Saturday, July 28, 2007

My history

I was diagnosed with endometriosis over ten years ago, although I strongly suspect that I have had it for much longer than that. My periods were painful right from the start, and over the years I have tried many treatments including The Pill, (including combining pill packets to stop my periods), Progesterone-only tablets, diet (wheat-free), Complementary therapies, with some degree of success; therapies have included Osteopathy, Chiropractic, Accpuncture, Reflexology, Herbal Medicine, Homeopathy and Bowen Technique.

I have already had three laparoscopies, where progressively more endometriosis was found, including 'endometriotic spots on my bladder' in 2002.

Since 2002, I have been on the treatment of Zoladex, given by monthly injection to completely stop my periods, along with Livial HRT which helps with the menopausal symptoms of the zoladex. For more information about this type of treatment, visit: http://www.ukmicentral.nhs.uk/guide/pdf/lhrh.pdf

This treatment, which has been given to me in six and twelve month stints, on and off over the past four years has been extremely successful, but because I have had a lot of it, my bone density is now dropping. This is one of the side-effects of the treatment, but I have had a lot more of this treatment than some women, (through my own personal choice), so now it is time to stop this treatment and do something else.

The last time I had a period was just over a year ago, and my pain was so bad I required two in-patient admissions to hospital, and even needed morphine for pain relief. Unfortunately my story is not uncommon. My periods had also become much heavier, and I had a great deal of trouble passing urine during my period, and been bleeding from my bowels. Again, some women also suffer from these particular symptoms; everybody is slightly different. When I was put back on Zoladex again, a ultrasound scan revealed that I also had small Fibroids and Polycystic Ovaries.

For information about Fibroids see http://www.womenshealthlondon.org.uk/leaflets/fibroids/fibroids.html
For information about PCOS see:
http://www.netdoctor.co.uk/womenshealth/facts/pcos.htm

Earlier this year I changed hospitals, and am now seeing a recognized Endometriosis specialist who is going to perform my next laparoscopy on Tuesday 4 September 2007.

This time, I am going to have my endometriosis lasered and cut away from not only my reproductive organs, but also from my bladder and bowel, so in a way this surgery will be more major. If needs be, they will have to do a laparotomy (whole bikini line cut) if they are not able to access and treat everything with keyhole surgery.

At the end of the surgery, they will also insert a Mirena Coil, which has apparently been very successful in the symptom and pain management of endometriosis. More information about that can be found at http://www.mirena-us.com/index.html?c=S1&WT.srch=1

At the moment, I am feeling very unsure about this next phase of treatment - I would love to stay on the Zoladex regime, but I understand that at the moment it is not advisable for me to continue with this forever. I am also anxious about this next surgery, which will be bigger and more 'major' that what I have had done so far. Most of all, I am very frightened about a return of the pain and all the 'endo-related' symptoms.

The Endometriosis UK 'Chatboard' has been a lifeline, and people are amazingly supportive, even though they are going through their own tough times. See
http://p197.ezboard.com/bendoboard

I have chosen to write this story so that other women can follow my journey and add their own feedback along the way.

For those of you who don't yet know much about endometriosis, remember that this is just my particular journey with it, and that everyone is different. I am hoping that there will be lots that is positive to post on here, as well as some of the less good aspects - e.g. post-operative pain etc.

There are things that I think I can be responsible for too. For example, looking at my diet. Wheat-free or low-wheat diet was good for me before. Maybe now it is time to look at doing this again. I can also help myself by trying to exercise when I can, as much as I can - especially whilst I am well. I can also help myself by continuing to have some Complementary Health treatments that have been beneficial in the past - e.g. Bowen Therapy and Herbal Medicine.

I also know that my own attitude towards the next treatment will need to remain as positive as possible - this will not be easy for a person who suffers from depression and low-mood swings as it is. I have a good support network of friends and family, and I will really need to tap into those now to get me through the surgery and subsequent recovery.

No comments: