 weeks. Luckily I got on with all the nurses, and mum was given a foldout bed/chair thing so that she could sleep in my room with me, after all I was only 15, I was nearly 80 miles from home and I was terrified.
I had brought teddies with me, my own pillow, and little bits and bobs to try and make it more homely. I was on a gynaecology ward so the average age on the ward was 40, it was rather daunting. I spent the day before my surgery running back and forth from the toilet, luckily my room was en suite, and painting. It kept me calm. I was only allowed to drink and eat clear foods and liquids so water or squash and bovril and jelly (Yuk!).
The morning of my surgery, my gynaecologist came round to talk to me, reassure me and make sure I understood what was going to happen, I spent most of the morning in tears, I was going to be asleep for at least 6 hours and thats if everything ran smoothly. I was given a pre-med to calm me down. At 9am I was then wheeled down to theatre and put to sleep by 9.45.
I didn't wake up until the next day after that and when I woke up I wasn't allowed to move off my back for 7 days. I wasn't allowed to eat until I could sit up. I had to stay lay down because they had inserted a stent to keep the opening open and that had to be in for 3 weeks but the first 7 days were crucial that I didn't move so that I didn't move anything. I was so thankful mum was with me, I had my own tv, music player and books for company.
When they did eventually move me off my back I had to have physiotherapy because I had spent so long without doing anything my muscles were wasting. I got given a wheelchair on my 13th day so that I could get myself up and about to shower and back and I was told that I could come and go as I pleased as long as I was back for my tablets at certain times so I would wheel myself off the ward and down to the gardens and read there and I spent quite a bit of time in the childrens wards reading to the really poorly little kids.
The day I was due to be sent home, my gynaecologist came to talk to me with a dialator nurse who taught me how to use the dialators and when. They then removed the stent and told me I could go home. It was now a waiting game, wait and see whether I would get my first period, if I did that would mean the operation was a complete success.
Monday, 15 March 2010
The choice I made
Well not one to be beaten or to turn down a challenge I opted for the second operation, reconstructive surgery. I was then told that I would have skin grafts taken from my buttocks and thighs, they wouldn't completely remove the skin as that way it still has sensation and they would twist it and push it up thus creating something like a cervix. I was told I would have to use dialators on a daily basis until I started to have an active sex life to make sure the opening didn't close.
The surgery required a team of 4 surgeons, my Gynaecologist, a Cardiologist (Heart Specialist) as I have heart problems from birth, a Plastic Surgeon and a general surgeon. This type of operation was not something that could be planned as an overnight thing, it would take months of what seemed like military precision planning.
I finally got a date through, and had very mixed feelings about it. I was terrified of having to have major surgery. I was terrified because I didn't know what I was going to face afterwards, I didn't know if I was doing this all for nothing, whether it would work even and I was terrified of never finding a man who could put up with something like this. Sex was never going to be easy and having a baby would always be very difficult. I had to give it a shot though otherwise I would be forever wondering what if.
The surgery required a team of 4 surgeons, my Gynaecologist, a Cardiologist (Heart Specialist) as I have heart problems from birth, a Plastic Surgeon and a general surgeon. This type of operation was not something that could be planned as an overnight thing, it would take months of what seemed like military precision planning.
I finally got a date through, and had very mixed feelings about it. I was terrified of having to have major surgery. I was terrified because I didn't know what I was going to face afterwards, I didn't know if I was doing this all for nothing, whether it would work even and I was terrified of never finding a man who could put up with something like this. Sex was never going to be easy and having a baby would always be very difficult. I had to give it a shot though otherwise I would be forever wondering what if.
Sunday, 14 March 2010
Being Diagnosed with Endometriosis
I have suffered from Endometriosis since I was 11 years old, I got diagnosed when I was 14. After being pushed from pillar to post for 3 years by doctors who told me that I was too young for anything to be wrong and that my periods would start soon I finally got referred to a fantastic gynaecologist who scanned my tummy and found cysts on my ovaries.
From there he suggested that he should do a laparoscopy on my tummy to find out what the cysts were. After the laparoscopy I was told that I had the most severe Endometriosis he has seen in his 7 years as a gynaecologist and couldn't believe someone so young could have it so bad.
After that I feel like the 7 years following just snowballed well and truly out of my control. I have literally lost count of the number of operations that I have had.
After the laparoscopy that diagnosed me I had a laparotomy a couple of months later to remove all the endometriosis that my gynaecologist could find. Because of how young I was my Gynaecologist then decided it would be better for me to see an Adolescent Gynaecologist. So from then on for every appointment or scan that I had to have I had to make the 2 and a half hour journey to Leeds General Infirmary.
My first meeting in Leeds consisted of meeting my new Gynaecologist and a couple of nurses that work closely with him. I had an MRI scan that showed up that something wasn't right and I was then told that I had been born without a cervix. This condition is called MRKH or Mayer-Rokitansky-Kuster-Hauser syndrom however I did not find out the name of this until I was 22. Because I was born without a cervix my periods had nowhere to go so it went back up my fallopian tubes and caused cysts and adhesions. I then was given 2 choices, I could either have a hysterectomy or I could have reconstructive surgery, surgeons would create an opening in my womb in the hope that I would have normal periods.
From there he suggested that he should do a laparoscopy on my tummy to find out what the cysts were. After the laparoscopy I was told that I had the most severe Endometriosis he has seen in his 7 years as a gynaecologist and couldn't believe someone so young could have it so bad.
After that I feel like the 7 years following just snowballed well and truly out of my control. I have literally lost count of the number of operations that I have had.
After the laparoscopy that diagnosed me I had a laparotomy a couple of months later to remove all the endometriosis that my gynaecologist could find. Because of how young I was my Gynaecologist then decided it would be better for me to see an Adolescent Gynaecologist. So from then on for every appointment or scan that I had to have I had to make the 2 and a half hour journey to Leeds General Infirmary.
My first meeting in Leeds consisted of meeting my new Gynaecologist and a couple of nurses that work closely with him. I had an MRI scan that showed up that something wasn't right and I was then told that I had been born without a cervix. This condition is called MRKH or Mayer-Rokitansky-Kuster-Hauser syndrom however I did not find out the name of this until I was 22. Because I was born without a cervix my periods had nowhere to go so it went back up my fallopian tubes and caused cysts and adhesions. I then was given 2 choices, I could either have a hysterectomy or I could have reconstructive surgery, surgeons would create an opening in my womb in the hope that I would have normal periods.
Saturday, 13 March 2010
Medical Jargon - Endometriosis
Endometriosis (End-oh-meet-rio-sis) is a condition where the cells that line the womb are found elsewhere in the body.
Every month your ovaries release an egg which travels down the fallopian tubes and if you do not fall pregnant that month the egg is released from the body with your period which is the lining of the womb.
Endometriosis cells behave in the same way as the lining of the womb, where every month they will bleed and because they are not in your womb they bleed internally.
This causes pain, inflammation and scar tissue also known as adhesions. Endometriosis can be found inside of the Ovaries usually made up of what are called chocolate cysts because of their appearance.
I must state that:
* Endometriosis is NOT a disease
* Endometriosis is NOT contagious
* Endometriosis is NOT cancer
Endometriosis is usually found in the pelvis area, around the ovaries, on and in the fallopian tubes, on the outside of the womb or the area between the rectum and the womb. It is also found on the bladder, bowel, vagina, rectum, intestines, diaphragm.
You can also get adenomyosis which is where the endometriosis is found in the muscle layer of the womb.
It has also been found in the eye, brain, skin, spine and lungs but I must stress this is VERY rare.
Endometriosis is a chronic and debilitating condition which affects 1 in 10 women, approximately 2 million women in the UK alone.
Endometriosis can change and affect womens life by causing:
* Chronic pain
* Lack of energy
* Depression
* Problems with sex
* Infertility
* It can also make social and work lifes very difficult.
Doctors still have no idea what causes Endometriosis.
http://www.endometriosis-uk.org/information.html
Every month your ovaries release an egg which travels down the fallopian tubes and if you do not fall pregnant that month the egg is released from the body with your period which is the lining of the womb.
Endometriosis cells behave in the same way as the lining of the womb, where every month they will bleed and because they are not in your womb they bleed internally.
This causes pain, inflammation and scar tissue also known as adhesions. Endometriosis can be found inside of the Ovaries usually made up of what are called chocolate cysts because of their appearance.
I must state that:
* Endometriosis is NOT a disease
* Endometriosis is NOT contagious
* Endometriosis is NOT cancer
Endometriosis is usually found in the pelvis area, around the ovaries, on and in the fallopian tubes, on the outside of the womb or the area between the rectum and the womb. It is also found on the bladder, bowel, vagina, rectum, intestines, diaphragm.
You can also get adenomyosis which is where the endometriosis is found in the muscle layer of the womb.
It has also been found in the eye, brain, skin, spine and lungs but I must stress this is VERY rare.
Endometriosis is a chronic and debilitating condition which affects 1 in 10 women, approximately 2 million women in the UK alone.
Endometriosis can change and affect womens life by causing:
* Chronic pain
* Lack of energy
* Depression
* Problems with sex
* Infertility
* It can also make social and work lifes very difficult.
Doctors still have no idea what causes Endometriosis.
http://www.endometriosis-uk.org/information.html
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