It’s a sad fact that, for many of us, the medical options I outlined in my last post won’t be enough to fight back against the endometriosis growth. The next step in the war on endo is to take to the hospital bed and literally go at it with a knife (well, scalpel, and don’t try this at home, kids). But what should you expect with your surgery? What do you need to know? What are the risks?
Types of Surgery
There are three main types of surgery on offer for endometriosis patients in Australia. First, though, I want you to picture our little endometrial growths as pimples. If you don’t like that metaphor, go with icebergs. The point is, the growths have a visible head on the surface of whatever they are growing on, and a root going back into and below the surface. Just like a pimple. Or an iceberg.
The first type of surgery is ablation. This is where the surgeon basically takes a hot instrument and burns the visible part of the endometriosis down to be in line with the surface of the organ, cauterising the top. In a way that’s good, because the bits that would normally be exposed and get irritated and cause pain are now hidden. But here’s the thing about endo – it grows. With ablation, the root is still there and the growth will rear its ugly little head again. It’s like shaving your legs rather than waxing (if you shaved with a flamethrower) – the head of the hair is cut off but the root is still there and in a few days (or months or years, for endo), you’ll have stubble. For this reason, it is not the gold standard for surgical treatments of endometriosis.
A couple of notes on ablation:
- There is a similar technique called fulguration, which uses electricity to achieve a similar effect. Both may be done together in some cases.
- Ablation of endometriosis should not be confused with endometrial ablation, despite the absurdly similar names, which is where a surgeon sticks the heat tool up your vagina into your uterus and burns away the inner lining. This is a treatment some doctors suggest for heavy or lengthy periods (I have no idea if this is a good idea or not) and will have no effect on your endometriosis.
The second type of surgery is excision. This is more like waxing than shaving, because here the whole growth is removed. Perhaps a better comparison is mowing a lawn of weeds down to ground level, vs actually digging down into the earth and removing the whole weed, root and all. That’s what the surgeon is doing here, albeit with proper medical tools rather than a trowel (one hopes). The theory is that it will take longer for the endometriosis to regrow, if it regrows at all, because there’s no root left for it to grow back from.
That’s why excision is considered the better surgery, so you should always ask if your surgeon is an excision specialist to ensure that you are getting the best possible surgical treatment. No point putting yourself through the trauma of surgery for something second best.
Bear in mind, though, that not even excision can get every growth. You may be left with some too tiny for the surgeon to get, or that are still forming and haven’t become visible yet.
Hysterectomy or other organ removal
Far and away the most dramatic of our Australian options, a hysterectomy involves the removal of not just the endometriosis, but part or all of the reproductive organ it is growing on. For some people this may be just an ovary, or part of the uterus; for others, it may mean the entire uterus, ovaries and fallopian tubes.
For those with more of a problem with endometriosis growing elsewhere, something like a bowel resection may be needed, with part of the bowel being taken out and the remaining chunks being stitched together. It’s like if you chopped a piece of string into three chunks, threw away the middle chunk and tied the two end chunks together.
Partial or total removal of organs really is a last resort. I cannot stress enough that it is not a cure. Endometriosis can still reappear on the remaining bits of the organs, or on new organs completely. It just can’t reappear where it was because those bits are literally no longer there. Many doctors are reluctant to perform surgeries of this kind because of how extreme they are for what may be no extra benefit. Surgeons are particularly reluctant to perform hysterectomies on women of child-bearing age, because it has such a severe impact on your fertility. This can be the case even where you assure them you don’t want more (or any) children, because they don’t want to get sued.
There is on other surgery I would like to mention, although as far as I can tell it isn’t available at all in Australia right now. My surgeon had never heard of it and scoffed. There was a British surgeon call Dr Trehan who pioneered and practised a surgeon called Total Pelvic Peritoneal Excision, which removed not just the growths, but the surface tissue on every single affected organ (not the organs themselves). He claimed that this extensive surgery resulted in an extremely low rate on endometriosis regrowth. All the patient reviews I’ve read seem to agree that the surgery is life-changing. Unfortunately, he has since retired, but I do believe a gentleman called Dr Edmond Edi-Osagie is still practising the technique in Manchester. I’ve made enquiries about a Skype or telephone consult and will keep this blog updated with the results. Fingers crossed he is still practising!
It is really important that I discuss this because surgery always comes with risks. These are a few of the big ones to be aware of.
Complications with anaesthesia
Any time you go under anaesthetic you run the risk that something could be wrong with just that part of a process, totally unrelated to the surgery itself. You may have an allergic reaction to it. You may experience complications breathing. A clumsy anaesthetist may knock your teeth down your throat with their tubes. These are all things your anaesthetist should speak to you about before surgery. If you have veneers or crowns on your front teeth, let them know. If you’ve had bad reactions in the past, let them know.
A massively common “side-effect” of surgery is developing an infection. This may be through a surgeon’s negligence, but more often it is simply because hospitals are incredibly germy places, endometriosis-sufferers have depressed immune systems, and your body is under a huge burden trying to recover from being cut open.
If you notice any redness or swelling at the incision sites, suffer a fever, or feel pain that concerns you, please get follow-up care ASAP to ensure that the infection does not develop to dangerous levels.
A slip of the scalpel
Operating on endometriosis is incredibly delicate work, and always carries the risk that the surgeon will miss what they are aiming for and slice something they shouldn’t. This does not happen often, but it can, and the results can vary from some extra pain to big bad stuff. A wrong cut on the bowel, for example, could result in infections, further surgery, or a bowel resection and colostomy bag. A slip on the uterus could leave you with nerve damage.
If you have any concerns about this, ask your surgeon before you go under and ask what they plan to do if something does go wrong. In non-life-threatening situations, they may terminate the surgery, wake you up, explain what has happened and get your consent to go back in and fix it. In a life-threatening situation they may need to act then and there.
It is possible that your surgeon will not be able to get all of the endometriosis. The stuff that remains may be irritated by the surgery and cause a flare-up. This happened to me in a big way and I was not warned about this as a possible side-effect, so I want other people to be aware that it is a thing. Any nerves exposed by the surgery may also be raw and painful for a while.
There may be other risks that I am not aware of. If you are feeling nervous about the surgery, make your surgeon take the time to go through it with you. Canvass the possibilities. Find out what your surgeon will do in an emergency. Talk with other people who have had a similar op and check their experiences.
Although I may have seemed like quite a downer on surgery in this post, remember that for many people it can provide years of relief. Others may have only months; others may not feel it helps at all. Everyone is different, so whilst it is useful to hear how others benefited or didn’t, remember that their recovery is not a template for yours.
Please comment below about your surgical experiences. What type did you have? Did it help? Anything you’d like to add?
In my next post I’ll be talking about some tips to make it through surgery and the recovery as easily as possible.