Tuesday, December 18, 2007
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
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
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
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.
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'.
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
I am hoping that things will be better this time around with the Mirena now gone.
Friday, November 23, 2007
Since then, definitely had a period at the time the coil was removed - bled very heavily etc. Still in pain etc etc etc.
I really wanted to just return to Zoladex + Tibolone which has always worked for me. However, consultant wants me to have a few periods to see what has been achieved since the surgery. They will then organise for a bone density scan in March/April 08 and then I'll be seen in clinic in May.
If at that point things are still really bad, it looks like I will be able to return to long-term zoladex if my bone density is OK.
In the interim - got to have periods. The endo nurse said to let her know how my next one goes.
They have said I can contact them again if things get dire/see GP etc.
Really not sure how I feel about this - I think there is now a fear element behind having periods having had such painful periods for years and years, which cannot be helping me. Added to which the first post-lap period is always nasty, plus I was very unlucky with my Mirena. He asked me if I wanted another one... DUH - I think not!!
Friday, November 16, 2007
Friday, November 9, 2007
I am presently having a lot of trouble convincing my hospital consultant that when I do have periods I become very unwell; in a great deal of pain, can't work, can't do anything social, unreliable, very depressed etc. When my periods are stopped I can work and live properly etc, am reliable, am happy etc etc etc. You have all seen me in both capacities.
I am proposing to take supporting statements to my GP (initially) and then to hospital when I go back in 2 weeks time.
I think I asked some people to do this a year or so ago, but have lost the email.... (sorry).
Please could you all write something for me (it doesn't need to be very long) supporting my case. Please feel free to give any examples you need/want. Address it 'To Whom it may concern'
I would be really grateful if you could do this fairly quickly for me.
Many, many thanks,
TO WHOM IT MAY CONCERN
I first met MizzK nine months ago, when she applied for the post of Volunteer Coordinator with the charity A2A. As a Trustee of the charity, I was on the interviewing panel. She impressed us with her creative and dynamic approach to the post, which she immediately upon her appointment, set about implementing.
As I have come to know MizzK better, I have discovered some of her many other creative sides and continue to be impressed with the energy, both mental and physical, which she gives to everything she undertakes.
However, since Mizzk most recent operation for endometriosis, I have become increasingly concerned about the effect of her periods on her ability to manage her very full and active life on a day-to-day basis. This lifestyle only became possible when her previous medication allowed her complete freedom from pain for the first time in her adult life. I know she is pushing herself to the limit in order to keep up with her work commitments, but the stress and anxiety of knowing that she will be in severe pain for two out of every four weeks of her like for the foreseeable future, must be very hard to cope with.
I did my best though to overcome this through doing some ballet, and then I had my writing class, and just felt quiet and very flat.
I was going to shirk going to a concert I had paid for this evening, but since it was some of my favourite music, (Bach Violin Concertos), I pushed myself into going. The church and the music were beautiful, but the tears were streaming down my face. In addition to that, the pain had come back somewhat, so there were tears being shed not only for feeling sad, but because my tummy hurt again.
I have come back to a lovely response to my 'evidence-based' medicine and request for support from close friends and family as to how I am with/without endometriosis. I am going to post these on this Blog.
Thursday, November 8, 2007
He said that, 'I no longer have endometriosis' because he removed everything in September, and that if I am in pain now, there is another cause. We talked some more and I said well, how come I am fine when I am on Zoladex and my periods are stopped? He said I couldn't keep taking that because my bone density was low. Then we talked about the Mirena which he had put in at the time of the lap.
I was so upset by this point that I asked if I could continue the consultation only when a very close friend of mine arrived.
I was crying my eyes out in reception in so much pain, so they took me to a consultation room, and eventually my friend arrived. They asked if I would like to have the Mirena removed, to which I replied, 'yes'.
When it came to taking it out the most painful bit was having the speculum put in place. As it turned out, the Mirena had come out of place and was in my upper vagina, and no longer in the uterus at all, and it appeared (as my GP thought) that my body had been rejecting it all this time, which explains the very severe pain I have been having.
When the consultant came back in, my friend was brilliant and was saying how poorly I was and she has often seen me like this, but also seen me really well, when on Zoladex.
Consultant wants me to be seen by pain management - which I have done three times over in other hospitals, so I feel it is a complete and utter waste of time.
Anyway for now, the upshot is he thinks my pain should really settle down (again) now the Mirena is out, and I might be OK. I am being reviewed again in 2 weeks by the endo nurse when I am going to ask to have my bone density re-tested, otherwise I am going to have to consider moving consultants again.
I am supposed to be with a good team - but to be honest, they cannot leave me to live like this as I have no quality of life. If he does, there is no point at all in going on.
Anyway, sorry for the rant. I am utterly exhausted now and in less pain than earlier, so going to have a bath and go to bed.
Wednesday, November 7, 2007
I saw my GP yesterday who kindly prescribed me Oramorph (a liquid form of Morphine), but she shouldn't be doing this because I really shouldn't be in that much pain. This is not a long-term treatment solution.
My GP thinks that my body is desperately trying to reject the Mirena coil which explains the muscle spams and the particular tenderness in the area.
I am now being seen at hospital tomorrow instead of 6th December. I want the Mirena removed and either to return to Zoladex again, or to be reconsidered for a hysterectomy.
One piece of good news is that I have lost some weight - 4kg last week, and I think some more this week. My target weight is 70kg.
Friday, November 2, 2007
Firstly I have had breast pain for the past two weeks and then back/pelvic/'period' pain since Wednesday. So far I have had very little bleeding, but the pain is just awful and is going down my inner thighs and into my inguinal ligament.
I seriously cannot take this for much longer and not for another 20 years. It looks like I am going to be begging my consultant to go back on Zoladex when I see him.
Wednesday, October 10, 2007
Monday, October 8, 2007
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
I produced this piece of research last year which looks at women who have endometriosis and their ability to work (or not).
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
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)
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)
· Commonest Endocrine disorder in women
· 1 in 5 have it or 15-22% of women
· Irregular/no periods
· Acne, increased facial hair
· Insulin resistance www.bbc.co.uk/health/conditions/metabolicsyndrome1.shtml
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.
· 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
· 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.
· 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?
· Pouch of Douglas
· Rarely – further afield – e.g. lungs
· Painful periods
· Painful sex
· Bowel symptoms
· Bladder symptoms
· Chronic pelvic pain
· Ovulation pain
Heavy periods are NOT a symptom of endometriosis, but a factor that leads to endometriosis
How to diagnose Endo
· Medical history of the patient
· Ultrasound Scan
· 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 –
· 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
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
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
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
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
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
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
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
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.
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
Thursday, August 30, 2007
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
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
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
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.
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?
Thursday, August 23, 2007
Tuesday, August 21, 2007
Here is another 'Endometriosis' article I have found:
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.....
Monday, August 13, 2007
Sunday, August 12, 2007
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.
· 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!
· 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.
Friday, August 10, 2007
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.
I am presently happily on the GnRH analogue treatment method (Zoladex) which works really well on me.
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
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
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.
- 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.
- 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!
- Demand plenty of anti-nausea medication. The last thing you want to do is to end up being sick.
- Demand plenty of painkillers, regularly!
- Rest a lot and remember that it will take a while for you to get back to normal.
- Be aware of post-anaesthetic blues which can kick in a few days after the operation
Saturday, July 28, 2007
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:
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
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.
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]
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
Management of Endometriosis
Endometriosis is often a complicated condition to manage so I am separating pain management from 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