Diagnostic laparoscopy with ablation

[Chailattelove]

Dear All, I have a question following my first appointment at UCLH. I was seen at the gynaecology unit (not the Endometriosis Centre). Despite this, a consultant specialised in using ultrasound to diagnose endometriosis examined me and found mild endometriosis on my uterosacral ligament. I found this impressive and reassuring as other specialists had missed it for eight years.

I asked to be added to the surgery wait list, even though it was explained to me that it would not be in the Endometriosis Centre because they do not normally treat mild cases like mine. I looked into the background of the consultant who would carry out the operation and was reassured to find that he was experienced in laparoscopy.

I have only just realised, however, that my appointment summary states that the surgery I am waiting for would be a “diagnostic laparoscopy with diathermy”. I am quite confused now and uncertain if I want to go ahead with it because to my knowledge, excision is the gold standard and diathermy seems to be the same as ablation.

My question is- who can I turn to at the hospital to discuss my question around this (I don’t have another appointment scheduled in)? If anyone has knowledge or experience of diathermy as a treatment for (supposedly) mild endometriosis, that would be amazing to hear as well.

[Brambledoggy]

Me. Going to reply direct to you when I’m less busy this afternoon and give you my experience. Might help to read my profile and posts if you are able.

[Chailattelove in reply to Brambledoggy]

Thank you, Brambledoggy - really appreciate it.

[Brambledoggy in reply to Chailattelove]

I had a laparoscopy and endometriosis confirmed. I remember the surgeon said it was scattered everywhere, bladder, pouch of Douglas, bowel, uterosacral ligaments etc., though he doubted I had the condition beforehand.

My endo was always described as “mild” and stage 1 (I think, it’s a long time ago) even though for all my life up to that point was excruciating and agony for me. It certainly did not feel MILD to me. I used to climb bedroom walls in pain to try and get away from myself, then generally faint a lot. I didn’t know I was having an ablation, but he did that anyway. I remember him using the word “cauterised” and the ablation afterwards was supposed to stop my heavy bleeding.

They put me on the combined pill after my operation. I think the pill just masked my symptoms (but it did help) but when I came off the pill, due to ocular migraines, my endo came back with a vengeance. Worse than ever. I just think it must be almost impossible for a surgeon to completely remove ALL endometriosis. It’s dependent on the surgeons skill, the hospital you go to, the individual nature of your endo…so many factors. No two women are the same, and neither are no two surgeons.

I believe deep excision surgery gives you a better chance, but I’m 53 now. Maybe there are newer and better techniques than the surgeries I’ve had. The below is copied from Endo UK website. I can only tell you that none of my operations ever helped me and I’m still suffering now even post menopause and on combined continuous HRT with small amount of oestrogen and larger one of progesterone. Sometimes my pelvis feels like it’s been filled with concrete and it is setting…hard. Absolutely vile feeling.

Laparoscopic surgery techniques

There are now a number of different techniques used by surgeons treating endometriosis; deep endometriosis is usually treated by excision.

What treatment can and should be carried out will be discussed with you before your surgery.

Not all techniques are available at all hospitals.

Laser ablation/excision

The word laser stands for Light Amplification by Stimulated Emission of Radiation i.e. a thin beam of concentrated light that is an intense energy beam and burns tissues. There are different types of lasers including carbon dioxide, KTP, Yag, Argon, Diode.

Electrocoagulation/Diathermy

This is the use of electrical heat as used in general surgery. It can be used to destroy and remove endometriosis, as well as control bleeding.

Harmonic Scalpels

These are devices with a vibration tip and are used for destruction or removal of endometriosis.

Excision Surgery

This involves actually cutting out areas of endometriosis using either - scissors, electrosurgery, ultrasound or lasers.

Not sure I’ve helped, but I do think you need to phone the hospital and triple check what they are planning, so at least you can make an informed decision beforehand.

[Galaswan2121]

is this on the nhs ? I had surgery last week and my last appointment I made it clear no ablation( diathermy) he agreed was coming round front he general and was told we burnt it away I was so angry 😡 nhs is absolutely hopeless with endo! So now I gotta save to go private just to get it done properly and a hysterectomy! Royal stoke / Stafford so claimed endo specialist they ain’t are not good ! They just lie to you

[Galaswan2121 in reply to Galaswan2121]

So even if you request it won’t be changed unfortunately

[Lindle]

Yes diathermy is a form of ablation - the use of heat to destroy lesions. In expert hands ablation can be used for truly mild endo, so that means endo that is limited to the peritoneum which is the lining that wraps round the abdominal/pelvic organs and lines the walls. It is very thin, likened to cling film, and doesn’t usually show on ultrasound so the fact that you have had it show suggests that this might not just be limited to the peritoneum overlying the uterosacral ligament, but to the structure of the ligament itself.

What is really important to know is that there is a nerve that runs along the ligaments called the pelvic splanchnic nerve which has its root in the spine in what becomes the sciatic nerve. US ligament endo typically gives referred back and leg pain. If diathermy is used on this, especially by a general gynaecologist with no special interest in endo, the nerve can be permanently damaged. On the group I run we have many members with ongoing nerve pain due to having US ligament endo treated by such unskilled gynaecologists and effectively burned.

US ligament endo can show on imaging as distinct ‘nodules’ or thickening. Do you have the report to post with your personal info blocked out?

[Chailattelove]

Thank you very much for everyone’s replies- very helpful. I will definitely need to talk to the hospital beforehand. What makes me at least a bit reassured is that the surgeon who would be carrying it out does have a special interest in endo imaging and surgery and previously worked at a BSGE centre.

Oddly, I haven’t received a detailed report after my appointment- I just remember that the doctor said the lesion he found was on my uterosacral ligament. I was told this would be updated in my online patient account, so will check when I can expect it.

[ClaudiaGrace]

Hey, if you can chat with the consultant doing the surgery that would be ideal, I’d get in contact with the hospital and see if you can have a phone or face to face appointment pre surgery, I’ve done this before. Say you’re not happy to consent without it as you don’t fully understand the surgery.

Also thought it might be helpful to share that my private endo consultant said that although nice guidelines say excision is gold standard, in reality you have to treat each person and their symptoms/ presentation as an individual. He said most people use a combo of ablation and excision depending on the leision, and that smaller/more superficial endo as I think you’re describing is often treated more effectively with ablation.

Have you also considered different ways to manage pain? Can’t recommend looking in to nutrition and physio enough.

Good luck with it all.

[Chailattelove in reply to ClaudiaGrace]

Thank you for this and the suggestions. I am trying to follow an anti-inflammatory diet (although I should be more consistent with it) and have looked into pelvic floor physio, which I’d really like to try. If you have done it, may I ask if your GP could refer you?

[ClaudiaGrace]

I think any changes we make diet wise will be beneficial even if not consistent, minor gains and all that. No idea if you can be referred by your GP but definitely worth a shot! It’s a women’s health physio you’re after, ideally one with a specialist interest in endo. Fingers crossed!