I am a total loss to explain this, and my gynae couldn't either, but the scan today is totally clear - e.g. no organs stuck, both ovaries free, no nodules of stuff, just fibroids! Generally endo has never shown itself on scans before, so he doesn't know what went on in August. The scan person said that the ovaries can move and that it has freed itself since that time.
The outcome is I am not having surgery - Mr C didn't feel it was worth going in again and then we create yet more scarring. Since apart from whatever happened in August, and last December (possible failure of one injection), I have not had pelvic pain on the scale I do when menstruating. So I am going to now remain on Zoladex with a double-dose of HRT to help the bone density issue. He is obtaining permission to keep me on this regime from Rheumatology, Mr C is happy, and I remain in this (reversible) menopausal state indefinitely. The advantage about this is that it has generally been a very good outcome for me 85% of the time (marring 2 blips) and then I still retain my organs just in case I ever need them(!)
I am aware that there is still something going on in the left area of my pelvis - but even if they did surgery I imagine it could have still remained. I obviously have the right to seek a second opinion, and it was the opinion of the gynae I saw in Augst that I should have a total hysterectomy. For now though I will happily stay on the Zoladex and look to see how else other changes that are going on in my body also affect this area. I imagine there is still endometriosis left, but it is largely inactive owing to the Zoladex, and it is hard to say what is still causing some pain. I am used to being "in some pain" almost every day, but it is knowing when I need to take further action. Of course, the other thing is that it is not a gynae issue causing the pain and it is bowel related - but again, there will probably be no abnormally found. In August they were going to look into this - but felt there were other more pressing issues. I think that even if I get pain, unless it is very severe aka August episodes, I have to otherwise treat it as a chronic pain flare up and manage it accordingly. However, I am still finding the results of the scans difficult to understand or explain. How can so much have changed in such a short time?
We'll see how things go and of course if the area has a major flare up again, I will seek appropriate advice. If it keeps happening then the doctors will need to think again. Given that it generally hasn't is a positive sign that the Zoladex is usually working well. It is only a mask though and does only hold back what is going on. I am glad not to be having yet another laparoscopy just for them to find something minor and stitch me up again. For now though, Mr C has discharged me, but I can go straight back again if need be.
Thursday, November 11, 2010
Sunday, October 24, 2010
Hospital Update - 21-10-2010
Bone Density - hip result was poor and had gone down more. Spine had not declined any further.
Gynae:
They had lost my notes!!! The consultant had no other record of my surgery and was not prepared to go purely on my report fro my August scan report or my subjective report about how things had been lately. He wants me to be re-scanned by his 'Scan man' and this will now take place on Thursday 11th November. My consultant,has said I cannot continue with zoladex. He now needs me to double my HRT because of the bone density result today. I have had my last injection, and that might be the end of it now. This is rather terrible because the wait for surgery is 4-6 months and now he is back to saying they want to do "another" diagnostic laparoscopy (pending the scan result) and then he "might" go in and remove more endometriosis. Depending on the state of things, he would then wake me up from anaesthesisa and then decide to continue to remove more, particularly left ovary and fallopian tube, or again depending on diagnostic scan/laparaoscopy if they believe it is the right thing to do, then they will probably consider total hysterectomy. He is still reluctant to take this step now in case this does not solve the problem. This was my anxiety too. We have agreed that thus far the Zoladex has given me a very good quality of life, until very recently. I suggested that the recent episode is linking with my bowel and that it is possibly trapping the ovary constantly if as the August scan shows, my left ovary is stuck to the pelvic wall and anterior uterus. I said that the left side is the most troublesome in all aspects at the moment (musculoskeletal) etc. They are aware of my HMS/FM situation. They are also aware of how much better I looked and weight-loss etc (I was 90kg when they operated in 2007). I said how much I had achieved since that time, and how generally well I had been.
Anyway - I feel that this is quite tricky. If I had my last injection today, my cycle will start again within 6-10 weeks. I might beg him if I can remain on it until they do surgery, but on the other hand, it might be good for the endo to create more havoc because I had been on zoladex a long time when I had the last surgery, and I think he only removed scar tissue, not active stuff. I could be wrong.
I would like to be positive about this, but am finding it hard to find anything positive because I could be waiting until March before they do anything surgical and there is still no certaintly about a good and final outcome. I think i just wanted him to say yes, he can remove everything and it will all go away!!! Perhaps this is is enough information for now and we'll see what he says on 11th November. Either way we need a quick result on this.
Gynae:
They had lost my notes!!! The consultant had no other record of my surgery and was not prepared to go purely on my report fro my August scan report or my subjective report about how things had been lately. He wants me to be re-scanned by his 'Scan man' and this will now take place on Thursday 11th November. My consultant,has said I cannot continue with zoladex. He now needs me to double my HRT because of the bone density result today. I have had my last injection, and that might be the end of it now. This is rather terrible because the wait for surgery is 4-6 months and now he is back to saying they want to do "another" diagnostic laparoscopy (pending the scan result) and then he "might" go in and remove more endometriosis. Depending on the state of things, he would then wake me up from anaesthesisa and then decide to continue to remove more, particularly left ovary and fallopian tube, or again depending on diagnostic scan/laparaoscopy if they believe it is the right thing to do, then they will probably consider total hysterectomy. He is still reluctant to take this step now in case this does not solve the problem. This was my anxiety too. We have agreed that thus far the Zoladex has given me a very good quality of life, until very recently. I suggested that the recent episode is linking with my bowel and that it is possibly trapping the ovary constantly if as the August scan shows, my left ovary is stuck to the pelvic wall and anterior uterus. I said that the left side is the most troublesome in all aspects at the moment (musculoskeletal) etc. They are aware of my HMS/FM situation. They are also aware of how much better I looked and weight-loss etc (I was 90kg when they operated in 2007). I said how much I had achieved since that time, and how generally well I had been.
Anyway - I feel that this is quite tricky. If I had my last injection today, my cycle will start again within 6-10 weeks. I might beg him if I can remain on it until they do surgery, but on the other hand, it might be good for the endo to create more havoc because I had been on zoladex a long time when I had the last surgery, and I think he only removed scar tissue, not active stuff. I could be wrong.
I would like to be positive about this, but am finding it hard to find anything positive because I could be waiting until March before they do anything surgical and there is still no certaintly about a good and final outcome. I think i just wanted him to say yes, he can remove everything and it will all go away!!! Perhaps this is is enough information for now and we'll see what he says on 11th November. Either way we need a quick result on this.
Tuesday, September 21, 2010
More Endometriosis and adhesions found
On or around 20th August I started to have some problems with my guts - I suppose IBS symptoms. On Monday 23rd August, following my Zoladex injection, I came home and following a bowel movement started to have very severe pain in my left iliac fossa. Not sure 'exactly' what it was, I called to speak to my GP who had only seen me a few hours ago. With my history he decided I should go to A&E in case of acute abdo or an ovarian cyst. He kindly faxed my local A&E and off I went.
After what seemed a very long wait, which probably wasn't, I was seen and given some painkillers. I was kicking myself for not having taken more oramorph before I went. Eventually I was finally given some morphine and then the lights went out!
I was then transferred to a Medical Admissions Unit (or 'Cant' decide Unit) and given anti-sickness and then was very sick - mainly of water as that was all I had consumed in hours. I was kept in all day and then admitted to the gynae ward on the Tuesday evening. I slept well on Tuesday night and then on Wednesday had a transvaginal scan which showed fairly widespread endometriosis and adhesions, which was strange given I have been on zoladex for two years. It even showed I had a fairly thick uterine womb-lining, which again is an unexpected find. Worse was that the left ovary is tethered to the left pelvic wall and the anterior surface of the uterus. The uterus is stuck down on the pouch of douglas and there was a large nodule of endo in the vagina and a uterine fibroid for good measure. The right ovary appears reasonably OK.
I was kept in overnight on Wednesday and then taken for a kidney scan the next day which was normal. I cried my eyes out though because the pain of having a full bladder was agony for me - I had already had several days of pain in that area. My guts remained stagnant and also were painful. This is all typical of me with endo flare-ups.
The hospital at were suggesting hysterectomy. I am having a big review in October. Looks like a new blog might start then!
After what seemed a very long wait, which probably wasn't, I was seen and given some painkillers. I was kicking myself for not having taken more oramorph before I went. Eventually I was finally given some morphine and then the lights went out!
I was then transferred to a Medical Admissions Unit (or 'Cant' decide Unit) and given anti-sickness and then was very sick - mainly of water as that was all I had consumed in hours. I was kept in all day and then admitted to the gynae ward on the Tuesday evening. I slept well on Tuesday night and then on Wednesday had a transvaginal scan which showed fairly widespread endometriosis and adhesions, which was strange given I have been on zoladex for two years. It even showed I had a fairly thick uterine womb-lining, which again is an unexpected find. Worse was that the left ovary is tethered to the left pelvic wall and the anterior surface of the uterus. The uterus is stuck down on the pouch of douglas and there was a large nodule of endo in the vagina and a uterine fibroid for good measure. The right ovary appears reasonably OK.
I was kept in overnight on Wednesday and then taken for a kidney scan the next day which was normal. I cried my eyes out though because the pain of having a full bladder was agony for me - I had already had several days of pain in that area. My guts remained stagnant and also were painful. This is all typical of me with endo flare-ups.
The hospital at were suggesting hysterectomy. I am having a big review in October. Looks like a new blog might start then!
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