Practice A Patient’s Journey

Endometriosis

BMJ 2010; 340 doi: http://dx.doi.org/10.1136/bmj.c2661 (Published 10 June 2010) Cite this as: BMJ 2010;340:c2661
  1. Julie Harvey, patient 1,
  2. Ian Warwick, general practitioner2
  1. 1Lisburn
  2. 2Lisburn Health Centre, Lisburn BT28 1LU
  1. Correspondence to: J Harvey julesharvey{at}yahoo.co.uk
  • Accepted 8 May 2010

During the 15 years since endometriosis manifested itself, a large number of medical and surgical interventions, many of them unpleasant, have produced no sustainable benefit

Periods are an unwelcome fact of life to teenage girls; unfortunately pain, too, seems to be an accepted part of womanhood. I can’t remember when my period pain started—it was just always there. I happily colluded with my general practitioner, female relatives, and friends in thinking that period pain is normal. I would try not to talk about it, reach for the painkillers and hot water bottle, and get on with things. I was put on the contraceptive pill aged 14 and regularly missed school and later university and work, but every time I mentioned the pain it was put down to growing up and I was given another prescription for mefnamic acid or a different brand of the pill. It makes me angry to think of the missed opportunities for referral to a specialist, diagnosis, and potential treatment before my endometriosis became so severe.

It didn’t help that, like many young people, I moved a lot. I had six GPs within as many years. The one constant was heavy, prolonged, debilitating periods.

By my early 20s I was working as a teacher, taking the mini pill, and using mefnamic acid, paracetamol, and ibuprofen. My visits to the GP were becoming more frequent, but neither I nor the GP connected the diverse, developing symptoms: nausea, spotting and prolonged bleeding, diarrhoea, and constant tiredness. In the summer of 2005 everything came to a head with some particularly bad period pain that became chronic. My mother wasn’t to be fobbed off, and I was eventually hospitalised for several days and given a prospective diagnosis of endometriosis. It was the first time I’d heard of the condition, and it took me a while even to learn how to pronounce it.

Over time, I have become better at communicating with medical practitioners and have educated myself about my illness and what I can do to help.

When the possibility of endometriosis was raised I couldn’t understand why they wouldn’t undertake a laparoscopy immediately. I’d been suffering for 12 years and was now unable to work; my whole life was on hold and yet I was being told to wait another three months. In desperation I went for a private appointment. After an initial examination the consultant scheduled me for an emergency laparoscopy the following week.

I thought this would be the answer to all my problems; my surgeon told me the risks and quoted a 70% success rate at his clinic. I needed a second operation as the endometriosis was too severe to treat initially. I had extensive excision of endometriosis and adhesions, but at the time it was presented to me as “only keyhole surgery; you should be back at work in a couple of weeks.” I now know that I had a major operation and that not all laparoscopies are equal in terms of recovery. When my symptoms persisted, I felt that I was doing something wrong, complaining too much, or that my body wasn’t reacting as it should.

Several months later, after abortive attempts to go back to teaching had ended in being hospitalised and I’d started on a course of gosarelin, I decided to give up my job. It was the right decision, as I wasn’t well enough to work and needed the support of my family, who didn’t live close by, but it took me a long time to adjust. I suddenly found myself moving back from Southampton to Belfast, living with family, unemployed, broke, ill, and still in as much pain as ever.

My new GP was sympathetic, and with some further trips to hospital for emergency pain relief we established a regimen to follow at home. I switched to opiate patches, along with oral morphine for flare-ups. I am now thankfully able to manage my breakthrough pain at home. A TENS machine and basic meditation techniques have proved useful.

I have to take a lot of drugs just to function at a reasonable level. I have become used to the horrified looks from medical staff taking my history, and the implied criticisms of dependence and addiction. Endometriosis can cause pain and fatigue, fertility problems, sex and relationship issues, and it can sap all your strength, but it’s an unseen disease. The incommunicable nature of pain combines with the social taboo of discussing “gynae” issues to make many sufferers feel very lonely.

One of the problems with treatment is that none of it is guaranteed to work, as the disease isn’t fully understood. From my surgeons’ point of view, each of my operations has been successful—but from my point of view, surgery hasn’t worked. The medical treatments I’ve tried have been unpleasant and lacking in any sustainable benefit. Gonadotrophin releasing hormone analogues and the Mirena coil had horrible side effects. For several months now I’ve not been taking drugs that interfere with the hormonal cycle, and it’s a great feeling to have regained my hormonal independence.

I’ve been seeing a gynaecologist who specialises in endometriosis for the past two years. If the surgery I had a year ago doesn’t provide any reduction in pain then I’ve exhausted all the current gynaecology options. There’s no point going through the stresses of surgery without a good chance of success. In a strange way this is helpful, as I can get on with coping rather than expending energy on a fruitless search for a cure.

Five years after diagnosis, I’ve just about come to terms with my illness. It still gets me down when I have to pull out of social plans, or when my latest attempt to go back to work in some part time, voluntary capacity fails. I am active and ambitious—staying home reading all day doesn’t come naturally, but I have to pace myself as activity brings on pain and my energy levels are low. Recently, however, I have been on a condition management course via the local Job Centre, which has been very useful.

The nature of endometriosis is especially frustrating. The pain is random, and though I might have several better days in a row, the threat of severe pain is always there. I would love to be able to live independently, but I know that I am just not physically able to cope alone.

It’s hard to manage financially, and the loss of employment combined with existing on benefits (state support) has had a negative impact on my self esteem, as has the never ending process of proving that I’m entitled to benefits. I feel an acute pressure to “fit in” and justify my circumstances. At the age of 30, I should be progressing in my career and setting up my own home. Endometriosis robs young women of their futures.

I have had amazing support from friends and family, especially my mother and my boyfriend of two years. One of the strange aspects of chronic pain is the desire to communicate the experience—to have a witness to your suffering—and they have helped me most just by listening and holding my hand.

I was initially extremely nervous about dating and becoming emotionally or physically intimate, and blurted out to my boyfriend the whole history of my illness early on. I expected him to run away, but he has been patient and understanding. Sex can be especially painful, but by talking about it and making sure we remain close in other ways it doesn’t cause problems in our relationship.

I have fears for the future. Pain has been my main symptom, but as I get older fertility is likely to become a bigger issue. A hysterectomy is a choice I may have to face in the next few years. Then there is the possibility that trying to conceive would not be easy, nor would caring for a young family while in pain.

I try to take each day and week as it comes, to enjoy the days when I am able to be active and accept those when I am sore. Being ill has shaped my interests; I am now a member of the BMA’s Patient Liaison Group and would like to pursue a career in health policy, and to continue to raise awareness of endometriosis and chronic pain.

My pain is part of me and has changed and shaped my personality. I can put things into perspective and don’t get anxious over the small things. Life doesn’t always go your way; the trick is to adjust your expectations accordingly and make the best of it.

A doctor’s perspective

Julie’s case provides a good example of some of the problems encountered in managing someone with chronic pain, especially when that person is young and unable initially to articulate their difficulties.

By the time I first met Julie in 2006 she had already consulted with several doctors and had been given several opinions as to the cause of her pain, so it felt very much as if I was “coming late to the party.” Our first consultation ran over time, and it was clear that her frustration with the advice she had been given before our meeting was making it difficult to establish a rapport.

I admit that I was initially sceptical. Why was this bright, apparently healthy girl coming to me with a list of complaints and requests for several strong and potentially addictive drugs; was this somebody just trying it on with the next available doctor?

It didn’t take long to realise, though, that Julie was in fact very genuine and able to state her case forcibly. Indeed, to all intents and purposes Julie is an “expert patient.” This was both helpful and challenging—helpful in that she was able to understand in detail the rationale behind treatment, allowing an informed decision to be made; challenging in that she often knew more about the subject than I did.

Over the past few years we have shared many ups and downs when treatment that initially seemed to be beneficial lost its effect, and it has been challenging to respond to these changes. Her treatment has often involved polypharmacy, occasionally with rarely used drugs, and it has sometimes been difficult to decide whether Julie’s symptoms were a result of her illness or had an iatrogenic origin. To this end I have been fortunate to have the help of several excellent colleagues.

Those who are privileged to provide continuity of care (still, I feel, the bedrock of general practice, despite modern working practices) will appreciate the difficulty in motivating a patient during difficult times.

As in many such cases, I have felt a degree of hopelessness at my lack of ability to change Julie’s management for the better, but you can still provide support by simply being a listening ear.

Ian Warwick carol306{at}btinternet.com

Useful resources

  • Counselling—I paid for sessions, at a reduced rate, through a disability charity as the NHS waiting list is so long and I’m not in the most need in terms of psychiatric care

  • Patient support—the friendship and support from the Belfast Endometriosis (and Hysterectomy) Support Group has been invaluable, and I have learned a lot from the website Pelvic Pain Support Network (www.pelvicpain.org.uk). Talking over my experiences and listening to those of others has made me realise I’m not alone and things can improve. It’s easy to lose hope for the future—but seeing the turnaround in other group members’ lives after successful treatment gives me renewed hope

  • Pain clinic—I now see an NHS pain specialist and have started trying some of the clinic’s treatments. I am currently undergoing a course of lignocaine infusions, but it’s reassuring to know of other possible options

  • Expert Patient Programme—this NHS programme (www.expertpatients.co.uk) is not run in Northern Ireland, but I have found help with the Condition Management Programme for benefits recipients, and I’ve researched pain and relaxation myself

  • Aromatherapy—in 2006-7 I had a course of “palliative” aromatherapy massage and reflexology at my local hospital. This service has since been cut

  • Physiotherapy—I suggested to my GP that I be referred for gynaecological physiotherapy after researching it online—this has been very helpful

  • Acupuncture—I get reduced price sessions through a local charity

  • Citizens Advice Bureau—has been invaluable in helping me to fight for the benefits I should be getting (www.citizensadvice.org.uk)

Notes

Cite this as: BMJ 2010;340:c2661

Footnotes

  • This is one of a series of occasional articles by patients about their experiences that offer lessons to doctors. The BMJ welcomes contributions to the series. Please contact Peter Lapsley (plapsley{at}bmj.com) for guidance.

  • Competing interests: None declared.

  • Provenance and peer review: Commissioned; not externally peer reviewed.

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