Is there a best way to treat endo ? I am 21 and have suspected deep Infiltrating endo and ovary stuck to uterus (shown in an mri). I had a call with a gynaecologist today after waiting months, I was hoping to be put on a waiting list for surgery to remove the Endo, as I am in pain everyday. The gyno was adamant medication was a better choice and that laparoscopy to remove endo would only cause more problems... I have read excision surgery is the gold standard treatment and meds only mask the symptoms. Especially if I have deep endo would meds even work that well ?
Any info on this topic Or hearing others experience will be appreciated
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mayfe123
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Hey I am sorry you have had to wait so long and that the news was disappointing to you, must be really frustrating. Did the dr explain to you why he thought laparoscopy was not the right option? You are entitled to contact for further clarification and even to get a second opinion. Best wishes, Lauren
Some surgeons will say that hormones work better, but that's usually because they are not endo specialists - they're general gynae so know they do not have all the skills to correctly identify endo on all parts of your abdomen. They will only look at the reproductive organs on their own (uterus, ovaries and fallopian tubes - that's it). General gynae won't consider excision, they'll only do ablation or diathermy, which are both quicker operations but don't remove the endo completely.
It's worth noting that endo can quite often appear on the bladder and bowel (more often the bladder) so you ideally need to see an endo specialist. Because they're specialists they'll want to get to the cause and remove it altogether, that's why they choose excision - it cuts out the endo, regrowth is less, it is a more complex operation simply because it requires knowledge of all the organs and structures.
For some women hormones do help with symptoms, it can slow endo growth but it'll never stop it so eventually most women need excision surgery. It's your decision but the deep infiltrating endo suggests it's affected a few organs and needs expert excision.
Here's the guidelines on what all doctors in the UK should be doing regarding endo diagnosis and treatment, it may be worth a read.
I've been on hormones - undiagnosed endo, they stopped working after a good few years and even taking them back to back for 4 months in a row. I thought something wasn't right, so pushed for a specialist referral. Fast forward to surgery, stage 4 endo (which means all over all organs and almost perforating), if I'd left it longer, even just a year, I could have needed more invasive surgery (laparoscopy to a laparotomy and a bowel resection - bag). Looking back and advising someone, I'd say; push for the diagnostic lap with excision with an endo specialist, that gives most women a few years of no symptoms, at least then when the symptoms start to come back you know it's only mild endo so you could then consider hormones to have a normal life until you're ready to have another lap, that time it could just be diagnostic to take a look at what's going on.
Yes surgery does have complications like any surgery, and there are risks, there could be scarring as a result of the endo being removed, there are stitches, but a good endo specialist will reduce those risks as they are experienced.
So what you'll need to do: go back to your GP and say you're not happy with that general gynae's assessment and would like a second opinion, could they refer you to an endometriosis specialist. You may be able to google ones in your area, that could give you some names. They may be listed under gynae but have an interest in endo, heavy periods, can do laparoscopies, including excision surgery etc, which is fine too.
One thought ....You want to have the fewest number of operations possible, and you are young. The difficulty is that endo returns after excision in something like a third of patients. If your pain symptoms can be improved for a while with hormonal treatments, I can see how it would be worth a try because the reality is that a lot of women with endo will have to be on hormonal treatments even after excision surgery or between surgeries. Hormone blockers that create an artificial menopause can shrink endo and even the contraceptive pill can stop it getting worse, and can help pain symptoms etc. That much said, I agree it sounds like you will need surgery at some point so why not before it gets too much worse??!! .... Is your gynaecologist an endo specialist? You should be seen by someone at a BSGE centre ideally.
This consultant has advised you completely against guidelines and standards. Medical treatment is not appropriate for deep endo - it might help with symptoms related to the uterus by stopping periods or by reducing systemic inflammation but it will have no effect on controlling the disease itself. The disease will still progress while on medication.
When deep endo is found /suspected you must immediately be referred to a specialist endo centre. This is actually prescribed in law in England by the Health and Social Care Act, 2012. Theses centres are in tertiary care and commissioned by NHS England and not the local CCG. Be sure you GP is told this as they are unlikely to know - referral is direct to the centre with copies of the relevant documents/scan reports etc that your GP has.
The treatment specification that should be followed is below - have a really good read and then I would copy it and give it to your GP with a request for referral to a centre. The lists are long at the moment due to Covid so the sooner you get referred the better.
Quote from specification:
'Treatment involves medical methods to suppress the female hormones or surgical treatment to destroy or remove the disease or the affected pelvic organs. Medical treatment is only of benefit in mild cases. Surgical excision is the recommended treatment in moderate or severe disease (2). Removing endometriosis from the pelvic tissues requires considerable surgical skill and expertise, as it is often close to vital structures like the ureter, bladder or bowel. It is best performed using laparoscopic surgery with two skilled laparoscopic surgeons working together, as this enables excellent visualisation of the deep pelvis which facilitates the very delicate surgery required and joint expertise enables joint decision making during critical steps of the operation. In contrast, open surgery often results in incomplete excision of the disease. Incomplete excision will result in inadequate treatment, with failure to resolve symptoms and makes repeat surgery even more difficult.
National criteria (British Society of Gynaecological Endoscopy [BSGE]; bsge.org.uk) now exist on the standards of service and workload required to undertake surgical excision of advanced endometriosis and this is driving the establishment of endometriosis centres where such work can be undertaken by specialist multidisciplinary teams.'
Wanwood:If your pain symptoms can be improved for a while with hormonal treatments, I can see how it would be worth a try because the reality is that a lot of women with endo will have to be on hormonal treatments even after excision surgery or between surgeries.
My experience was like this, deep infiltrating endometriosis.
Treatment started initially with hormonal treatments (continous pill, later on GnRH), had my first endo surgery, few years later another and now back on hormonal treatment.
I recommend finding a specialist endo gyno and discuss the various treatment options and don’t forget pain management (what I find helps me: heating pad, hot bath to take the edge off and Aleve).
You could try medication first and see if that offers relief.
Maybe you could ask the gyno how endo affects your fertility and methods of conceiving, even if it’s not something you’re thinking about at the moment it’s something for the long term to be aware of.
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