Wednesday, July 10, 2013

New Scan Update

I had a gynae appointment last Thursday 4th July 2013 and had to have a new scan to assess the state of things. The scan outcome showed 2 small fibroids and that the left ovary was adhesed to the uterus (Pouch of Douglas) and bowel. This was also a finding in 2010. It does tally with the remaining pain in the left illiac fossa and what I thought was a bowel problem is probably caused by these adhesions, as they pull things round.

My gynaecologist recommended the following potential courses of action:
  1. Laparoscopy to remove the left ovary and adhesions, but would still mean I had to continue with Zoladex injections + HRT.
  2. Remove both ovaries and tie both tubes, remove adhesions, this would mean I had a menopause but would need to continue with HRT for another ten years or so
  3. Remain on Zoladex + HRT indefinitely until natural menopause.

I was not happy with this as he did not seem to want to do a hysterectomy because of potential bowel or bladder damage. However, upon seeing my GP today, she supports the decision for a hysterectomy and says that I cannot carry on with Zoladex indefinitely which is only actually licensed for 6 months and I have now been on for 5 years. Although a bone density scan has been ordered to check the state of my bones, my GP has agreed to send me to a different consultant for a second opinion. In the meantime I am asking other doctors/physios/therapists who have been involved in my care over the years to offer their support/advice/suggestions. I am faced with a big decision..... I also have my Ehlers-Danlos (Type III) Hypermobility Syndrome to consider. 

Saturday, March 17, 2012

Bone Density Result

I had a Dexa Bone Density Scan in February 2012 and the results are good and show my bone density is still within the normal range and not declined. I think this is in part due to more weight bearing exercise and a high calcium diet as at some points I had been osteopenic. I have a gynae review in April 2012 to see whether I am able to continue taking the Zoladex and Tibolone.

Wednesday, March 2, 2011

Update

I am remaining on Zoladex with add-back HRT for the time-being, but one thing that it is possible might improve my endo-pain if I come off Zoladex is improving my core stability, and both deep and superficial abdominal muscles. The reasons that this might help, particularly as I am hypermobile, is that it might mean my organs are better supported and there is less wide-spread pain - e.g. back pain. This won't of course stop the endometriosis growing if my periods re-start, but it might just mean my pain is improved, fractionally. I will report back, but my physiotherapist says I am not ready yet and that my abdominals require further work. Look at my other blog for further imformation about Hypermobility, Hypermobility Syndrome and physiotherapy. http://danceinjuryrecovery.blogspot.com/

Thursday, November 11, 2010

Hospital Update -11-11-2010

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.

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.

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!

Sunday, December 6, 2009

Zoladex 'failing' or wearing off prematurely

The day before my 35th birthday was not a good omen. I was sitting at work in the afternoon and my pelvis and back started to feel....bad. It was a horribly familiar feeling. My pelvis felt like someone had poured hydrochloric acid into it and then ignited a fire. My back felt similar. I debated whether I should go to ballet and my boss said to go - not knowing I was in pain. I spent most of the class on my hands and into forward flexion as standing was too difficult. I cried on the way home and then took oramorph, codeine and volterol in that order. Sleep was not easy. The next day, my actual birthday, things were even worse. I could hardly stand and was having contractions and spasms in my lower abs. In the afternoon I went home to bed, but the pain was really bad and the spams were really strong. Eventually after talking to a close friend I phoned for an ambulance and was taken to King's. A&E were packed and I wasn't seen for a good two hours or more. I was examined, and put on morphine. Much to my surprise the gynae registrar admitted me and I found myself finally admitted to a ward just after 4am. I was then kept in until Saturday morning and administered lots of drugs including a new one for muscle spams called Baclofan.

It seems reasonable that the zoladex has worn off prematurely - I had recently changed from having a monthly hormone injection to three monthly, and it seems the three monthly one had not held sufficiently. Whilst I was at hospital they gave me another monthly injection early and we hope that will kick in and stop any further periods from starting. As it is I now do not know where I am in terms of a cycle and whether a period is imminent and likely. Since being back at home the pain has been awful, but then I got back on top of it again and slept like a baby. Now just feeling empty and hollow and rather low having missed all the birthday celebrations I was meant to be having. I really need to consider hysterectomy now.

Saturday, September 19, 2009

Appointment Update

My most recent appointment at the Endo clinic did not bring particularly good news. Firstly, my bones are now in osteopenia, which is the prelude stage to overt osteoporosis. I have been recommended to take 'Calcichew' although my GP wants to check my calcium and vitamin D levels before this is commenced. Interestingly, osteopenia is related to Joint Hypermobility Syndrome, although I suspect it is very much more related to lack of oestrogen in my case owing to the zoladex regime. It does go to show how delicately balanced our bodies are, and how manipulating the normal course of horomones can have a large impact.

I have a maximum of one more year left on the Zoladex, and now face the prospect of major surgery at the end of 2010.

Monday, April 13, 2009

Hospital Appt Update - April 2009

I had a hospital appointment on 9 April 2009. The outcome is that I am allowed to continue with Zoladex for another 6-9 months. The long-term outcome is more uncertain. I am glad that it does mean I can safely complete my MSc period and therefore pain-free, otherwise that could have been disasterous.

The endo-nurse at my hospital clinic will also be making an appointment for me to have a bone density scan on or before my next appointment in October 2009. If my bone density is 'normal' it is more likely I will be able to remain on the Zoladex.

So my future is secure for now. My long-term future remains more uncertain. The contraceptive pill does not work, the coil doesn't work for me, neither does Depo. Surgery works for a short-time only. I have to hope that the doctors see common sense and allow me to remain on Zoladex. At my next consultation, which I hope will be with a consultant again, rather than a junior doctor, so I can also mention my recent diagnosis of having Joint Hypermobility Syndrome, and whether this has an impact on the pain I experience with endometriosis.

Tuesday, September 9, 2008

Oh no....

I am actually wondering how effectively the Zoladex is working. I have been in quite a bit of pain over the past day or two and thought it was just being bloated and guts not being great, but as it turns out I am having another bleed. I am hoping that this will be the last blip and that once I have the third injection on 17th September, there will be no more problems. I need to be fully fit and well from here on in as I am about to start an MSc and will have a very full-on schedule.

It is now just over one year since my surgery....!

Friday, July 25, 2008

Back on Zoladex - 25-7-08


Despite some overall improvement in my periods and there were a few which were definitely much better, I have started to get in more severe pain again and finally resorted to restarting Zoladex injections today.

I am about to start a full-time university course and I cannot have this continual disruption; so it is back to hot-flushes again. What joy!

Wednesday, March 5, 2008

Good News

I have now had three periods which have been what I would consider to be "normal" and what most women would experience. Yes, I have needed painkillers, but compared to how I was existing before, this is completely manageable, and paracetamol and volterol seem to be sufficient, with a bit of codeine at night.

On two the last two periods I have even done a ballet class, which would have been completely unthinkable in the past.

I have managed to work normally, see friends and live a "normal" life. My life has not stopped because my period started.

I believe that my endometriosis was completely removed at the surgery in September, and I think that other improvements such as very, very low wheat/dairy diet have also improved things.

It is wonderful not to have my life disrupted and to experience a few days of a little inconvenience, but my body otherwise doing exactly what nature intended.

Friday, January 25, 2008

Dexa Bone Scan Result

I am delighted that my latest Bone Density Scan result was NORMAL. This means that there should be no problems in me returning to the hormone medication of Zoladex and HRT if my periods become too painful.

Based on the last period, I am going to wait and see.

Good Period

Despite the bad PMT - probably caused largely by a new bra :) my last period (8 January) was actually much better than the ones before. This meant that although I still needed painkillers, I could work normally and did not want to jump off a cliff or drown myself in morphine. This is a positive result!

Maybe the next one will be OK too....!

Friday, January 4, 2008

PMS

Things are already getting interesting this month, and since day 24 of my cycle, which happened to be the 1st January 2008 - so Happy New Year to me, I started to have the most awful breast pain - which is still going on. If anyone comes near them they will just get it - it is bad wearing a bra, and just as bad not wearing one. I can't win! It is strange because I don't normally get anywhere near as much tenderness as this.

Had a look at gynaecology book to see what the significance of day 24 of the cycle is, and it seems that both oestrogen and progesterone have totally dropped off at that point, so maybe that is why.

Books suggest no dairy or caffeine, both of which I had cut for over 5 weeks, and for much of the last few weeks as well - so there is no justice at all! Bring me a latte right now!

E-Petition

"Endometriosis is a severe, chronic, extremely painful, debilitating disease yet it is not being recognized by benefits services. There is no cure. Women are left debilitated with pain and are unable to carry out normal daily tasks in many many cases, let alone hold down a job. We are asking the government to make new guidelines for endometriosis sufferers, especially those being assessed for Disability Living Allowance."

petitions.pm.gov.uk/endometriosisdla/

Please sign this petition!

Thank you.

Tuesday, December 18, 2007

Bone Density Picture

Feeling better again

I am now in my 'happy cycle', thank goodness, and what a relief! Life feels more positive, and being pain-free means I can live my life to the full.

Got a call from the hospital today to say I am now having my Bone Density Scan on 23.1.08. That is obviously a lot sooner than May, but I may still attempt to phone them to see if there is any chance I could bring it any further forward.

More than anything else I am concerned now that the actual test result is OK, because having a bad result could be disasterous, not only for my bones, but will mean I am unable to return to Zoladex. I am not sure how I will handle that.

Thursday, December 13, 2007

Update

This week has been just awful. On Monday evening, I ended up going to A&E, but it was all a waste of time, and they didn't do anything. Putting me on an IV or Morphine was mentioned but not carried out. Had a long chat with the very nice doctor about how it wasn't just the physical pain, but the effect it had on my mental health as well.

I am now on day 6, and things have finished for the month, but am left with the most terrible depression which is really knocking me sideways, and taken the wind out of my sails having not had this for about 5 months. Just feel awful and seriously wonder what point there is in me going on.

My work have been lovely and sent me the most beautiful bouquet of flowers. Additionally I have just heard I am going to be allowed to have a cat flap, so this will give me much greater choice in the type of new cat I can choose.

Monday, December 10, 2007

Day 3

Usually on day three things start to level off, both pain and bleeding-wise. Not so. In fact although things were manageable in the day-time, things seem to have taken off to a new level again this evening. Means upping the anti on the drug front in order to cope with the battle. Gets quite interesting really - working out a strategic plan of action. Had another hot bath - seem to be having about 4 baths a day at the moment. Hot water is on 'constant'. Did some deep breathing for a while, 'pushing the pain away' as the midwives show you on TV programmes where women give birth. Was quite a good thing to do. Got various pillows to put under my knees in bed as my back is too sore to lie flat. Got a heat pad on full-blast.

Saw GP again today. She asked me what I wanted to do. Duh! I would have thought that was obvious... But then again, perhaps not! I have asked her to contact my consultant again and tell him how unmanageable my situation is, and how on top of all the pain I am now very depressed and also about to shout at anyone who gets in my way. I too, left a distress message on the Endo nurse's phone in the early hours of Sunday morning. My GP and I discussed hysterectomy - I said, I'd love one, but consultant isn't convinced this will solve my problem.

There is no doubt about it - I have reached the end of my tether. This can't go on.
I didn't go to work today. Tried to do some from home and gave up. My concentration was poor, and I was too depressed to do much. Given that my pain has increased significantly again this evening, I shouldn't be too surprised if I don't go in tomorrow either. I am so hypersensitive that I am liable to cry if anyone says anything slightly unkind to me, and I am apt to making mistakes whilst I am drugged out and all over the place. This is no quality of life at all.

Sorry for the whinge!

Saturday, December 8, 2007

"To You"

I look at you and know that you are hurting; I can see the pain in your eyes and the drops forming at the corner of your eyes oozing vulnerability. I gather you up in my arms like a bundle of wood, being careful not to splinter you. We are sitting in bed and I am behind you with my legs around yours in the spoon embrace. I am kissing you tenderly, but non-sexually on the nape of the neck, and stroking your hair. I am rocking you rhythmically, but oh, so gently. The bravery in your face is being washed away by your flowing tears. I want you to let it all out. I stroke your arms and my silence intensifies as I listen to your broken words. Gradually I am anchoring you, and although you are still a heaving wreck, you have let go and let me take you on board.

Gradually you subside, and your storm tempers. I gently cover us both with a quilt and you crash in my arms; exhausted by your fight. Your breathing relaxes like a subtle breeze, and I cease rocking you. I place you gently onto your side and wrap my being around yours, until we are a jigsaw, saving any missing pieces. I continue to stroke your soft, warm body, before I myself succumb to sleep.

In the Wee Small Hours

There is no doubt that being in pain is an isolating experience. The worst thing is the loneliness that one feels when being in pain in the wee small hours of the night. It is a difficult time because everything is very quiet, and normally you would be fast asleep yourself... except you can't sleep. The pain is keeping your brain up and active which leads to more frustration and misery because there is no one you can talk to, or cuddle up to if you are single.

I sometimes dream of someone just scooping me up into their arms and holding me and telling me that it will all be OK - even if it won't be. It is just about getting rid of some of the misery you feel and dumping it temporarily onto them. I suppose there is great truth in that old adage, 'a problem shared is a problem halved'.

Chocolate

Basal Temperature Thermometer

I am going to chart my temperature daily with one of these (above) - thought it might be an interesting exercise, not there is the remotest chance (nor would I want there to be!!) of the patter or tiny feet.....

Mr P .... was late!

Well OK - only 2 days late, but it gets to a point where you just want this thing to start so that it can go away again for another 28-30 days.

The thing is that I am still having pain for at least 8-10 days, and even if it is less severe (so far!) than before the surgery, it is still a chunk of time out of my life each month, and is very wearing.

I am also feeling very depressed today - very empty and don't want to be by myself, even though I am. Am also missing the cat horribly - she was a legend on days like this.

Wednesday, December 5, 2007

Nearly Due....

Started to have some pain over the past few days - generally all fine today, still expecting things to kick-off soon. It gets worrying for me at work - I hate messing people about, but it is a situation that is also beyond my control.

I am hoping that things will be better this time around with the Mirena now gone.

Friday, November 23, 2007

Ovulating

Was ovulating today -don't ask how I know - just do!!! I've always had a 'sign' and not a religious one, that is sure! Glad I am not around any men I fancy just now....!

Gyanecology - Out Patients Appt Today

I had my second gynae appointment today - last one only two weeks ago when they removed the Mirena coil which by then was in my Cervix!! I was in extreme pain - and probably put several posts about it then....

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

Much Better Again

It is so good to be back to my normal self again - and have been for the past 3 days at least. I smile, have energy, and can do everything again.

Saturday, November 10, 2007

Friday, November 9, 2007

Time of the Month

Evidence-Based Medicine

I am emailing to request the help of those who know me very well.

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,

First Reply:

TO WHOM IT MAY CONCERN

Re: MizzK

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.

Trustee, A2A

Depressed

I woke up this morning just after 10am (had woken up at 8am, but went back to sleep). I awoke feeling so blue and just that there was no point to today (or any other day). I hate it when I feel like this, but there was nothing I could do - I felt empty and chronically sad.

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

Mirena - Is OUT!!!

Had my emergency gynae appointment today and feeling just so angry, but above all physically and emotionally exhausted.

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

Update

One week later, I am still in pain.

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

In Pain

I am having my first period since my laparoscopy and post Zoladex, and I am not a happy bunny!

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.

Tuesday, October 30, 2007

Wednesday, October 10, 2007

The Skin Collection

I would like to take this opportunity to promote 'The Skin Collection' Poetry...

http://chipmunkapublishing.co.uk/shop/index.php?main_page=product_info&products_id=864

Monday, October 8, 2007

Clinical Trial for those taking GnRH Analogues - e.g Zoladex

Clinical Trial - Volunteers wanted!

Have you been prescribed a GnRH agonist for 6 months for endometriosis or any other reason?

If so, would you be interested in taking part in a research study at the University of Oxford?

We are trying to find out if using a device like a TENS machine (which delivers mild electrical stimulation to the back) can prevent the small amount of bone loss which typically occurs with this type of drug. These temporary changes in bone density mimic those that occur around the time of menopause. Electrical stimulation may be a safe way to reduce or eliminate loss of bone density.

If you are interested in participating, please contact Fenella Roseman 01865 221003 - Fenella.Roseman@obs-gyn.ox.ac.uk – for further details.

Wednesday, September 19, 2007

Endometriosis and Work


I produced this piece of research last year which looks at women who have endometriosis and their ability to work (or not).

http://www.bowenworks.org/downloads/endometriosisandwork.pdf

Mirena Moan

Well it may be small, but it seems to be continuing to cause me a fair bit of pain. Had a check up at my GP Surgery, and the nurse could still feel the threads of the Mirena OK. My GP also gave me more painkillers. NSAIDS seem to be the best ones which figures given that the pains are cramping pains - a bit like period pains.

I am probably still expecting too much too soon as it has only been two weeks since surgery. I had a chat with one of the Endo nurses at my hospital who was really nice. I have agree to keep going for now, but can talk to them again and they will bring me in sooner for my OP appointment if needed.

Sunday, September 16, 2007

Grumpy and having some pain

Mirena - Pain?
I had my 4th lap almost two weeks ago, and I thought I was doing really well until yesterday when the pain had stepped up a notch and this morning have woken to period-like pains. This has made me grumpy as I am returning to work today and don't feel quite the ticket.

Don't get me wrong - this isn't pain like I would have had with an actual period, but is pain enough in the back and ovaries to need painkillers.

Is this most likely to be down the Mirena that was put in at the same time as the lap under GA, or something else? If so, how long is this likely to go on for. I am not bleeding at the moment, and had my last Zoladex injection 4 days before my surgery.

Any advice appreciated!:(

(This question has been posed by me on the Endometriosis UK Online Board. I await responses with interest)

Menstrual Murder

I think that every women would agree with this, and it certainly backs up the need to reduce periods in women with Endometriosis - see talk notes in the next entry.

Wellbeing of Women Show


Photograph shows PCOS

Yesterday I went to the 'WOW Show' or 'Wellbeing of Women show at the Royal College of Obstetricians and Gynaecologists. There were some useful sources of information there including stands from the Pelvic support group. There were also a number of informative and interesting seminars to attend. The one I chose (naturally!) was a talk by Consultant Gynaecologist Miss Gillian Rose about 'Endometriosis and PCOS'

Straight away, Miss Rose made the extremely valid point about the logic of combining two such very different gynaecological conditions, in a 30 minute time slot, when days of seminars and debates could be given to each topic. Nevertheless, she managed the task admirably and gave a succinct and very interesting account of both conditions.

PCOS - www.verity-pcos.org.uk/

PCOS (Polycystic Ovarian Syndrome)
PCOS
· Commonest Endocrine disorder in women
· 1 in 5 have it or 15-22% of women

Symptoms
· Irregular/no periods
· Acne, increased facial hair
· Weight-gain
. Infertility
· None
· Insulin resistance www.bbc.co.uk/health/conditions/metabolicsyndrome1.shtml
·
Definition
To ‘have’ PCOS definitely, a woman must have 2/3 of the below criteria:
· Irregular/no periods
· Hyperandrogenism (acne, increased hair and/or scalp hair loss)
· Polycystic ovaries – these measure only 2-9mm and look like small beads in a necklace.
www.endocrine-abstracts.org/ea/0014/ea0014S11.3.htm
PCOS Causes
· Inherited genetically
· Dominant gene can come from either the father or mother
· Highest prevalence in Asians

Does it matter having PCOS?
· Increased risk of having diabetes
· High blood lipids
· Increased risk of heart disease
· Increased risk of breast cancer
· Increased risk of endometrial cancer

Other Treatment
· Control periods via use of the Pill or cyclical progesterone
· Hair control –e.g. lazering/waxing or by use of hormones e.g. Yasmin.

Fertility and PCOS
· Weight loss is important – the higher the person’s Body Mass Index or BMI – (the lower their chance of conceiving. It is worth noting that Fertility clinics will not treat women with IVF who have a BMI of more than 30 as the success rate is virtually nil)
· Fertility drugs
· Laparoscopic ovarian drilling

Weight-loss is key in the management of PCOS. The higher the woman’s weight increases, the more the symptoms do including increasing problems with insulin resistance and infertility. It is hard for women with PCOS to lose weight, but it can be achieved if they limit their intake of fat and carbs and take regular exercise.

Endometriosis
· Presence of the endometrium (lining of the womb) outside the womb.
· Flow back occurs via the fallopian tubes, one of the reasons for it forming.

Endo – who gets it?
· 10-15% of women. Interestingly, there is no actual increase in the % number of women who have endometriosis since the 1970s
· Peak age for endometriosis is 25-34 years old, but teenagers can have it and it is important for doctors not to ignore this.
· Endometriosis is oestrogen dependant

Where is it found?
· Pelvis
· Pouch of Douglas
· Ovaries
· Bowel
· Bladder
· Rarely – further afield – e.g. lungs

Symptoms
· Painful periods
· Painful sex
· Infertility
· Bowel symptoms
· Bladder symptoms
· Chronic pelvic pain
· Ovulation pain
· Backache
· Tiredness
· None!

Heavy periods are NOT a symptom of endometriosis, but a factor that leads to endometriosis

How to diagnose Endo
· Medical history of the patient
· Examination
· Ultrasound Scan
· Laparoscopy
· MRI Scan – useful if bowel endo is suspected. Needs a skilled Radiologist to interpret it or it can be missed.

Why is it so difficult to diagnose?
· Presents in many different ways
· Overlaps with many other conditions e.g. IBS

Who gets it?
· Age of first period is relevant – the more cycles you have, the greater the risk
· Shorter cycles increase the risk
· Family history – it is a genetic condition. If a family member has it, you are 7 x more prone to the condition
· We have many more periods than our Foremothers and mothers – about 450 to their 150 or so periods as they started their periods later, became pregnant earlier, had more children and breast fed a lot which all meant that they had much fewer periods than we do now.

Medical Treatments for Endo
· Continuous taking of the Pill with no breakthrough bleeding
· Progesterones – e.g Provera
· GnRH analogues – e.g. Zoladex + Addback HRT
· Mirena Coil which is loaded with progesterone. Periods get lighter and eventually stop.
It is important to manage endometriosis for it is a chronic disease.

How to treat it
· Stop periods! Reduce the number a woman has unless they are trying to conceive
· Surgical treatments – cut it out/remove it
· Pain Management – e.g. diet/drugs/complementary therapies
· Prevent disease recurrence – (stop periods)
· Support groups –e.g. Endometriosis UK
· Lifestyle changes –

Lifestyle Changes
· Diet can help –e.g. reducing wheat intake (reduces bloating),
· Not being constipated - codeine is a very constipating drug
· Drinking plenty of water – 2 litres a day which helps the bowels
· Exercise – very important in the management of chronic pain as it is very good for the immune system which releases endorphins and can help with tiredness. Push your energy levels!

There is no good reason for women to continue having periods unless she is trying to conceive. Stopping periods for women with Endometriosis is the best way to manage and prevent recurrence.

Friday, September 14, 2007

Back to Normal


Yesterday I hardly took any painkillers which has meant that my bowels could finally clear properly as codeine is a constipating painkiller. I think that this has had two impacts:

1) Because my bowels are clearer, my stomach has gone down quite a lot so there is less pressure on the site of operation.

2) Any remaining tenderness/pain has now almost gone.

Although there has been some concern shown by Bowen Therapist colleagues and friends about me doing ballet again, I genuinely feel well enough to do this, and know my own body well enough not to push myself too hard. To be honest, I feel so energetic at the moment, that it feels entirely natural to exercise!

Wednesday, September 12, 2007

Weary - Update

I am weary today, but not sleeping at night! My head is so busy and I have so much I want to do, but my physical body ain't yet playin'

Yesterday did some ballet again, but hard to do when I can't suck my gigantic stomach in. Also went for a walk as it was such a wonderful day.

My healing continues to be good - still on some drugs, but cutting them right down now.

Monday, September 10, 2007

Stitches Out

I had my stitches removed today, so healing a little more every day. Just wish I didn't feel so large and swollen and look .... pregnant.

I did quite a lot of work from home today, but am actually feeling really weary this evening, so I will keep this entry (from your point of view) mercifully short.

Sunday, September 9, 2007

Bowen Therapy


Both yesterday and today I had some Bowen Therapy from a very good friend of mine and I am really starting to feel so much better. My back feels a lot less angry and much more comfortable and my pelvis feels generally better and less tilted. The surgery are is still sore, but again less painful overall and I have really cut down my painkillers today.

For those of you who don't know, the Bowen Technique is a gentle soft-tissue therapy that was founded in Australia by the late Tom Bowen. It is a revolutionary treatment that involves a series of rolling moves across muscle fibres which tap into the body's own innate healing ability through the muscle stretch receptors and muscle feedback mechanism. It is suitable for all and I cannot recommend it highly enough. Indeed I owe the last ten years of my life to this remarkable therapy.

See my website for further information www.bowenworks.org

Saturday, September 8, 2007

Days until next OP Appointment


The Great Greyness ..... and Pain

Last night was not good. Despite bragging how well I was doing, and feeling positive and not in too much pain, went to bed and was shortly rolling around in agony. Back feels red raw sore and my guts are wriggling in anger over a very inflamed pelvis. Hot water bottles and heat pads didn't help, so finally I succumbed to ringing the ward I stayed on to find out what I should do. I had no painkilling options left since I had taken all the tablets for the day, and more besides. The nurse who answered the phone was kind, but could only suggest A&E and felt I should go. I grimaced at the thought of my local A&E in the early hours of Saturday morning.

I arrived at a fairly and predictably packed A&E at around 3am. I staggered in with dramatic effect and after a short wait was triaged alongside the lushes after their night's out, the sore throats and bad knees that had been bad for 2 years anyway.

One girl had grazed her face and had had a nose bleed - the effects of the young British woman after a Friday night out. One man had been in A&E since 1am with a sore throat. A 40 something man had taken his bad knee (of two years duration) to A&E and then there was the odd dodgy ankle and several poorly babies.

I was mightily annoyed that the 'Minor' casualties got seen ahead of me, as I was triaged as a 'Major'. By just after 6.30am I was enjoying a swig of Oramorph, but not before I had endured a rectal examination, and yet more blood tests on my black and blue arms.

After a review of my pain-controlling medication, I left at just after 8am, into the still, cool, grey morning that had appeared, still in a morphine-induced haze, and blood tests declared normal.

To be fair the doctor was extremely nice, and I have been told to come back again, but it is obvious that I was not given adequate TTO drugs when I was discharged on Thursday.

Sadly my pelvis is so inflamed after so many years of pain in the area, and the nerves so highly sensitized that it is hard to tell anymore what exactly is 'normal' pain.

Frankly, crying in the early hours of the morning were too much of a stark reminder of this wretched condition. A memory that is still far too fresh, even though I haven't had this pain for over a year. Scary that.

Friday, September 7, 2007

Newspaper Clipping!

Chocolate

Chocolate should be a licensed drug that doctors can dole out on prescription. It is nutritious and simply delicious and, well, simply very good for you.

Important medicine and very good for Post-Operative recovery.

Hmmmm. Thoroughly recommended!

My Day

I finally got up at just before 10.30am having had a very good night's sleep mainly down to the OTC drug, 'Syndol' which is better than any of the other drugs I have been taking (except Morphine). The only problem was that when I woke up this morning, the effects of all pain medication had long since worn off given it was at least 13 hours earlier that I last took some. This meant it took a few hours to get myself comfortable again.

So what have I done today? Watched TV, been on the 'puter lots, had a bath, slept a tiny bit and have now just gone for a walk to meet a friend. Lovely sunny day, and now my pain is under control again, feel OK. Bowel movements also trigger pain, but I'm certainly not constipated, so the codeine obviously isn't bunging me up much!

Had lots of fun trying to get through to a hospital to 'choose and book' my appointment. What a huge waste of NHS time and money. Why not give me an appointment that I can later cancel (obviously not ill enough to need it then) or re-arrange it as one did in the good old days.

Reading 'In Stitches' - A critique of the Modern NHS, and an excellent read by Dr Nick Edwards. Highly Recommended!

Thursday, September 6, 2007

What a 'Normal' Pelvis should look like:

What the Mirena Coil looks like 'In Situ' via a scan:

2 Days Post-Op

I (finally) had my laparoscopy on Tuesday evening of 4th September. Despite having arrived at 7am, I didn't actually have the operation until just after 6pm on that day. I was amazingly calm in the afternoon, but started to lose it after 4.30pm when nobody was telling me what was going on, and whether or not my surgery would indeed take place that day.

I cried (and was physically shaking) on the way down to the anaesthetic room where they gave me an injection in my cannula insitu (used to give me IV fluids earlier in the day) and then I was asked to inhale something in a mask. After that I knew nothing more until I woke up in the recovery room at about 9.30pm.

The night following the surgery was relatively OK because I was given plenty of morphine that kept me nice and quiet. The following morning, the doctors came around to tell me what they had done. My cystoscopy and hysteroscopy were both normal and they removed all the remaining scar tissue and endo that was found in my pelvis, particularly to the left. Fortunately my pelvis was not as 'frozen' or stuck together as they had feared. The operation had ended with the planned insertion of a Mirena Coil.

The doctors tried to discharge me on the Wednesday, and I was very upset and tearful because I had partial concerns about whether they had removed all the disease given that I hadn't been having periods for a year. I was also anxious about any perceived return in pain etc and I did not particularly like one of the doctor's attitudes anyway, finding them to be rather slimy. In the end they said that I could stay over Wednesday night as there were some problems with my bladder and they wanted to make sure I was not retaining any urine, which I wasn't.

I had three visitors during the day who kindly brought along goodies in the form of food, chocolate and magazines. It was nice to chat to them, although I got sleepy quite quickly.

During early afternoon after having taken some Dihydrocodeine, 60mg, I started to have palpitations, so they had to take an ECG and then stopped that drug, although it seemed fine at 30mg. In the evening when I wanted something much stronger than paracetamol or volterol to take the edge off the pain I had to request Oramorph which has become my new favourite drug. Not only does it taste nice, but it works wonderfully well. Needless to say, I did get some of this drug, but it took a few hours. The result was that I then got some good sleep.

I seem to be now feeling more swollen and sore today, but I guess it will take a few days for all that internal bruising to come out. I also feel quite depressed, but I know that the General Anaesthetic can cause 'Post-Op Blues'.

Mum came to see me today with Mary and bought me food goodies, some of which I ate.

By mid-afternoon I was allowed home, and as I write this it is now 5.40pm. I have just taken some of my own favourite painkillers and will just take things easy.

I am hoping to return to work by Monday 17th September.

Now that the surgery over, I feel that a new chapter has begun. I am hoping that the Mirena will help and that my periods will be very minimal and that any pain will also be very minimal. All I can do now is give it a go. My first Post-Op appointment will be in December.

Monday, September 3, 2007

The Big Day!!!

As I sit and write this, it is 5.50am, and I have already been up for almost one hour, unbelievably. The taxi arrives to take me to hospital at 6.15am, at vast expense, but I really didn't want to be attempting public transport on a day of a tube strike (how did I manage that one!)

I slept really well last night, waking only once, and I am very sleepy this morning and amazingly relaxed. I am sure the nerves will kick in very soon.

I am still overwhelmed by the number of friends and family who are really gunning for me today and hope that I recover both well and quickly. I am so glad to know such wonderful people, and I do feel very supported both practically (with shopping offers etc) and emotionally. Thank you all again.

I am now officially 'Nil by Mouth' since 5am, so I know that I will start to feel much weaker fairly soon, but at least I can collapse in hospital and it won't matter anymore.

I am philosophically open to what might happen today. I am psyched up for it being fairly major, but have every confidence in my doctors, and if I do have to have a laparaotomy or anything else, I know it was because they are trying to do the very best for me.

Anyway, so long for now, and hopefully I will be able to update this in a few days time.

The Day Before...!

Well it is now the day before my surgery, and day two of the bowel prep diet.

First things first...! Thank goodness for the advice about getting moist toilet tissue and vaseline for my ar*se which is now very sore. I am still feeling OK though in myself, weary, but OK.

I am resigned to whatever my fate is now with the surgery. I have done all that I can to prepare myself both physically and mentally. I have got friends to feed my cat, and several people coming into see me in the coming days. I have also had friends offering to do shopping for me, so I am feeling well-supported.

I am scared about the aftermath of this operation, what they will find and what will go on. I really don't want to have to go through it again, so hope that they can 'do it in one'. I have a feeling that it will take them several hours, that much will be done, but that my bowel will generally remain intact! I am trying to be positive and not 'fear the worst'. I am prepared for the fact I will lose an ovary and my ureters are in danger. I am not sure about my bladder, but think they will have to do quite a lot to it. I am estimating leaving hospital within 5 days of it, but quite frankly, everything is an unknown factor until tomorrow.

Friday, August 31, 2007

Women's brain risk for losing an ovary

http://news.bbc.co.uk/1/hi/health/6970731.stm

This is not what I want to hear about 4 days before my surgery....

I am raving mad anyway, so perhaps in my case not going to make much difference.

Thursday, August 30, 2007

Where the Surgeons expect to find my Endo

They are expecting to find that all the area where there are blue spots will be totally stuck together.

Endo - The trail of devastation. My Pre-Op Assessment

My cat doesn't like Rabbit-flavoured Go-Cat. Much as she is obviously grumpy about this, it doesn't match my day, and she'll need to wait for the Sainbury's delivery that will arrive later on.

Today I went for my 'Pre-Operative Assessment'. It was a good job that I arrived early because I didn't leave hospital until 12.30pm, and I had my own busy clinic starting at 1pm.

The first thing was the weigh-in, which wasn't going to be pretty anyway. I am sure after the 2-day Bowel prep diet, I will have lost another 4kg at least! I had my BP taken which was 130/74 and then I was asked all the medical questions by the nurse - e.g. previous surgery, heart/lung problems, what medications am I taking? etc etc. After this, I had to go and have some blood tests done so that they could do a cross-match for surgery, and check my blood group and iron levels. I then went to see (one of) my Consultants.

The first thing that my consultant asked was what I wanted/how I felt about things. I explained how when I had the endo, I had constant pain and no quality of life, how all this had been going on for years and how now what was important to me was quality of life. The consultant said that sadly the endometriosis has been left for ten years, untreated, and that through no fault of their own, the other 'experts' had just gone in via laparoscopy and then left things. All the Zoladex has done all this time has cover up all the symptoms. Hearing all this made me feel quite devastated just because it is ten years of my life that has been thrown away through other surgeon's ignorance. I am also feeling angry about it.

This consultant said that my surgery is going to be aggressive - to say the least, I'd say. They are apparently expecting me to be 'covered in it' and for all the area around the bowel, ovaries, bladder and ureters to be stuck together. They are going to do a cystoscopy (having a look inside the bladder), A hysteroscopy (looking inside the uterus), then they will do a laparoscopy and remove every cell of endometriosis they can. There is a possibility that I will lose an ovary and that they might need to cut some of my bowel away and re-stitch it, but if they damage it I will end up with a temporary colostomy bag. If they can't get rid of all the endo on the ureters then they might have to put a stint into them (if they cut them). They will do a laparotomy if they cannot access all the endo. They will end up by inserting the Mirena IUD if they think it will the right for me. Finally, there is a possibility they might not get this all done in the one surgery, or it might be too much for my body to cope with, so they might have to do a 'round two' in three months time. I really hope this doesn't happen.

To be honest I had no idea that my surgery could be so involved. But they have ten years of stuff to laser away, old scars from previous surgery to negotiate and adhesions. The consultant said it could take up to 5 hours.

I will be in hospital 2-5 days - probably leaving between Friday and Sunday, again all this depends upon what I end up having done and how well I recover after all of it.

I am also taking part in a study to do with the optimal removal of catheters post endometriosis surgery.

I am still not able to arrive at hospital on Monday night, but they have now agreed I can go straight up to the Gynaecology Ward first thing on Tuesday morning, so I know where I am going to be afterwards, and so I can unpack etc. This is a bit of good news.

Finally, the dreaded Bowel Prep diet means I will be on a liquid only diet for 2 days prior to Tuesday, so that really doesn't sound fun, and am not looking forward to doing it much either.

My head is swimming with all this new information. I know the doctors have to spell it out, but I had no idea it was going to be as drastic as this - but that is because none of the other doctors have done much to me in the past. I can see now that if it wasn't for me trying lots of complementary therapies in the past, especially Bowen that I would be in an even worse mess than now. The Bowen Technique has kept me going all this time, helping with the worst of the pain when I had periods, as well as Morphine.

Tuesday, August 28, 2007

Friends


I would just like to write today that I really value and appreciate my friends. A number of them have said they will visit me, whilst one person has even nominated her husband to drive me to hospital if I go in on the Monday, and she and another friend will personally ensure I get there OK!

I have a lovely friend who will pop in and out on my first discharge weekend, if I am out by then. I also have other friends who are doing things like looking after my cat.

I may be single at the moment :( but in the absence of an actual partner, I am enormously glad I have a very good group of friends. You know who you are, and thank you in advance for coping with a potentially very grumpy woman!

Sunday, August 26, 2007

Miserable!

I had an awful night's sleep last night; head would not slow down and had terrible restless leg syndrome so must have kicked more than the whole of the England football team. My poor cat!

I have had a severe headache all day and really bad neck and head tension. Finally took some tablets at 5pm.

On the brighter side, it has been mainly sunny again today, and had a nice walk around Peckham Rye at lunchtime.

Spent some time today getting things ready for hospital. Yes, I still have 9 days to go, but am away all of the last few days before the operation, and hugely busy.

Feeling a bit subdued today and I guess tired.

I am hoping one of my good friends and fellow Bowen Therapist is going to come around later to give me a treatment. Definitely think that will help!

Saturday, August 25, 2007

Buying Sanitary Protection... Again!


After a year Tampax free "It's my life...."and being a blissful menopausal state in both the men and mensus sense, I am resigned to the fact that I am going to bloody well have to fork out for STs again. OK the Government may have waivered the VAT, but it still kinda grates.

My Last Supper


Whilst tucking into some very nice Cornish Ice-cream, I was reflecting upon what I'd like to have for my last supper, which I may hasten to add, will be 2 days before the op. Since it has to be food that is both dairy-free and low fibre (oh goody no fruit or veg!) then it will be a bloody rare burger from GBK with chips - well they don't count as potato surely? I would wash this down with some chocolate, or something.

Anybody else got any good ideas?

Seriously though, If it were possible to choose your very last supper, what would you really eat?

Tuesday, August 21, 2007

Wellbeing of Women Show and Endo Article

I would like to be well enough to attend this show - The Wellbeing of Women Show' on Saturday 15 September 2007, at the Royal College of Obstetricians and Gynaecologists:

http://www.womens-health-concern.org/Events.php

Here is another 'Endometriosis' article I have found:

http://www.wellbeingofwomen.org.uk/docs/pdf/Endometriosis.pdf

Mirena Coil


http://www.patient.co.uk/showdoc/23069136/

Two weeks to go...

I can't believe that it is now two weeks to go until my laparoscopy, or 'lap' as they are more affectionately known by women with endo. Time seems to be slipping away fast, and with it my perfect pain-free life.

There is no doubt that I feel resentful about this operation, that I don't want it or the new mirena coil treatment at all. I would just love to retain this present and blissful 'status quo' regardless of the long-term side effects of my present Zoladex regime. I am wondering how I can communicate this to my consultant.....

Sunday, August 12, 2007

Questions/Information for my Anaesthetist


Questions/Information for my Anaesthetist:

· I am particularly anxious about this surgery, and wondered whether I could have a Pre-Med on this occasion?
· I get very sick when I am on Morphine, so please could you ensure you give me plenty of anti-sickness medication?
· I get very frightened about having the actual injection that puts me to sleep – any advice?

Medications that I am taking Regularly:
Zoladex 3.6mg – last injection (either 30/8/07 or 3/9/07)
Tibolone – 2.5mg – This was stopped on 6.8.07, one month before surgery
Beconase nasal spray - two sprays daily (for hayfever etc)
Duloxetine – 30mg – I am coming off this drug, so am now only taking this occasionally
Lamitrogine – 50mg – taken once a day

Painkillers I like taking (or help):
Syndol (allegedly for migraines, brought OTC). Has codeine, paracetamol and other stuff in it – a muscle relaxant.
Co-Proxamol (now no longer available, sadly)
Co-Codamol – not as good as the above.
Voltoral – suppository only (I get nauseous with the tablets – taken too much of this in the past, so stomach is less tolerant)

Drugs that I have had adverse reactions to in the past:
(Main problems caused – sickness/palpitations)
Dotheipin – gave me very severe palpitations
Tramadol – gave me very severe palpitations (happened once)
Morphine/strong opioids make me very sick, so although I they help, must be given with plenty of anti-emetic injections, or things get very messy!!!

I have a disc prolapse at L4/5, and a very hypermobile spine that will get very irritated with lying very flat. I have been given lumbar epidurals in the past which have been extremely effective for management of chronic pain in this area.

Post-Operative:
· I don’t mind what medication I have so long as I am not vomiting!
· Unfortunately the whole pelvic area/lower back area is now highly sensitised because I have had so much pain in that area over the years, so please feel free to bomb me out as much as you want. I will then be much less grumpy to the ward staff!




Isobel Knight
August 2007

Questions/Information for my Surgeon

· If this all goes wrong, or the Mirena doesn’t suit or help me, is there any going back to the Zoladex regime? I am obviously happy to give this a go, but want a get out clause if it doesn’t work.
· I am very scared about this – not so much the surgery, but it is just that I have been so physically well over the past year, I am very frightened that this is all going to be taken away from me. Discuss!
· As well as sorting out my bladder and bowel and any other endometriosis found in my pelvis, will you be able to remove my fibroids and sort out the cysts on my ovaries?
· Can you remove any adhesions if there are any?
· If part of my reproductive anatomy was too damaged, would you remove it in this particularly operation?
· Are you going to be able to see the endometriosis given that I have been on a GnRH analogue based treatment for over 12 months?
· Given that I have ongoing problems with my back, which have been far more minimal over the past year, is it possible I have endometriosis in that area, or is just that the nerve supply is irritated there? I have a known disc prolapse at L4/5 and degeneration there.

Problems that I had, whilst menstruating:
· Bleeding from bowels, deep pain in the area when going to the toilet
· Unable to pass urine – often taking ten minutes, even on a full bladder, pain and irritation from this.
· SAExtreme pain, often needing very strong medication and hospitalisation
· Fatigue and sleeping problems
· Pain (in varying degrees) for most of the month)
· Severe depression, in addition to mood swings
· Back pain significantly worse (presently very well managed)
· Last scan in July 2006 showed small uterine fibroids and cysts on ovaries. My cervix and uterus are also retroverted which has often meant that my smear tests have had to be repeated. Smear taken in July 2007 was normal.

I am obviously hoping that following a return to having periods, in whatever form they present with the Mirena Coil in situ, that the above symptoms are very minimal!

I am so scared about it all because things have been so out of control for me most of the time, and I have only been well whilst on Zoladex, which is why I don’t really want to come off it. I think that if all this comes back I will not be able to handle it and will not want to live through more of this hell.

Isobel Knight
August 2007

Friday, August 10, 2007

Endometriosis - The Visual Story

Debilitating Pain to Depression: One woman’s continuous struggle with Endometriosis

One woman’s continuous struggle with Endometriosis


When it first happened, I thought that the blood would be bright red. Nobody told me that it might look an old, rusty brown colour. I was just twelve and a half. It was my first menstrual period.

I remember being given ‘sanitary towels’ that they seemed like wearing nappies. I was relieved to learn about the alternative. Tampax. “It’s my life…” Freedom.

At first the pain wasn’t too bad. In fact, my overriding memory at the start is of having to wear my PE kit one Friday afternoon because my flimsy school summer dress was soiled in blood.

Whilst I had no interest in sports at school, I used to do a lot of classical ballet and could easily do many of the ‘recommended’ stretches for relieving menstrual cramps.

By the time it came for me to do my GCSE exams, I had already spent several monthly mornings in Sick Bay. I had already tried the first line in basic ‘home’ pain management─Paracetamol and hot baths.

When it came to my A-levels, my then GP was more than happy to prescribe the Pill. I remember my mother saying that she could not believe that there was nothing better for period pain (having suffered herself). This was in 1993.

I then tried various forms of the Contraceptive Pill whilst at university. I would find them successful if they did not make me want to eat cake all week, or if I could physically stand up without crumpling in pain when my period was due.

My first visit to a gynaecologist was in 1994. I was just nineteen. He was quite an old man. I remember him saying that I just had ‘Primary Dysmenorrhoea’ (Pre-childbirth period pain) and that it would all improve when I had a baby. It was a horrible and degrading experience.

Not long after I graduated in 1997 I remember having some ‘period pain’ so bad that I passed out. The pain was so intense that I was completely incapacitated. It didn’t take my first employer long to realise that I was taking half and full days off on a rather cyclical basis. It was humiliating to say the least to have to explain to the Chief Executive (a man in his late 50s) why I was absent on a monthly basis. I was urged to ‘do something about it.’

My latest GP by this time also thought that having a baby would solve all my problems. I was only twenty three by this time, and had only just started my career.

I saw another gynaecologist who gave me a scan, which showed nothing, and also did a laparoscopy where she casually mentioned that she found ‘tiny amounts’ of endometriosis, but that there was nothing that could be done, and that it might be worth me following a low-wheat diet, and keep taking the painkillers.

I tried the ‘healthy and nutritious’ diet approach. I also tried a range of complementary and alternative therapies.

Another gynaecologist suggested a hysterectomy (and laughed), and then said, “Why not try a progesterone only pill?” I hated it─put on weight and was still in pain.

In 2000, another gynaecologist said after doing a laparoscopy that she couldn’t find anything other than old and dead endometriosis. I was told that my problem was psychological, and was sent to a Pain Management Consultant.

In 2002 I saw a gynaecologist who diagnosed that I had Moderate-Severe Endometriosis. It was also found to be in my bladder and later in my bowel. In 2003 I was diagnosed with ‘Moderate Clinical Depression’, and who can blame me?

Endometriosis is as yet a little-known and poorly understood condition where the menstrual flow escapes the uterus and is often found in other areas of the pelvis, and rarely elsewhere in the body. It can affect a woman’s fertility and cause a great deal of pain.

It is now 2006. I have just had two hospital admissions within a week of each other, to manage my pain. The second stay involved the use of morphine, a drug I thought used exclusively by Cancer patients. This condition has caused serious damage to both my career and long-term relationships.

I had six months off work in 2001, and have not managed to work full-time since then.

My last long-term relationship ended at the beginning of this year.

The pain is debilitating. My back feels as if it has been stabbed and my ovaries feel as if they have corkscrews going through them. I can hardly stand on the bad days. I have suffered from depression since 2003, and believe that this is very much related to the endometriosis.

Last year I was on of the lucky ones. I had tests for fertility, including a blood test, a scan, and a dye injected to see if my fallopian tubes were blocked. I passed all my tests, but as yet I am unsure if I want to have a baby.

What future can I offer a child when there are frequent days where I am unable to look after myself, quite aside from being single?

Recent treatment programmes have involved barbaric hormone injections which completely stop my periods, and then I take HRT to ‘put back’ some of the hormones I lose during this false menopause.

Just lately, (having found out I also have small fibroids and Polycystic Ovarian Syndrome) I asked my present gynaecologist if I could have a hysterectomy. I was told that I ‘could not’ because I am only 31 and because I am at an increased risk of heart disease etc., from being on HRT. Having a hysterectomy at this stage might shorten my life, as well as completely end the possibilities of having a child.

I find myself confused. When I end up in as much pain as I have been, I find that I would now wish for a shortened quantity of life, for quality of life.

As the adverts of Tampax used to say, “Tampax Freedom, it’s your life.” It is my life, and I believe that I have a lot left to do in it. Period.

Approximately two million women suffer from Endometriosis. To find out more visit Endometriosis UK at www.endo.org.uk.

Isobel Knight
February 2007

Postscript
I am presently happily on the GnRH analogue treatment method (Zoladex) which works really well on me.

Days until Laparoscopy

Just for fun, I have decided to post a 'Tickerfactory' to count down the days until Tuesday 4 September 2007....


Bowel Prep Before Surgery

I am so looking forward to this.... Not. Just found a good site about it though:

http://info.datix.co.uk/net/mtw172/maidstoneguidelines.nsf/published/8cdabe65e1a433bf802570fc0046179c!OpenDocument&AutoFramed

Anaesthetic Anxiety


I have now had two dreams in recent weeks about being under General Anaesthetic. In the first dream, the muscle paralysis part of the GA had worked, but I was not sedated enough, and I could feel everything that they were doing, but not move. To me this is a very powerful representation of the feeling of powerlessness I feel both about the endometriosis and the forthcoming surgery.

In the second dream, I remember being on the ward, and being asked to be 'nil by mouth'. In my hunger, I decided to have a few Borbon biscuits. When I told the anaesthetist, he said this was the worst type of food I could have eaten! When the trolley came up to the ward, the nursing staff were debating whether to send me or another patient. I begged them to send the other woman, but they chose me...... Later in the dream, I came out of the GA towards the end of the procedure. I finally managed to make my voice heard and could see, hear and feel everything. The surgeon realised I was awake and the anaesthetist gave me some more anaesthetic, but it didn't seem to be working. He gave me some more, said to the consultant, 'that should do it' and left me. The surgeon was about to continue to do more, but realised I was still conscious. He then sent for the anaesthetist, who seemed to have done a total disappearing act. In the end, the surgeon and his colleague decided to half patch up my open abdomen and send me back to the ward, with the intention of completing the job properly in the morning. I remember smelling this putrid smell, which must have been my rotten guts. When the consultant came to see me in the morning, he said that I was 'covered in endmetriosis'.

Again, I think this dream sums up all my fears about the powerlessness I have in doing anything, and the lack of control I have when I will be 'under the knife'. I am sure these dreams must be common, but they are still frightening!

Thursday, August 9, 2007

Less than one month to go

It is now less than four months until my laparoscopy, so one last month enjoying the pure bliss of feeling physically well, and not in any pain.

I was asked to stop the Tibolone (HRT) four weeks before my surgery, which I have now done. I must say that my penultimate Zoladex injection was actually very painful - the GP who did it this time must have hit a whole load of skin nerves. I will watch out for a bruise this time!

I am hoping that I will not suffer loads of hot flushes in this HRT-free time, particularly as the weather has at last cheered up and is finally quite warm.

The Endo online chat boards have been full of quite bad post-lap pain and a few things about the insertion of the Mirena coil. I am still not overjoyed about this potential treatment, still I have no choice but to try it.

Monday, July 30, 2007

The Laparoscopy Survival Guide


Some of the women from the Endometriosis UK chatroom came up with some excellent ideas for surviving a laparoscopy. I am going to include some of my own in addition.

  1. Things to bring to hospital include: books, MP3 player/Ipod, magazines, big pants (post-surgery), your own sanitary towels rather than the hospital ones, earplugs (hospitals are noisy!), lip balm (lips are sore after having the anaesthetic tube), throat lozenges are good again for the same reason.
  2. Wear large baggy pajamas or bring nice relaxed fit jogging trousers to wear and a large t-shirt or jumper to cover your swollen tummy. Not wearing socks is also considered to be a good idea, since it is quite sore to bend down. Wear slippers instead!
  3. Demand plenty of anti-nausea medication. The last thing you want to do is to end up being sick.
  4. Demand plenty of painkillers, regularly!
  5. Rest a lot and remember that it will take a while for you to get back to normal.
  6. Be aware of post-anaesthetic blues which can kick in a few days after the operation

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.

Introduction- What is Endometriosis and Laparoscopy?

In just over one month's time, I am going to be having an operation called a Laparoscopy to treat a long-standing condition I have called 'Endometriosis'. Below are some notes that I wrote about a year ago from a small research paper I wrote on 'Endometriosis and Work'. If anybody wants to see this full document, they can contact me, or look on my other website, www.bowenworks.org

What is endometriosis?

Endometriosis is a condition in which the endometrium (the lining of the uterus) escapes into the surrounding pelvis and elsewhere.”[i] It is a condition that is so far poorly understood. The shed endometrium cause pain and inflammation as the cells attach themselves to other parts of the pelvis and grow in response to the women’s menstrual cycle. One of the likeliest reasons for endometriosis occurring was discovered by Dr Sampson in the 1920s, who developed the theory of ‘retrograde menstruation’.[ii] More recent arguments to explain the causes of endometriosis include immune factors, blood and lymph transportation theories, genetic and pollutant factors.[iii]

Diagnosis

The ‘Gold Standard’ (evidence level III) diagnosis for endometriosis is with a laparoscopy[i] The amount of endometriosis (if any) and its location can be found during a laparoscopy. If appropriate a surgeon may also remove any cysts or lesions that are found by laser or diathermy.

Images of Endometriosis

from www.emedicine.com

Management of Endometriosis

Endometriosis is often a complicated condition to manage so I am separating pain management from medical management.

Medical Management

Some women might find that they experience less pain after a laparoscopy particularly when they have had some treatment.[i] Some women might even find they can finally conceive. Both these are positive outcomes of surgery. For other women the symptoms of endometriosis can reappear again even quite a short time after surgery. This is because whilst normal menstruation continues, any remaining endometriosis, or new endometriosis continue to be fed by the woman’s hormones during the natural menstrual cycle.

There are a few well-known methods and established drug therapies that can be used to medically manage endometriosis. One is through using the oral contraceptive pill sometimes tricycling packets (combining three months medication at a time) so that a woman has fewer episodes of menstruation[i]. Another method is through use of Danazol a synthetic form of testosterone[ii]. This method results in some unpleasant side effects.[iii] Some women are treated using Depo-Provera, a form of progesterone, but again this also causes side effects and is less commonly used these days[iv]. Lastly, a group of drugs known as GnRH analogues are often used in the treatment of endometriosis. These work by reducing the FS (follicle stimulating) and LH (luteinizing) hormones and lead to lower levels of oestrogen[v]. Since it is the oestrogen that ‘feeds’ the endometriosis, this means that its growth is inhibited. HRT is given in the form of ‘add-back’ therapy to minimise the pseudo menopausal symptoms incurred by this drug regime and to ensure that bone density is retained, as far as possible.

One of the problems with any of these drug regimes is that they cannot be used for indefinite periods. In particular the use of GnRH analogues is not usually recommended for longer than 6-12 months because of concerns about osteoporosis and lack of bone density. The long-term usage (continuous usage over many years) of GnRH analogues is something that is yet to be researched, as far as I am aware.

This all means that medical treatments for endometriosis are fairly short-term, so that even if a woman is experiencing good pain relief and improvement in her symptoms that just as she starts to possibly feel well again the drugs are often stopped. This can be very frustrating, especially if the treatment has been successful.

Pain Management for endometriosis

Pain management for endometriosis is difficult because of the wide range of symptoms that it encompasses. A range of analgesia may be used including paracetamol, aspirin, NSAIDs and codeine-related products.[i] Some women who are in severe pain are occasionally hospitalised and offered morphine related drugs.

The use of TENS machine has been helpful to some women with chronic pelvic pain and endometriosis[ii] Electrical stimulation on the skin via a TENS machine distracts the pain signals and can give relief.

A nutritious diet is also important. One high in fish oils and vitamins B and E, zinc and magnesium can help with the inflammation of endometriosis.[iii] Some women also find complementary medicine can be helpful in their management of endometriosis. The most commonly used therapies are herbal medicine, homeopathy and acupuncture.[iv]

When pain becomes chronic, as it is estimated by Latthe to be a prevalence of 38 per 1000 women aged 15-73, some women might need to be referred to a Pain Management team for further support[v].

Some women with endometriosis find support groups helpful such as those run by the National Endometriosis Society, whilst others will find talking to helplines or website forums useful. These support factors are vital in managing what can often be a very lonely and isolating condition as many women find it hard to talk about gynaecological conditions.

The impact of endometriosis on a woman’s life

Endometriosis can have a profound effect on a woman’s life. In its’ worst form it can cause infertility[i]. It can also have a very negative impact on relationships since many women suffer from painful intercourse, and for some the stress and pain can be too much for a relationship to survive. The incident of relationship break-ups amongst women with endometriosis has not yet been documented.



[i] Jones G et al Measuring quality of life in women with endometriosis Journal of Human Reproduction July 06.


[i] Proctor M and Farquhar C Diagnosis and Management of Dysmenorrhoea BMJ 13.05.06

[ii]Mears Jo Coping with Endometriosis Sheldon Press 1996

[iii] Mills and Vernon Endometriosis – A key to healing through nutrition Element, 1999

[iv] Morris K Living well with Endometriosis Collins 2006

[v] Latthe P et al Factors predisposing women to chronic pelvic pain BMJ 01.04.06




[i] Proctor M and Farquhar C Diagnosis and Management of Dysmenorrhoea BMJ 13.05.06

[ii] Morris K Living well with Endometriosis Collins 2006

[iii] Morris K Living well with Endometriosis Collins 2006

[iv] Henderson and Wood Explaining Endometriosis Allen and Unwin 2000

[v] Hamilton-Fairley D Obstetrics and Gynaecology Lecture Notes Blackwell 2004



[i] Ballweg M Endometriosis – Taking Charge of your Life Endometriosis Society of the USA, 2003



[i] Kennedy and Gazvani The Investigation and Management of Endometrioisis RCOG 2000