I decided it was time to my blog something that seems to unfortunately evolving into an ever-growing part of my life.
My plan is to add to the theory of the condition (below) over coming months with some insights to my own experience, you never know it might be helpful information to someone. To make things easier I will group all posts related to this within the category of ‘Adenomyosis’ so it should be easy to search for them should you wish to.
Part 1 – The science bit
Over the last 2.5 years I have spent a lot of time looking on the internet to find women with a similar condition to me, looking for something to provide some reassurance or comfort. Most of the time I have found a little of what I have been in search of but there isn’t actually that much information out there, so I wanted to do what little I could to help. You never know someone might stumble across my little blog looking for some reassurance too and just maybe I will be able to help someone in return for the support I have found.
Now if you happen to be a male reader you might not want to read any further…I have to say this area of my blog is even more girly then the standard stuff…haha. Sorry to any subscribers of my blog who have no interest in this stuff.
I think its worth starting with a definition;
“Adenomyosis – is a disorder where the endometrial tissue lining the walls of the uterus exists inside and grows into the muscles of the walls of the uterus. This disorder occurs mostly in the late stages of the childbearing years as well as after the woman has had children. What causes adenomyosis is not known, but the illness normally vanishes after a woman is in post-menopause. For those women who have the more severe pain from this disease, there are opportunities for treatments which may help but the only total cure is to have a hysterectomy. “
* Prolonged as well as heavy menstrual bleeding
* Piercing, scalpel-like pain in the pelvis as well as severe cramping.
* Cramps which last thru out the period .
* Pain while having intercourse.
* Passing clots of blood during the period.
* Sciatic nerve pain
* Bleeding in between monthly periods.
* The uterus can increase to almost double or even triple its regular size.
Part 2 – Whistle stop tour though my story so far…
To start here is the summary version of how I was diagnosed and where I am in my journey so far.
* January 2010 started with Pelvic pain
* For several months this was treated with strong painkillers and to be honest I don’t recall too many details of that time
* By the summer I had undergone several tests to see if it was related to my Coeliac disease and an issue with digestive system. Every test came back clear …still not idea of what was causing the pain.
* In the July I ended up being taken into hospital with server pelvic pain and ended up spending a week in hospital mainly so that I could have pain medication that even eased the situation. During this time in hospital they decided it couldn’t be related to my stomach and I was discharged from my consultant.
* Thought-out the autumn and into the winter I coped by taking a lot of painkillers and anti-inflammatory tables, nights in on the sofa, weekends staying in bed and waved good-bye to my social life. Then one day my GP decided it was time to refer me to another specialist, it was going to take 16 weeks unless I was willing to go private. At this point I had been suffering for nearly a year so I was willing to try anything to get my life back.
* The new speciality suggested repeating some of the same test (more ultrasounds, bloods etc) and a laparoscopy (type of surgical procedure that allows the surgeon to access the inside of the abdomen and pelvis). Having never had surgery before I was a little nervous but keen to find an answer to my pain I was happy to proceed. So finally in January 2011 this took place.
* My surgeon had expected to find endometriosis but found none of this. Instead he consulted ‘ expected Adenomyosis’.
* Treatment for this was a different cocktail of painkillers, and fitting a Mirena IUS. I was sent away in the hope this would sort everything out over the next couple of months.
* Suprise surprise it didn’t resolve all my problems. While it had resolved some symptoms it made little impact on the pain. Before long I was back in the doctors office next to try 6 months of back to back birth control pills.
* Although this treatment was unsuccessful in the longer term it did provide me with a couple of months of lighter pain during the summer of 2011. This was a huge relief as I was growing very tired of the situation.
* By Christmas my consultant advised a repeat of my ultrasounds and more distressingly a repeat of the laparoscopy (the experience of this is worthly of a blog post in itself and one for another day).
* This time my consultant was more certain that my condition was Adenomyosis and after the surgery confirmed there was nothing else he could do for me if I still wanted to have children. The only treatment he has left for me was a hysterectomy. Now while I really want to get rid of the pain I am 28 single and do want children so this was not an option.
* Therefore it was time for a second option…my new consultant received all my notes but not the diagnosis from the previous doctor. This was intentional to ensure he came to his own conclusions…the results were the same; Adenomyosis.
* However my new consultant did give me some hope. He suggested trying Prostap known as a gonadorelin (LHRH) analogue. I was allowed only a 6 month cause after there is a risk to your bone density as the decrease that occurs within 6 months is fine and can be repaired by ofter 6 months there is a risk is cannot be reversed. In short the injection (1 every 3 months) creates a chemical menopause. Month 1 – bad, Month 2-3 = good!!!, month 4- 5 = bad, month 6 = horrid!
* That brings us up to date..current taking lots of pain killers, getting little sleep, 5 doctors appointments in a period of 3 weeks and back at the hospital next week! Fingers crossed for a new idea???
I hope the above is useful to even person, if anyone has any questions please feel free to ask and I will answer honestly.