Fed up

20 years of pain, 3 laparoscopic surgeries, 10 years on & off of zoladex, numerous Mirena coils. This is what failed endometriosis treatment looks like. A bit of advice to all the ladies who are just starting out on their journey is to try to get a referral to a specialist endo doctor, not just general gynaecologist. The only way to remove it properly is by deep excision. The treatment offered to me has only delayed it allowing the disease to progress.

[Moon_maiden]

Have you had excision now? I hope you are on the mend, but with title I’m kinda assuming still having issues.

[Hidden in reply to Moon_maiden]

No I haven’t I’m looking into seeing a consultant but at £200 initial consultation over the phone it could be out of my price range!! I came off all the drugs and hormones a year ago, just to give my body a break but my monthly cycle hasn’t returned yet and bloods are normal. I’m not in the menapause. Still in daily pain of which isn’t dampened by pain killers must be sort of immune to them by now!!

[Moon_maiden in reply to Hidden]

Hi

Sorry it’s still painful. We shouldn’t have to go private to get anywhere. I must admit it was the best £200 I’d spent. I did end up selling some things to pay for op. Unfortunately there are other things so still in pain as well.

Will you try for a new referral through NHS to a specialist centre? The GP shouldn’t have any objections given what you’ve been through.

[Sez73]

Sadly even getting a referral to a specialist can often only do some much. Like you, I’ve suffered endo related pain for 20years & had 4 laps. After 15yrs of misdiagnosis, I sought specialist excision surgeons right from the off & never did any hormone treatment but instead chose aggressive excision. Endo came back within 6 months off my first lap (as the endo was too extensive to completely remove & was too dangerous as attached to a main artery & ureter) it came back a year after my second lap then I elected for a 9hr v aggressive, expensive full total peritoneal excision which only very few surgeons do (mine has since retired) & that gave me 2yrs bliss of symptom free time and guess what...it came back with a vengeance & has steadily got worse and I’ve been advised no more surgery due to so much scar tissue and nerve damage which causes other issues and pain & I also have adenomyosis. I have still tried to have a family so did not want a hysterectomy but now at 45 time has run out. A hysterectomy is also not always the answer especially when endo is so aggressive, plenty of ladies still have endo related pain post hysterectomy which has always been a concern to me to go that route. I don’t believe it ever ends which terrifies me.

Yes, I’d agree with u in respect that the treatment you had was just delaying tactics & gave opportunity for the endo to worsen, & I feel for you terribly as it was certainly not the best way forward, but in some cases even throwing the full force of private extensive excision surgery by one of the best surgeons in the world also didn’t help and I think that point needs to be made too. Private surgery cost an eye wateringly amount of money & I feel almost back to square one after years of treatment which is beyond demoralising as u can imagine. I appreciate I only started having surgery when endo had already taken over, was at stage IV & a v aggressive form. I strongly believe early excision when endo had just started would have significantly changed my outcome.

But I would agree for newly diagnosed cases where the endo may not have got so aggressive and out of control, girls should get in early with excision treatment & if you want a family make it a priority and above all do not rely on hopeless uneducated GPs and demand to see only endo specialists, a general gynae surgery is your worst enemy! Endo feeds off itself and just takes over and in cases like mine, despite throwing a very aggressive approach at it, it has still returned & wrecked me. I don’t know if it helps you reconcile things slightly when you maybe saw a failure in your endo treatment and must question a lot what could have been but maybe what I’ve said may help in knowing even if you had done things differently it doesn’t mean you would have got the perfect outcome. Excision surgery can get rid of the endo but it also can come back, at least it did for me. I’m sorry you’re fed up, I get it completely and it sickens me people like us suffer hugely and the complexity, extent and impact of endometriosis on sufferers just isn’t out there in the public domain, it is a travesty. I wish you all the best and sorry you didn’t get a decent outcome and we’re mismanaged in your treatment. While I’m v sad surgery didn’t work for me I guess I got some form of knowing I through everything at my endo in terms of gold standard treatment, yet as I learnt, that still wasn’t enough and that could have been the case for you too. All we can do is speak from experience I guess which may hopefully help others, but it’s not much consolation sometimes when it’s impacted our life so much hey! Good luck and keep fighting x

[justmai]

My story was similar to yours minus the coil and 10 plus surgery’s i was on zolodex for 5 plus years There was no endo specialists when i was diagnosed i ended up having a hysterectomy, age 30 22 years ago im sure there must now be treatments out there then to have a total hysterectomy.

If you opt for a hysterectomy you need to gave ovaries removed snd no hrt as that can bring it back to where you have endo on other organs.