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A common treatment for endometriosis could actually be making things worse

helvella profile image
helvellaAdministratorThyroid UK
6 Replies

This continues (and concludes) the Guardian articles already posted in the The pain that can't be seen special feature:

Friday’s link:

The pain that can't be seen

A common treatment for endometriosis could actually be making things worse

Repeat surgeries for endometriosis could be exacerbating pain symptoms, experts say

by Lucia Osborne-Crowley

theguardian.com/australia-n...

Thursday’s link:

healthunlocked.com/thyroidu...

Wednesday's link:

healthunlocked.com/thyroidu...

Tuesday's link:

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Monday's link:

healthunlocked.com/thyroidu...

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helvella
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6 Replies
TSH110 profile image
TSH110

Thanks for posting this

LindaC profile image
LindaC

Thank you helvella - most interesting!

Known people who've had this... dreadful, with often the severtity not being believed. Then, of course, the 'mesh' horror of late. Oh, the hysterectomies that weren't really needed [Austrailia had a pretty bad reputation for this]... and the non-cancerous thyroid removals. and. And. AND...

We're now well into the 21st C, WHY is this Misogynist Medicine still going on? Check this one out!

croakey.org/the-unattractiv...

Burn them or Drown them... so long as they're silenced.
jrbarnes profile image
jrbarnes in reply to LindaC

yes and yes, I'm one of the non cancerous thyroid removals. Wouldn't have had the growth had they recognized the symptoms of hypo and put me on meds from the start. A few years later came a painful uterine fibroid that was misdiagnosed as a ovarian cyst which led to 7 years of horrible labor like pain. Then I was given a painful surgery to look for endo because they said the fibroid couldn't be causing the pain. I finally demanded they treat the fibroid with radiofrequency ablation and pain gone. Sadly, a woman usually suffers several years before being helped.

LindaC profile image
LindaC in reply to jrbarnes

So it seems... sorry to hear that you had so much trouble over this. 🌹🦋💚 xox

HellyLlewelly profile image
HellyLlewelly

"A common treatment for Endometriosis could actually be making things worse....."

- Response;

I'm thinking of writing directly to the Guardian about this article. Prof. Andrew Horne, like many "experts" has been discussing ablation of Endometriosis via Laparoscopy, which is completely different to deep and wide excision via Laparoscopy, used by fully trained Endometriosis Surgeons.

There is less chance of disease recurrence if the Endometriosis is excised out at the roots!

A General Gynaecology Surgeon does not have the training and skill to tackle multi organ deep disease.

It will be back in no time if a flame thrower approach is put over it. Think of weeds in a garden not being completely uprooted and just their heads lopped off.

Vaporisation or diathermy known commonly as ablation is for the unskilled general Gynaecologist who is having a stab at treating patients with Endometriosis, probably as their Primary Gynaecology Consultant.

- It grows back like weeds, hence the patient (unknowingly) thinks the operation didnt work when in fact they had the wrong type of Surgical approach!

Very easy for Dr Horne to put it out there that it grows back and that operating may cause further pain when these Surgeons are causing the damage with a sub par Surgery Technique and in some cases not making use of nerve sparing techniques used by the most skilled Surgeons worldwide.

I am a victim of pelvic nerve cull during a total hysterectomy and of badly ablated bowel Endometriosis.

I struggled to hold my abdomen up for 3 years after my abdomen was so badly hacked at. The Nerve pain lasted more than 2 full years and felt like I was a whopper chew being pulled in two at my abdomen.

The Endometriosis was also left rogue inside me on most of my pelvic organs. I had it taken away by a BSGE Specialist in 2019 in Liverpool England and just had a clear (advanced) MRI this week.

Do not let such biased articles that want to push sufferers into early chemical menopause, castration, band aid type methods when the truth is there are too many unskilled Surgeons in particular Scotland and Northern Ireland and Wales, who are using ablation and then telling the patient it's back and it's pointless getting another Laparoscopy when the most effective treatment is a Laparoscopy using excision, surgical shears, bipolar diathermy and of course, the knowledge and training to identify all varieties of hidden Endometriosis and the body organs and cavities in which it may be hiding.

This is not me saying this it's the leading worlds Excision Specialists all in agreeance many of whom have an IG account or Webpage;

Marc Possover - Switzerland

Shaheen Khazali - CEMIG

Tom Holland - London

Peter Barton Smith - The Centre for Endometriosis, London

DJ Rowlands - Liverpool University Teaching Hospital and Spires Healthcare

Hassan Morsi, Halesowen

Demitri Mitroi - Bucharest Endometriosis Centre Romania Bucharest Endometriosis Centre

Andrew Cook Vital Health Endometriosis, USA

Andrea Vidali the Endometriosis Surgeon NY USA

Shanti Mohling MD, Oregon, USA

Most of the above have their own webpages or IG a/c's that explain Excision Surgery over ablation and other leading techniques which prevent mass nerve culling during Surgery.

Publishing so much unsubstantiated and misleading facts about the successful treatment of Endometriosis is very off putting for the sufferer, it actually further victimises the patient and tells them they would be better off leaving well alone!

Causing more disbelief amongst GP's, family members, Employers, colleagues...

Did I mention I really dislike that article!

Regardless of how Endometriosis presents, there is much evidence to conclude that leading experts recommend it be Excised because of the possibility of silent organ loss. 1. Fertility loss. 2. Kidney loss (hydronephrosis) 3. Loss of sensation to urinate. 4. Loss of portions of the bowel or full bowel resection resulting in Stoma (bag to defecate in.)

Never mind loss of Career, loss of Sex Life, Relationships, Exercise, Independence, Socialisation, Walking - so many of us cant walk unaided anymore.

Often the Endometrioma (on the Ovary) is the most significant to benefit the patient (alleged by these "experts" as it's the easiest form to identify, as it comes up as a large cystic mass filled with brown fluid!

It often causes severe low back pain. It can damage the ovary, tubes and thus fertility.

To suggest superficial or deep Endo be left alone is completely against NICE guidelines of treatment of Endometriosis and to preserve mortality of the patient.

At Hysterectomy my Surgeons skill level was as useless for nerve sparing - my womb and ovaries were taken out bluntly, I had a vein shear away and a mass of blood escaped the next day about the size of a chicken fillet.

I had Endometriosis of the bowel which was left inside me - go figure! If someone has Endometriosis of their left lung your dont perform a Surgery on the right lung, right! So why are so many patients being given hysterectomies, to treat sufferers with multi organ Endometriosis?

Removing a womb has no bearing on a bladder or an appendix.

Please do your research and preferably go to someone with Patients reviewing their personal Surgical accounts, that are in remission from their Endometriosis at 1 year, 18 months or 2 years post Surgery.

The wrong Surgery is indeed pointless but the right Excision Surgery for Endometriosis is potentially life saving.

I dedicate this post to the recent loss of another Endo Sister who died via complications of medications used in controlling Endometriosis pain Symptoms.

Let's put fair and unbiased information out there for Sufferers and their Careers to assess, make up their own minds on Surgical Treatments and not rely on the masses of tainted information that is circulating in the worlds press. In particular information coming from parties that may benefit from the pushing of chemical castration, chemical menopause and total hysterectomy as 1st point treatments of Endometriosis.

🌻💛🌻

helvella profile image
helvellaAdministratorThyroid UK in reply to HellyLlewelly

I think it entirely appropriate for you to express your opinion - there are many ways of contacting the Guardian and even individual journalists. I have had several replies over the years so I know many of them take such communication seriously as part of their job.

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