Hi all, I'm reaching out for a bit of hope and help!!
I had my first lap in April this year and endo was found in my pouch of Douglas. It was burned away or ablased, so to speak. Since the op, I have been put on a contraceptive pill to manage my symptoms but with zero success. My flare ups, especially endo belly are worse than ever! I'm constantly feeling unwell and have some sort of pain so I'm going to see an endo specialist next week.
Since my op, I've been told by a few endo sisters and through reserarch I've found out that ablasion doesn't actually do anything, just burns the top layer away and my symptoms are likely to be persisting because the tissue should have been cut away instead!?
After my appt next week I shall share what I'm told but just wondering if anyone has had this same experience with ablasion surgery?! Or no relief after a laproscopy?
Thank you x
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Amy-Marie
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I can't advise too much sadly as I'm having my first operation for endo at the end of the week, but when I saw the consultant (and he is the top dog in this city apparently for endometriosis, he teaches all the surgeons for it) he told me that the cuts out the endometriosis, and only burns away the superficial parts. The way he said it I assumed it was just routine to cut it out!
He said it was like a tree, you have the cut out the roots, or it will only grow back.
Are you in the UK? Just there's certain rules around who should test different stages of endo.
Ablation isn't a great way to treat endo as it leaves anything that is below the surface. Where as excision cuts it out from the root. If you think of it like cutting the top of a weed of vs digging it up by the roots. This could be why you haven't had any relief of symptoms.
Okay based on it being in the pouch of Douglas a general gynecologist shouldn't have done anything. You need to get a referral to a bsge centre (you can Google this to find where is close to you) depending on where in the UK you are depends on how you do this. But pouch of Douglas endo is an indicator of having a more surgically severe endo which requires specialist treatment not general.
Oh really?! I wish I had known this! I've privately booked myself in with an endo specialist who I believe is in a BSGE centre but until 2 weeks ago, I didn't know this even existed! Still waiting on the NHS since November so just going to pay as my symptoms are getting so much worse. Thank you for the info x
Okay well I know some pay for a private appointment. And then ask to be referred on the NHS for the surgery as that is the costly part. To check if they are currently listed on the bsge website. Google BSGE centres and search for the hospital you are being seen at to see if they are listed as one of the gynecologists. A hospital cab have an endo centre but that does not mean all gynecologist are equally skilled and trained so it's only those listed on the bsge website that are counted as specialist.
Hi there, I’m in the same boat as you. Ablation surgery done 2 years ago and symptoms got progressively worse about 1 year after the surgery. Ablation has high failure rate within 2 years. I’m on continuous pill but no relief. I went back to general gynae and he’s prepared to refer me to excision surgeon. There are medical journals online that compare excision with ablation and long term outcomes. I also found nhs manual online which also confirms excision is the gold standard. ( see north Bristol ‘Information for you about Laparoscopic Excision of Endometriosis’ booklet). I’d recommend reading the information on Facebook research page ‘Nancy’s Nook’. Excision is definitely the best surgical option at present.
Hi, sorry to hear you're in the same boat! It's so frustrating isn't it!! Ive been on the waiting list to see a gynae with the NHS since November so I've given up waiting and paying to see a private endo specialist next week. I'll let you know what he says!! I hope exision gives you the relief you need too x
[This post has been edited in line with Endometriosis UK's code of conduct]
Ablation might make endometriosis even worse after surgery. This is the proof that it doesn't treat it at all and that surgeries involving ablation are a waste of time and strongly counterproductive and therefore advised against. Almost 100% of women who undergo ablation surgery need to undergo another laparoscopy within the next year because the pain is so unbearable. I suggest you immediately look for specialised help and book excision surgery or at least a great BSGE-certified surgeon with many amazing reviews and low recurrence rates
The pill helps mask the symptoms of endometriosis and sometimes regulates menstrual bleeding. For some people it doesn’t though.
I also had Endo belly and extensive Deep Infiltrating Endometriosis (including Pouch of Douglas). I say used to as I’ve just recently had a total hysterectomy and excision surgery etc.
Ablation is useless. Had that done in my first laparoscopy in 2010 and the Endometriosis persisted and spread (unknowingly)as I was put on the combined pill straight after. 7 years later I had Stage 4 - Deep Infiltrating Endometriosis and Adenomyosis.
Do your research and empower yourself to make the right educated decision and pick an experienced Endometriosis Specialist (Nook Specialist or BSGE Specialist). This group really helped me.
However, I must specify this is an Education Group not a support group. You have to answer 3 security questions and then you are given a week to read the Basic Introductory Education files (information on Endometriosis) before you can post or like a comment.
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