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.

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.

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!

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.

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.

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

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.

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!

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.

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.