Adenomyosis - My story from start to almost finnish

Hi, 

If your reading my blog it is likely that you have also been told you have this condition.  I have researched the internet and found that there doesn't seem to be enough information on how people actually feel and the pain people actually go through with regards to this condition, so have decided to start up a blog with my feelings and the pain I actually endure with it.  I was first diagnosed with Adenomyosis when I went in for a Laparoscopy in May 2010.

How the problems all started

I had been suffering for years with painful periods, and had had trouble conceiving.  I originally had 2 Laparoscopy's prior to that in 2004 and 2005 where it had been found that I had Endometriosis, which is another painful condition to endure, after the first Laparoscopy in 2004 they had told me they had managed to Laser the Endometriosis off, and that conceiving shouldn't be a problem, but nearly a year went by and I was no nearer to conceiving, so this time I went private and had another Laparoscopy done, the Consultant was wonderful, however, she did have to deliver the news to me that it would be unlikely that I would be able to conceive naturally without the help of IVF, a devastating blow, and one that had left me heartbroken as I so badly wanted children.  The result of this put alot of pressure on my relationship and me and my boyfriend eventually went our separate ways.  

A few months later I did eventually meet somebody else, and I have no idea how, but somebody up there must have been watching out for me and low and behold for the first time ever in my life at the age of 32 I fell pregnant, to say I was estatic was an understatement, my new partner wasn't so enthusiastic, as he already had a daughter of 4 from a previous marriage, but nevertheless he said he would stand by me, needless to say that didn't actually happen and we split up when I was 4 months pregnant.   I never forget when I told my Mum was pregnant, by telephone which wasn't the wisest thing to do, her reply was "I need to think about this and will call you later", my Mum later told me her reaction to this was to do with the fact that she herself had also come round to the idea that she was never going to be a grandmother, (I am an only child) so it was quite a shock to all of a sudden be told that she was finally going to be a Grandmother, and she was as estatic as I was.

The pregnancy was a nightmare to say the least, I was sick everyday from 5 weeks pregnant, up until right near the time, I had my daughter.  It was terrible sometimes I even had to pull over in the car to be sick, I used to think (in the early days before I showed) that anyone that saw me getting out of the car and being sick must have thought I was drunk.  I am so suprised that I never got stopped by the police!

I went over my due date as the baby hadn't really dropped at all, as everyone kept telling me, I was due on the 11/4/2006 and 2 weeks later on the 25/4/2006 I had to go into hospital to be induced, they started me off at 11pm and by 2am I was up walking the corridors and pressing the alarm asking for pain killers and meds as the pain was so bad, but they didn't give me anything, as I was told I would have to wait until the doctor did his rounds in the morning!!  Arrrgghh!  At 6am the doctor finally came in and was shocked that I had been up all night so they gave me Pethadine which sent me off to sleep until 12pm when the pains started getting bad, I had only dilated up to 4.5cms but they sent me down to the delivery suite anyway, ages went by and I was getting the contractions and was on the gas and air, which I have to say I loved, they told me I only needed it when the contractions came, but I was in my own little world and was taking it as and when required.  They broke my waters which is painful, and they had also put metal clips onto my daughters head to monitor her, as they said she was getting quite distressed, they had to put 3 different lots of clips on her as they all kept breaking.  I then had the Epidural, ooh the pain, but have to be honest by that stage I was so exhausted that I was ready to take any pain killer they could give me.  The next thing I remember was that I had about 6 people come in the room, who said "we're in here because of that" I still didn't have a clue what that was at the time but my Mum had seen it on the screen and knew straight away, my daughters heartbeat had dropped down to 50 so they were sending me down for a Caesaran.  I was absolutely distraught at this stage, I didn't want a Caesaran and was petrified, I remember them wheeling me down the corridor and crying saying how I didn't want one but I had no choice, they knocked me out completely to do it, as I was so distressed.  I didn't know at the time, but my Mum was outside the room in tears on the phone to my Stepmum, as I was losing so much blood that they didn't think either of us was going to make it.  Scary stuff!  The next thing I remember was coming round and my Mum holding up my daughter, trying to show her to me, which I couldn't see properly as I still had the oxygen mask on, I kept trying to pull it off but they wouldn't let me, they had to take my daughter away from me that night, as she was a bit drowsy from all the drugs I had been given, and I wasn't able to move from the caesaran.  So my daughters first night in the world was spent apart from me, but she was delivered at a healthy 7lb 15oz at 10pm on the 26/4/2006

The next day I was wheeled down to collect my daughter and I was up moving around, abeit it slowly, and I was allowed to keep her with me.  The Consultant came round to see me and told me they didn't know why I had had to have a caesaran other than my daughter couldn't manage to get out and was getting distressed, so that was the only option, but they also told me why they couldn't see any reason that I couldn't have a normal delivery next time.  However, I have since found out since being diagnosed with Adenomyosis that this is one of the problems, it makes it hard and virtually impossible for you to have a normal delivery,  had they of known I had this they could of then made the preparations for me to have a Caesaran rather than trying to get me to have a normal delivery.

I stayed in hospital for a week and was then allowed to go home, my Mum came to stay with me as well, as although I was moving around it was still hard, and I had an endless stream of visitors all coming up to see my daughter.  Three days later, I started shivering I couldn't get warm and couldn't even hold my daughter as I was shaking so much, absolutely nothing could warm me up, my Mum ran me a hot bath as I freezing, even made me a cup of hot sugary tea as I was in the bath, as she thought maybe I had gone into shock, nope nothing worked, I got into bed with pyjamas, tracksuit bottoms, 3 tops and 2 pairs of socks and I was still shivering, so Mum called the hospital and they told her to bring me straight in, so in we all went again back down to the hospital, where they admitted me straight away and put me on an IV drip, my Mum had to take my daughter home and look after her as I was too weak to do anything, I was on the IV drip for 2 days, then they put me on oral antibiotics but I still had to stay in, but they did allow me to keep my daughter with me then, which is not normally the norm but they put me back on the maternity suite and gave us a private room.  They told me I had come down with Pregnancy Fever, however, I have searched on the internet and cannot find anything called Pregnancy Fever, all the sites seem to say it is caused by an infection usually from the hospital, which maybe explains why I was treated to my own private room and was allowed to keep my baby with me.  A week later I was allowed home.

Over the next three years my period pains became gradually worse, one day I was even admitted to A&E as I could hardly walk and given every test going then eventually given pain killers and told to see my GP as it would be best for me to see a Specialist, which I did. 

I went and had the various tests they do, and they agreed I would have to go in for another Laparoscopy, they also told me at the time that they felt it was affecting my bowel and to be prepared to wake up with a bag after the Operation, they said this would be reversed a few months after the operation, this scared me more than the Operation itself, but it was the only way to get rid of the pain, and at the time I was willing to do anything to get rid of this pain, so the Operation went ahead in May 2010.

I came round and saw the Consultant, the first thing I checked was that I didn't have a bag attached, and thankfully I didn't, however, the Consultant did tell me they had found I had a Condition called Adenomyosis and that was the reason for all the pain, it basically makes your womb bulky, its as if it is still in a pregnancy state. The only thing that would remove the pain completely would be a Hysterectomy, they could treat it with medicine, but the pain will gradually get worse over the years, until my only option would be a Hysterectomy.

I am now at the point where the pain has got so intense and it is affecting my day to day life, some days I wake up and can hardly walk, and have a constant pain in my right side by my groin,  the pain is intense and it is also not only when my period is due that I get this pain, it can carry on throughout the month, periods are longer than usual, and you loose alot of blood.  A result of which has caused me to get very tired, and have prolonged headaches, having had blood tests I now know that this is down to Anaemia, which has been brought on by this condition, so as well as taking painkillers Tramadol and Naproxen, I am also on two Ferrous Sulphate Iron tablets a day, it is a slow process but I am gradually getting some of my energy back. I also suffer with Reflux acid which is all connected so am now on more tablets for that and I am still off work and will be until my Iron levels get back up to as near to normal as possible, and am waiting to go and see the Consultant, and decide if a Hysterectomy is the next stage for me. 

So the symptoms you get from this condition can be quite random, it is also very depressing, I long for the day when I can wake up without an ailment and feel normal again.

I have researched on the Internet and have found that there is a new procedure that is being done in Japan and America called the Osada Procedure, where they actually shave your womb to allieviate the pain caused by Adenomyosis, but I am not sure that procedure is easily available here yet.  But I will be asking my Consultant about it when I see him.

In an ideal world I would of liked to have had more children, and the Osada procedure is my last chance of this being able to happen, however, if its not to be its not to be, I will just be grateful that I at least managed to have my wonderful daughter, whom life would not be complete without.  I do find it upsetting and hard seeing friends that have gone on to have their second babies, as this is very unlikely to happen for me.

Unfortunately, I don't think people know enough about this condition and I think people need to be educated on how it does affect us sufferers, but hopefully my writing this blog and people reading it, I would have gone a step closer to it.