Offered coil

[endopolycystic]

Hello, 1st post. Im 47 yrs old at 25 yrs afters years of pain and being told it was my mental health, stage 4 endometriosis was found during a laparoscopy and burned of where they could but a course of injections were needed as it was also on my urethra/ ureta( cant remember which) . But for the last few years pain and period problem's, bowel and bladder problem's etc etc have been getting worse, finally got to see a gynaecologist and no scan or anything offered just a painful internal scraping exam and then offered the coil... is this correct treatment? I don't know what to do now. Advice appreciated.

[Lindle]

Which country in the UK are you and how long ago was the lap?

[endopolycystic]

Thankyou for replying, im in greater manchester area and my laparoscopy was 22 years ago now. I didnt know it could come back, so ive just been ignoring pain for the past 5 or so years. Its just its getting worse.

[LoloSunset in reply to endopolycystic]

Im going similar issues to yours. Im so sorry. ((Hugs))

[endopolycystic in reply to LoloSunset]

Big hugs in return.

[Lindle in reply to endopolycystic]

That would explain why the treatment you had would be considered so inappropriate now but will have been relative to the knowledge then. Ablation (burning) isn't appropriate for stage 4 as it doesn't go deep enough and the injections don't stop it growing. Having said that though you did really well to go what must have been over 15 years without further problems

Typical symptoms of stage 4 endo might be lower back pain often referred to the leg, which mostly but not always affects the left side more, pain with sex, stabbing/shooting pains up the bottom/vagina, difficulty sitting/walking for long, bowel and bladder problems. Although symptoms might be exaggerated at period time they will usually be present all the time.

This is rectovaginal endo and it will have been the ureter involved. Given that this will probably have been inadequately treated all those years ago, ureteral endo can gradually compress the ureter and cause kidney damage.

Sadly endo knowledge seems just as lacking now by some gynaecologists. The coil really just controls pain from the uterus and is not a treatment for severe endo. It is alarming that they aren't aware of the treatment pathway. You need referral to a specialist endo centre; I have put the link to the NHS England treatment specification below. Presumably it will be confirmed in your records that you had stage 4 and your GP needs to refer you under 3.2.2:

'Referral

Patients with known severe disease, which has not been adequately treated or has recurred, are likely to be referred by primary care clinicians. Gynaecologists in secondary care, who identify severe deeply infiltrating endometriosis or recto-vaginal disease at laparoscopy, or open surgery, will refer patients from secondary care to an Endometriosis centre. Laparoscopic images and or video, of suitable quality and format will be included with the referral wherever they are available as this may prevent the need for repeat laparoscopic pelvic survey after referral.'

You will need a detailed scan (ultrasound/MRI) to map your pelvis to see what is involved and whether any of your organs are at risk from infiltration. Endo doesn't go away after menopause as it produces its own oestrogen by a process that is not dependant on the ovaries but deep disease can reach a stage of non-progression. It can't be escaped that surgery for deep endo is complex and high risk so carefully considered decisions have to be made based on balancing these risks against your quality of life now and potential benefits of surgery. This can only be done in a specialist endo centre.

The list of endo centres is also linked. Please feel free to message if you need more help.

NHS England treatment spec:

england.nhs.uk/wp-content/u...

List of centres:

bsge.org.uk/centre/

[Ugnele in reply to Lindle]

Hi, can I just ask a little be more about pain you mentioned in the leg? I have stage 4 endo and very bizarre feeling in left leg, more skin sensitivity than pain but still quite uncomfortable. What is it called? The leg pain with stage 4 endo?

[Lindle in reply to Ugnele]

It is referred pain or other sensation. There is a nerve that runs along the uterosacral ligament (one of the most common places for endo and usually involved in rectovaginal endo) called the pelvic splanchnic nerve which arises in the spine from the same roots as the sciatic nerve. So pain arising from irritation or damage to the nerve on the ligament can refer down the sciatic nerve.

[endopolycystic in reply to Lindle]

Thankyou, so very very much, very helpful. I dont think ive been trouble free for all those years to be honest, ibs was the reason for bowel, osteoarthritis for hips and back, pcos, menopause, my weight. No tests just told what my pains/issues were due to.

[singingelephant]

I was offered the coil and told it’ll mostly help with the pain but from my understanding it just masks what’s going on and I’ve been on the non hormonal coil before and it just didn’t go well so I declined the mirena. Plus, it seems that if I have any extra hormones, I get migraines. The coil does work for some people though. Whether that just be helping elevate some pain or slow down the growing back ☺️

[EndoViking]

I was give the coil, helped with bleeding but not the pain. But it gave me horrible side effects. Had progesterone intolerance. It might work for some but I felt so unwell while using it. Ive now had a hysterectomy and feel miles better already at 9 weeks post op