25 years of Endo!

[ME1973]

I was diagnosed with Endo when I was 16, I am now 41 and still having problems. Have had 5 laparoscopy ops, the last one being 10 years ago. While under the anesthetic last time they put in a Myrena Coil which completely cleared up the pain. This lasted for 6 years and was great, forgot all about having the Endo. I had the coil removed 6 years ago and the pain has started returning. I have been in constant agony for 6 whole weeks, not even one day pain free. The pain is so harsh that my legs are numb and and i spend a lot of time curled up in a ball. Saw my GP who has referred me back to Gyni and is recommending a Hysterectomy. I really hope this works once and for all. So to all you out there I share your pain and frustration. It is a debilitating disease that a lot of people think is just a bit of period pain, take an ibuprofen and you'll be ok., NO ITS NOT. so keep your opinions to yourself, I'm not doing this to get attention. It HURTS!. Best Wishes to all you fellow sufferers.

[Impatient]

ME 1973 - It took me 29 years of agony to even get diagnosed - but like yourself found the mirena to be a godsend after an extensive laparotomy.

Nor is a hysterectomy to remove the uterus any cure for this disease unless at that same op - you also have all existing endo removed from all of the locations it is growing.

If you were not aware of it - there are nearly 5o accredited endo centres in the uk where teams of specialist endo surgeons work together, these are not bog standard gynaecologists, with basic surgical skill in dealing with endo which is what most gynaecologists are.

Take a look at the list on the BSGE website for fully accredited endo centres and provisional endo centres, locate your nearest one, and take those details to your GP and specifically ask to be referred to an endo centre not just to a 'gynaecologist' who generally speaking will just be dealing with fertility issues and obstetrics as their specialiity. The provisional ones are all likely to be upgraded to full accreditation in January 2015, the list of awarding accreditation is only done once a year.

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

and

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

Constant pain might be endo - but is more commonly associated with having a leaking ovarian cyst, so an ultrasound scan should be what your GP orders for you while you await an appointment with the surgeon.

What pain killers has your GP prescribed to you while you wait to see a surgeon?

I found diclofenac very helpful - but Naproxen is another one that can provide a lot of relief from the problems of daily pains. There are even stronger pain killers which are opiate based ones which might be needed when the pains get too severe.

Having the uterus removed will stop you having a period - it will not stop any endo elsewhere from remaining active and causing pain and problems. Endo is fed by oestrogen - the ovaries, adrenal glands, tummy fat and diet as well as HRT all provide enough oestrogen production to keep endo active after a hysterectomy, which means that a hysterectomy is not the solution op for endo unless all existing endo is also hunted down and removed too.

Can I ask why you have had mirena removed and not replaced when it was doing such a good job?

Removing the uterus will mean you can no longer have mirena in the future for your endo which can itself be more of a problem and limit your options. Besides which as per the following article 10-15% of hysteremomies leave the patient in even more pain than before surgery.

dailymail.co.uk/health/arti...

Then there is the issue of ovaries too. An oopherectomy is not recommended by surgeons these days - as removing ovaries is detrimental to the rest of your body in the long term - bones and heart health etc.

Yes the loss of hormones can to some extent by remedied by taking HRT daily for many years to come - but that just feeds any remaining endo cells that were left behind, so of the two options keeping at least one working ovary is a great deal better for you than switching to HRT which you may not like taking if you haven't tried it yet. It doesn't suit everyone, at least with the ovaries they are meant to be there and are a part of your body that you are used to.

If you just want to stop periods alone and permanently then MEA or microwave endometrial ablation is a less destructive option. Basically involves cooking the lining of the womb with heat and that causes scarring to build up instead of menstrual lining which should considerable reduce bleeding or stop the periods altogether.

Other options which are not permanent - but can be used after surgery for the endo or cysts are arm implants (nexplanon) which can stop periods for up to 3 years if the coil didn't suit you in the end.

Or Depo-Provera injections every 3 months.

Both work much the same as mirena did by reducing the regrowth of menstrual lining each month to th point where there is not much there to shed each month causing bleeds.

With endo, it is the bleeding that causes the pains by landing on tissue that is reacting to being irritated by the blood and getting inflamed and sore and eventually building up scarring and adhesions that can stick your organs together.

These adhesions can cause ovaries and cysts to twist and get stuck in the wrong angle and cause daily pains instead of the pains normally associated with endo which happen when you have a period and also all the little sites of endo have their own little periods wherever they are in the body.

A skilled endo surgeon can deal with cysts, sticky adhesions, cleaning up organs that are stuck together, identifying endo lesions (they come in all shapes, colours and sizes) and can be very hard to differentiate from fatty deposits and tissue that is meant to be in a particular location as they can be very well camouflaged to all but the expert who knows what to look out for.

So if at this point you are just relying on your GP to refer you to a standard gynaecology department, can you look for the accredited endo centre most convenient to you, check they are NHS (a couple on the list are private hospitals only) and then take the details to your GP and ask to be referred to that specific endo centre. They will do other gynaecological appointments too, but primarily they are there for those women already diagnosed with endo- who need more advanced surgical techniques because their endo is returned after a previous diagnosis and surgery.

Looking at the list you will see that each endo centre has endo specialist colorectal surgeons, urologists for endoon the bladder, gynaecologists and pain specialists too. Your endo may need more than one type of specialist endo surgeon depending on where your endo is growing now.

It is very very rarely just growing on the outside of the uterus and no where else. Which means that a hysterectomy is not the solution to end your endo problems unless you also have ALL the rest of the endo wherever it might be, removed at the same time.

If you are not sure if your GP is referring you to an endo centre right away - contact the clinic and ask, and if they have not referred you to an endo clinic then provide them or your GP with the details of the one you want to use. You can pick any of the NHS endo clinics. Your might prefer to pick one closer to a relatives house if you intend to stay with someone else after surgery while you recover from the op.

It is much more important to have existing endo removed than to have a hysterectomy when you have endo. There are exceptions to that though. If you also suffer from Adenomyosis then a hysterectomy is certainly going to cure you of that, likewise if you are found to have fibroids or hydrosalpinx then surgery to remove those problems will help a lot with pain.

There are lots of forum members in 40s and 50s who have been doing battle with endo and the complications of endo for decades, and quite a few who continue to have issues long after a hysterectomy because their existing endo was not removed at the same time as the womb was taken out.

I was 43 when 1st diagnosed, but from my 1st period I had been having symptoms. just took so very long for the GPs (dozens of them) to put all the clues together and consider that perhaps this was endometriosis...and one day a new and fab lady GP (also an endo sufferer herself) looked at my medical notes and it was she that had the eureka moment and thought aha this has all the hallmarks of endo. And she was spot on, by which stage things were so far advanced inside me that major surgery was necessary and I amnot out of the woods yet - but life is bearable for the time being and mirena has been liberating as a post surgery management tool for at least stopping the wicked periods.

I wish you the very best of luck for the next op.

[ME1973 in reply to Impatient]

Wow, what a lot of really useful information. Thank you. I will read it in more detail once I've had my morning coffee. A lot to take in and to consider. In answer to your questions. I am currently only using full strength nurofen to help with the pain, which really is a waste of time and only works for a couple of hours. My doctor and I are considering other pain medication whilst waiting for referral to come through. Although, I have other conditions and illness's to consider am currently taking 12 other tablets each day for various issues and illness's which could bring on side affects..... On its complicated.

When I had the mirena coil put in it was whilst under general anasthetic. These are only supposed to be in for 5 years max, but mine wasn't taken out until after 8 years!. The doctors did try to put in a replacement but it just wasn't possible without a general anasthetic, every time they went near my cervix I was passing out with the pain. Also after this the pain continued to stay away for a couple of years and so wasn't bothered about putting another one in, until now when the pain has returned full force.

I will definitely talk to my GP in more detail. From your email I can tell i need much more information and consideration. My GP is great but he is a man!, and only we know our bodies and how we feel.

Thank you and best wishes.

[endobegone in reply to Impatient]

thanx for the info about BSGE website. if so many women are complaining that they must do, not one laporoscopy but several, one can reach a conclusion about the quality of these operations. a thorough operation is the one where the lesions are removed for good and will not grow back in the same spot.

thanx again

[Simonetta]

Dear ME1973,

I thought I would write with some information which may be of interest to you ahead of your next gynaecology appointment:

endometriosis-uk.org/sites/...

endometriosis-uk.org/sites/...

endometriosis-uk.org/sites/...

endometriosis-uk.org/sites/...

Also, the following links may help:

hysterectomy-association.or...

britishpainsociety.org/

I wish you well.

Take care,

Simonetta