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
   

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.

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

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[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

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[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

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

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