2016, Responses from: Dr VP Singh, Dr Keith Harrison, Prof Neil Johnson and Hannah Blakely
When is it the right time to discuss the possibility of further surgery?
My last lap was 2 years and 3 months ago. I’ve tried many medical therapies with some success, but symptom relief only ever lasts a couple of months at most, before bleeding starts and symptoms return with a vengeance. I have tried diet, naturopathy and various natural things as well, but haven’t found any lasting relief. I feel like there’s something inside me that’s constantly fighting whatever I try to do to ease my symptoms, and in the end the pain and bleeding always return. My Gynaecologist hasn’t ruled out further surgery, but wants to try everything else she can first. I realise that it’s always best to avoid surgery if possible, but I’m at my wits end and am wondering if it’s time to broach the subject?
So, in short, my question is, when do symptoms and failure of medical therapies to ease symptoms indicate that surgery could be required?
Dr VP Singh: It is such a common question and yet there is so much variability amongst practitioners.
In my view the first surgery is the best surgery and if the disease has been comprehensively excised then there is little point in going back in within 5 years. Concerted effort in managing pain with hormones, neuropathic pain medications, CBT, physio, exercise and diet will see most patients enjoy a comfortable and productive life. Jason Abbots study demonstrated the law of diminishing returns after the first surgery. Also it tends to reinforce the view that chronic pain can be cut out by surgery which is not the case. It is not uncommon for me to see patients who have had 7-8 surgeries on annual basis with worsening pain after each surgery. Setting up right expectations of ‘relief’ not ‘cure’ and Chronic pain management pathways generally succeed in these patients.
I think all endometriosis surgeons need to up skill in chronic pain management.
Dr Keith Harrison: Good question! I would consider repeat surgery at the point that symptoms become intolerable again and non-surgical treatments have failed which seems to be where this woman is currently at. I would want to know the extent and duration of symptom relief from her last surgery as a guide. Like this persons’ gynaecologist, I try to delay repeat surgery as long as possible especially in younger women
Prof Neil Johnson: Interesting question and, yes, one commonly asked …
The gynaecologist is wise to explore non-surgical options. These would doubtless include evidence based options such as progestin hormones or the oral contraceptive pill, the Mirena intrauterine system, even GnRH analogue injections with addback hormone therapy. Prior to a new medical therapy, have dietary and lifestyle factors been reviewed such as more ‘natural’ evidence based alternatives, such as vitamin B1 and B6, magnesium and fish oils and acupuncture as an evidence based complementary approach? The holistic multidisciplinary approach may include pelvic floor physiotherapy and / or psychology given the often distressing toll chronic or persistent pain can take.
Repeat surgery – especially in the same setting – is normally associated with less successful results than primary surgery. Sometimes consultation with a recognised advanced laparoscopic surgeon might be worthwhile. And if repeat surgery is considered to be required and is undertaken, it is often useful to combine this with another intervention (such as Mirena insertion at the same time, although there are other options) in the context of a recurrence of symptoms after primary surgery.
Hannah Blakely: Manging these decision making processes can be challenging in knowing when the timing is right. People who live with endometriosis may experience chronic pain. This is often described as persistent pelvic pain that lasts for over six months with pain on more days than most.
One consideration may be the impact of pain and other physical symptoms on your mental health. If pain becomes overwhelming and is not adequately managed it may be time to look at other treatments and support. One of these may be discussing further surgery. In addition to this, seeking psychological support for help in management of anxiety and/or mood problems may be appropriate.
Indicators of anxiety becoming a problem may be the following: Finding yourself worrying about your endometriosis/health/pain/and its impact etc., frequently for periods in the day or night. When worrying you have trouble shifting your attention to the things you are doing or wish to and/or it gets in the way of you attending to the things you want to be doing. The worry has been present and distressing to you for a period of months and feels uncontrollable.
Mood and symptoms of depression can be a common problem for women managing endometriosis. Things to consider when checking in with your mood are: feeling down, depressed or irritable most days, more often than not, consistently over a two week period. Lacking pleasure or enjoyment in the things you would normally do as well as a change in sleep, appetite, motivation and energy levels for example.
Other things that can be impacted upon by chronic pain and endometriosis is sexuality, intimate and general relationships, and sleep.
Psychological treatment for these difficulties provide strategies to reduce symptoms of anxiety and depression and manage problems in other areas, which may occur before after or in spite of surgical treatment options. Some women find one to two sessions to ‘check in’ with how they are coping is enough, for others more than a few sessions is helpful, and for most, knowing you’re doing the best you can is important.