Friday, November 23, 2007
Since then, definitely had a period at the time the coil was removed - bled very heavily etc. Still in pain etc etc etc.
I really wanted to just return to Zoladex + Tibolone which has always worked for me. However, consultant wants me to have a few periods to see what has been achieved since the surgery. They will then organise for a bone density scan in March/April 08 and then I'll be seen in clinic in May.
If at that point things are still really bad, it looks like I will be able to return to long-term zoladex if my bone density is OK.
In the interim - got to have periods. The endo nurse said to let her know how my next one goes.
They have said I can contact them again if things get dire/see GP etc.
Really not sure how I feel about this - I think there is now a fear element behind having periods having had such painful periods for years and years, which cannot be helping me. Added to which the first post-lap period is always nasty, plus I was very unlucky with my Mirena. He asked me if I wanted another one... DUH - I think not!!
Friday, November 16, 2007
Friday, November 9, 2007
I am presently having a lot of trouble convincing my hospital consultant that when I do have periods I become very unwell; in a great deal of pain, can't work, can't do anything social, unreliable, very depressed etc. When my periods are stopped I can work and live properly etc, am reliable, am happy etc etc etc. You have all seen me in both capacities.
I am proposing to take supporting statements to my GP (initially) and then to hospital when I go back in 2 weeks time.
I think I asked some people to do this a year or so ago, but have lost the email.... (sorry).
Please could you all write something for me (it doesn't need to be very long) supporting my case. Please feel free to give any examples you need/want. Address it 'To Whom it may concern'
I would be really grateful if you could do this fairly quickly for me.
Many, many thanks,
TO WHOM IT MAY CONCERN
I first met MizzK nine months ago, when she applied for the post of Volunteer Coordinator with the charity A2A. As a Trustee of the charity, I was on the interviewing panel. She impressed us with her creative and dynamic approach to the post, which she immediately upon her appointment, set about implementing.
As I have come to know MizzK better, I have discovered some of her many other creative sides and continue to be impressed with the energy, both mental and physical, which she gives to everything she undertakes.
However, since Mizzk most recent operation for endometriosis, I have become increasingly concerned about the effect of her periods on her ability to manage her very full and active life on a day-to-day basis. This lifestyle only became possible when her previous medication allowed her complete freedom from pain for the first time in her adult life. I know she is pushing herself to the limit in order to keep up with her work commitments, but the stress and anxiety of knowing that she will be in severe pain for two out of every four weeks of her like for the foreseeable future, must be very hard to cope with.
I did my best though to overcome this through doing some ballet, and then I had my writing class, and just felt quiet and very flat.
I was going to shirk going to a concert I had paid for this evening, but since it was some of my favourite music, (Bach Violin Concertos), I pushed myself into going. The church and the music were beautiful, but the tears were streaming down my face. In addition to that, the pain had come back somewhat, so there were tears being shed not only for feeling sad, but because my tummy hurt again.
I have come back to a lovely response to my 'evidence-based' medicine and request for support from close friends and family as to how I am with/without endometriosis. I am going to post these on this Blog.
Thursday, November 8, 2007
He said that, 'I no longer have endometriosis' because he removed everything in September, and that if I am in pain now, there is another cause. We talked some more and I said well, how come I am fine when I am on Zoladex and my periods are stopped? He said I couldn't keep taking that because my bone density was low. Then we talked about the Mirena which he had put in at the time of the lap.
I was so upset by this point that I asked if I could continue the consultation only when a very close friend of mine arrived.
I was crying my eyes out in reception in so much pain, so they took me to a consultation room, and eventually my friend arrived. They asked if I would like to have the Mirena removed, to which I replied, 'yes'.
When it came to taking it out the most painful bit was having the speculum put in place. As it turned out, the Mirena had come out of place and was in my upper vagina, and no longer in the uterus at all, and it appeared (as my GP thought) that my body had been rejecting it all this time, which explains the very severe pain I have been having.
When the consultant came back in, my friend was brilliant and was saying how poorly I was and she has often seen me like this, but also seen me really well, when on Zoladex.
Consultant wants me to be seen by pain management - which I have done three times over in other hospitals, so I feel it is a complete and utter waste of time.
Anyway for now, the upshot is he thinks my pain should really settle down (again) now the Mirena is out, and I might be OK. I am being reviewed again in 2 weeks by the endo nurse when I am going to ask to have my bone density re-tested, otherwise I am going to have to consider moving consultants again.
I am supposed to be with a good team - but to be honest, they cannot leave me to live like this as I have no quality of life. If he does, there is no point at all in going on.
Anyway, sorry for the rant. I am utterly exhausted now and in less pain than earlier, so going to have a bath and go to bed.
Wednesday, November 7, 2007
I saw my GP yesterday who kindly prescribed me Oramorph (a liquid form of Morphine), but she shouldn't be doing this because I really shouldn't be in that much pain. This is not a long-term treatment solution.
My GP thinks that my body is desperately trying to reject the Mirena coil which explains the muscle spams and the particular tenderness in the area.
I am now being seen at hospital tomorrow instead of 6th December. I want the Mirena removed and either to return to Zoladex again, or to be reconsidered for a hysterectomy.
One piece of good news is that I have lost some weight - 4kg last week, and I think some more this week. My target weight is 70kg.
Friday, November 2, 2007
Firstly I have had breast pain for the past two weeks and then back/pelvic/'period' pain since Wednesday. So far I have had very little bleeding, but the pain is just awful and is going down my inner thighs and into my inguinal ligament.
I seriously cannot take this for much longer and not for another 20 years. It looks like I am going to be begging my consultant to go back on Zoladex when I see him.