"Is a hysterectomy with removal of the ovaries really a good treatment for endometriosis? NO,it is not." Pls read to help educate yourselves

[Arcadia-77]

I'm just sharing this article with you all, as it never fails to amaze me how many ladies believe this common myth, and think that a hysterectomy is a treatment for endo, it really is NOT!

"Is a hysterectomy with removal of the ovaries really a good treatment for endometriosis?

NO, it is not. Hysterectomy does not treat endometriosis but will resolve any problems caused by the uterus itself. Endometriosis involves areas outside the uterus. If a patient with endometriosis also happens to have problems with her uterus (causing uterine pain) then she may find some pain relief from hysterectomy but this is not because the operation removes or resolves her endometriosis.

Removal of the ovaries can reduce the symptoms associated with endometriosis because the ovaries are the body's main source of estrogen... take away the main source of estrogen and endometriosis may well become less symptomatic or asymptomatic, although it won't make it go away (in 85% of patients removal of the ovaries resolves their endometriosis-related pain)... so you might say "wow that's a great treatment for endometriosis!"... but... removal of the ovaries is generally combined with removal of the uterus (so it's unclear how much of the pain relief is due to the low-estrogen effects on endometriosis and not on concurrent uterine pain), surgical menopause often brings about SEVERE symptoms and can result in long-term health problems (some of which could ultimately significantly shorten your lifespan) and of course robs a woman of her fertility. The toll is therefore high, especially in young patients who still want to have children. Often the option is presented to patients when the doctor is unable to remove their endometriosis [edited to comply with our code of conduct]

Then there are the 15% of women who don't have relief despite hysterectomy and removal of the ovaries... the ovaries are not the only source of estrogen - endometriosis itself can synthesize estrogen and so can body fat... so even without ovaries, endometriosis may continue to be symptomatic. With this in mind, removal of a healthy woman's ovaries and uterus makes little sense in treating endometriosis.... removing the disease not the reproductive organs makes far more sense, brings fewer long-term health concerns and can bring the same, if not better, relief to the patient.

The only instances when the uterus should be removed is when the patient has uterine pain that does not respond to conservative treatments and/or there is something wrong with the uterus that requires its removal (such as severe bleeding or malignancy).

The ovaries should be preserved if at all possible - sometimes if a woman has recurrent or very large endometriomas too much ovarian tissue will be lost to save the ovaries or she may decide that removal is better than having to undergo repeated surgeries. In most cases endometriomas can be removed without removing the ovary and repeated recurrence of ovarian endometriomas following excision only affects an unlucky minority of patients.

If your doctor tells you hysterectomy with removal of the ovaries is your ONLY option... stop and seek a second opinion from an endometriosis specialist. Please never go into this surgery without first being fully informed of your options - while hysterectomy and bilateral oophorectomy (removal of both ovaries) has its place in gynecological surgery it's a treatment option that should not be taken lightly and should only be offered to select patients. "

[edited to comply with our code of conduct]

At this moment in time excision surgery with an endometriosis specialist is the gold standard treatment for endo. This is available to us at the BSGE Endo centres across the UK, if you live in England it's very simple to get referred to a specialist, the rules are different in the other regions but it is still possible. Please note the level of skill does vary with the consultants at the centres, so it's wise to do your research before you decide on which one to be referred to.

bsge.org.uk/ec-BSGE-accredi...

[Hidden]

And what is really sad, is doctors tell us this is true, well that and being pregnant will stop endo. I've heard both from several doctors. That and menopause will make it all go away.

[Arcadia-77 in reply to Hidden]

I know! it's ridiculous the amount of myths about endo, many that are tragically perpetuated by doctors!

[JellyKat]

Thanks for the post.

I was surprised (concerned?) that they gynae I see is not on the BSGE list, but the hospital is? Glad to have seen it.

[Arcadia-77 in reply to JellyKat]

Glad it was helpful! It makes no difference if the hospital is an endo centre really, it's only the consultants on the list that are the endo specialists - unless you have currently only seen one of their registrars? If you are planning on surgery (and in most other ways really...) it would be better to be under the care of a specialist. As I mentioned sadly the level of knowledge & skill seems to vary greatly between the "specialists" at the centres. It's a good idea to research and get feedback on them before you choose, if you will be going for surgery. [edited to comply with our code of conduct]

[Jod84]

Thank you for sharing this post. Brilliant timing as I am back to see my Gynae today after my hysterectomy. Yes I still have endromesostis in my pelvis and pains so it hasn't cured it, but I knew that. I am lucky that I have had my 2 children now and I am 45... who knows how I will be going forward. Trying the endo diet now and primrose oil!!

[Arcadia-77 in reply to Jod84]

Hi, glad it was good timing for you, sorry to hear that you are still suffering, and the hysterectomy didn't help. If you are still really struggling with the symptoms, you should ask to be referred to a specialist at one of the BSGE centres, look into them first as I mentioned in my reply above.

[Sweetyassi]

Hi, thank you so much for posting this.

So many doctors says a lot of things that will help get rid of Endo but in truth nothing does. Some women are very lucky after having one operation to remove Endo they are pain free. But for how long?

I had my hystercretomy in 2011 but kept my ovaries and I still had Endo. I had yet another operation last year November to remove more Endo and adhesions. It's been a year now and I'm still having a few problems but nothing like before my operation. I'm wondering after reading this post will the Endo return.

Sweety

[Arcadia-77 in reply to Sweetyassi]

Hi, pleased it was useful for you, and good to hear that things are better after your surgery.

Excision surgery is currently the only treatment that if done properly, ie all endo is recognised and thoroughly excised can truly get rid of the disease, and has the potential to provide permanent or long term relief. Most of what people think of as endo "coming back" is either because it was never properly removed in the first place, or it was missed, true recurrence after thorough excision is the exception.

[edited to comply with our code of conduct]

[Sweetyassi in reply to Arcadia-77]

Thank you for sending those links.

[erikthe2nd]

That could not have been timed better , so thank you

my genea has been telling me for two years that I need more surgery.

Had keyhole surgery two years ago and had a lot of endo removed and ovarian cysts also removed.

I have been on 3 monthly zoladex Injections ever since, and while this has helped i still get a lot of pain and discomfort .

After the first surgery I was told that my bowel and bladder were also attached but this could not be done with keyhole surgery. I was also told that the 2nd surgery would also involve a bowel surgeon and a colostomy.

I recently saw gynea and finally agreed to the surgery including full hysterectomy because I could not see another choice.i am losing weight because I am only eating light meals so my bowel does not hurt so much.taking far too much tramadol and ibuprofen and general feel rubbish most days.

They discussed that they don't know the potential side effects of zoladex when used for more then 6 months and suggested stopping it. I refused because they tried stopping it sfyer 6 months and i was in agony within a couple of weeks.and even now I know 2 weeks before I am due the next injection the pain increases and I end up of work. So stopping it will allow the endo to spread.

So he sent me to see the bowel surgeon to discuss the colostomy and if this will permanant and also arranged mri scan aswell. The mri showed nothing and the bowel surgeon has contradicted everything the gynea consultant has said.

While the gynea are adamant it will be a duel surgery with the bowel team because of what was found . The bowel team have said they do not need to be there because my bowel is not attached and I won't need a colostomy. But he also said if during the surgery they find it do need them , one of the team is always on call.

Left feeling totally confused as to who is actually telling the truth and what I do next !

Can't make an informed choice as they are telling me different things.

But having read the above I at least know that the brakes are now back on and no one is going near me while I work out other choices.

Time for 2nd opinion me thinks !

[Arcadia-77 in reply to erikthe2nd]

Hi, sorry to hear that things are so tough, but really pleased that seeing this was good timing for you, and it sounds like putting the brakes on and getting a second opinon is a very wise idea! Making informed choices is so important, as unfortunately there are a lot of consultants that their knowledge on endo is not up to date, and most general gynaecologists don't have the surgical skills needed to perform excision, and in reality very few surgeons have the skills needed to corectly tackle really severe disease.

Are you in the UK, if so which region? and are you currently under the care of an endometriosis specialist at one of the BSGE centres? I can probably help more then, and give you better suggestions of what to do!

Research points to endo not "spreading" as in wildly all over the place, but the lesions can deepen and invade locally over time, and more adhesions can form. Zoladex (or any of the other GnRH drugs, or hormone treatments) will do nothing for the disease itself, at best if you can tolerate them they can only help with the symptoms. As you say there is no research on the long term side effects of GnRH drugs, so it's good that your consultant is concerned about that. Are you taking add-back HRT, and getting scans to check on your bones?

I'm curious do they also suspect you have adenomyosis? As suggesting a hysterectomy for that would be correct.

[erikthe2nd in reply to Arcadia-77]

Hi I am in Kent UK, not under bsge centre but after last week it is on list of considerations.

I am on tibilone as add back, no they have never done a bone scan.

No one has ever mentioned adenomyosis so assume not.

At moment debating three choices.

1- allow consultant to do more keyhole surgery to see what is happening 2 years on.(this was offered at same time as full hysterectomy etc as alternative)

2- demand referral to bsge centre.

3- pay for a private consultation to get second opinion.

[Arcadia-77 in reply to erikthe2nd]

Hi, personally I think that either option 2 or 3 would be your best bet. It would be far better to have any surgery with an endo specialist surgeon, who would be able to perform excision and preserve your organs, depending on the severity of the endo on your bowel, it's likely the risks of needing a colostomy would be much much lower too. If you can afford a private consultation (usually up to approx £250) you could do that, then just ask to be referred back on to the NHS list at their BSGE centre for the rest of your treatment. I would definitely ask for a bone scan (just to be safe) some of the ladies who are on GnRH for longer than 6 months, do get regular ones.

[lolakitty]

I had a hysterectomy 2 years ago and did get some relief, but have been suffering more and more pelvic, cul de sac and rectal pain, to the point where it keeps me out of work. I feel like I'm out of options and just stuck with it.

[Arcadia-77 in reply to lolakitty]

Hi, please don't feel like you are stuck with it, and have to suffer. If you are in the UK, have a read of my replies above re BSGE endo centres and specialists, and ask to be referred to one, they should be able to help you.