In the autumn of 2018 I found myself two surgeries in and no better off. The last surgery carried out was a diagnostic laparoscopy, ablation of my endometriosis and fitting of a mirena coil.
Check out my post where I discuss the lack of success I had with this. https://peskypelvis.com/2019/02/04/my-journey-to-a-diagnosis-part-2/. As I mention there, having found no relief from this, and being turned away by the surgeon who performed it, I decided to do some research of my own. I want to discuss the differences in ablation vs excision surgery and the things to consider when deciding which to have.
When are surgeon uses ablation to remove endometriosis either a cautery or laser is used to burn the endometriosis away. In contrast excision surgery involves the surgeon cutting away (or excising) any endometriosis.
I found so many stories of women where ablation surgery had not given them the relief they had wanted. I had spent so many years wishing for a diagnosis then when I was given one, it felt rather anti-climatic. A diagnosis is a powerful thing, without one I was far more likely to be dismissed by my G.P and other consultants that I was referred to, I was less likely to be offered adequate pain management and I found it harder to communicate my condition to my employer. A diagnosis helped me emotionally and mentally deal with the symptoms i was experiencing, it allowed me to give myself a break once in a while and cope with the changes to my life my symptoms dictated.
This being said a diagnosis is only helpful if the medical care being offered for that diagnosis is well researched, patient driven and that treatment is readily available. Whilst signed off following my second surgery I spent hours looking online for people’s experiences which were similar to mine, hoping they could help. I came across a group on Facebook called Nancy’s Nook endometriosis education, after becoming a member, this resource became invaluable to me. Set up by Nancy Petersen a health professional who has suffered with endo herself and has been an advocate for the community for years.
This group put me in contact with a consultant that specializes in non-invasive surgery and endometriosis excision. Again I was so incredibly fortunate to have health insurance through my employer. This particular surgeon had worked with NHS patients for many years but due to several factors now only treated private patients. My experience with an excision specialist was as far removed from my previous experiences as you could get. My doctor spent time discussing my symptoms, how debilitating my pain was and at no point tried to dismiss my illness or what I wanted out of the appointment. For me the moment I realised that my previous experience with doctors wasn’t the only experience available to me was when my doctor asked me what I wanted, whether that was further surgery, medication or physical therapy, or all three. I think so many of us are so used to being told what we need to do to our bodies and for our health that we’re always a little taken aback by a doctor not only offering to treat us but also offering to listen.
The pros of ablation surgery are limited to financial gains(if you’re not being treated on the NHS or indeed in the UK at all). Here in Britain, in the USA and i’m sure in most places it is still far more common for surgeons to use ablation when removing and treating endo. Meaning it is easier I suppose to find a surgeon willing to practice this technique and if not within a state funded health care system considerably cheaper.
One thing that can be considered an advantage to ablation is the recovery time. The surgery in itself is less invasive than excision surgery (generally). The time it took me from having my ablation surgery to being back at work (on limited duties mind) was ten days. It took me over 4 and a half weeks to be back at work after my excision surgery. So expect a longer recovery time!
That’s really where the advantages stop. It has been found that recurrence of symptoms following ablation surgery is staggeringly higher than that of excision. Perhaps leading to further surgeries that may not have been necessary if excision surgery had been performed. Of course that’s not to say excision surgery in itself is a magic cure either!
Another thing to consider is the experience of the surgeon. Those that perform excision surgery have usually spent years studying their techniques and treating a wide variety of disease. These surgeons will often have more experience identifying disease. Many will know the story of having your laparoscopy and being told no endometriosis was found only to have further surgery and extensive disease then be found. This extra experience often means the surgeon is able to treat more complex disease on a range of organs and structures, and if they can’t know when to refer you to someone who can.
It’s pretty evident from this which technique I feel is the superior, however i am all too aware that not everyone will have the option to select their consultant and surgeon, not everywhere will have the same amount of provision and many will simply not be able to afford the privilege. I hope though knowing that ablation is not the only option, will at least enable you to equip yourself with as much information as possible and give you the chance to access the best healthcare you possibly can.
For those of you in the UK please check out British Society for Gynecological Endoscopy here https://www.bsge.org.uk/endometriosis-centres/. You can use their resources to find a endometriosis specialist including excision specialist who treat privately AND through the NHS.
Please also take a look at Nancy’s nook facebook group. https://www.facebook.com/groups/418136991574617/. This group has been an invaluable resource for me and has made me feel so much more informed about this disease and the treatment available.