What CAN actually be done?

[Chrissie66]

I was diagnosed with endo 20 years ago. During that time, I have had numerous surgeries to remove cysts and to do general 'clean ups' in the years when we were trying for a baby, including having my left ovary removed because it was so ravaged that its only purpose was to grow new cysts which would then need attention. I have had various drug treatments, the lovely Danazol right at the beginning which caused my voice to drop and presented me with a lovely moustache, and then thankfully Prostap and Zoladex came along and I've been on various courses of that. I have now reached the stage where no more surgery is possible without a significant risk of further problems involving my bowel and bladder and associated bits and pieces (this from my Gynae and a surgeon involved in deep excision surgery). Besides, in my experience, any surgery might have a short term benefit but in the long term it makes the situation worse, as every surgery produces more scar tissue for the endo to feed on, so surgery is best avoided wherever possible unless there are fertility issues or acute situations that need prompt attention.

So basically, nothing more can be done for me. I am in varying levels of pain every single day and will be until I hit the menopause and all of this calms down, and the plan is to manage this with painkillers (pethidine being the only thing that even touches the pain) and courses of Zoladex when necessary.

Now. I know I am extremely lucky in that I have pretty much a direct line to my gynae so can just drop her an email when I think something might be wrong, and I also see her every 6 months for a scan to make sure my remaining ovary isn't producing cysts; we caught one recently and killed it off with Zoladex thus ensuring that surgery was avoided. I've also had 20 years of endo so I know my disease inside out and backwards. She also keeps me completely in the loop about everything that is going on; if there are any potential problems with anything she lets me know, and she makes sure I am involved in every decision about my treatment.

But I also know that there is no cure for endometriosis (particularly that old chestnut, hysterectomy), and that although slow progress is being made, the medical profession is almost as much in the dark as the patient about this horrible disease. I have seen appalling instances of complete consultant ignorance about endo on here but I wonder whether those consultants are any more proficient in any other area of their chosen field, i.e. they are just bad consultants generally.

So my question really is - what do people expect their gynaes to be able to do when, in the absence of a cure, there is nothing more that can be done?

I'm just curious, really.

[missteal]

My gynea has sent me to a pain management specialist. I don't know whether you've done this or if it's even been offered to you? I guess the only thing left is to try to manage the pain? Easier said than done though right? It's the tiredness that gets me!! Yawn! I also take norethisterone to stop my periods completely for 6 months at a time, this has helped my symptoms a lot xx

[cupcakegirl]

I'm in a very similar situation in terms of the end result, although my endo isn't as severe as yours. In fact, my endo is very mild but my pain is very severe and I get it every day. I've had five surgeries, only one of which made any difference and only for about 2 months. I've tried every hormonal treatment there is - the only one that helped was zoladex and so my specialist kept me on it for 2 years - eventually it stopped working and caused me problems that I still haven't sorted out three years after stopping. I currently have a mirena coil in which is torture for me.

I've now exhausted all possibilities in terms of surgery, hormonal treatments and painkillers. When I have my coil out in February, which will happen as I'm not putting up with this anymore, I'll be back on the pill and that's that. I was on over 1,000mg of morphine a day - I've managed to reduce it to around 600mg but it still incredibly high. I moved away from London two years ago and the local pain consultant wants me to get off the morphine within 6 months, which is beyond hilarious since there's nothing they can do to reduce my pain. I'm 30, have no chance of ever trying for a baby because of the pill, painkillers and lasting effects of zoladex, and since they believe my pain is caused by nerve damage and sensitivity, I'm going to be in pain for the rest of my life which is hard to take. It's hit me very hard recently especially since my last lap/coil fitting in August as it was my last "shot" I guess.

What I have had in the past is a lot of help and support from a pain specialist in chronic pelvic pain - I was under her care in London for four years and she did so much more than any doctor has ever done for me. She referred me for help with my chronic fatigue, accupuncture, homeopathy, various tests, a pain management course and so on. I don't know whether you've seen a pain specialist but you don't mention it - I've seem a few awful ones who think their job is to get you off opioids, but a great one is worth their weight in gold.

I know exactly how you're feeling - desperate, alone, doomed - and I can't really change that but I can't tell you that you're not alone. If you want to chat, please get in touch.

One last thing - please be careful with taking zoladex for extended periods of time. I thought it was a wonder drug but I wish I hadn't stayed on it for so long. I've retained lots of the side effects - hot flushes, mood swings, poor sleep etc - but the worst is that I have no

Libido whatsoever which is causing serious problems in my marriage. I'm trying to get a referral to find out what's wrong with me but it's very scary. Gynaes done believe me or don't care. Please be careful. I know you need it to avoid surgery, but personally I'd suggest you keep the individual courses as short as possible, with something like the pill in between, so you can minimise any problems.

Hugs

X

[cupcakegirl]

Oops. I meant I CAN tell you that you're not alone!

x

[Chrissie66]

lol - I know what you meant, Cupcake (that sounds very familiar, doesn't it!)

Thank you for the Zoladex advice - I made it sound as if I live my life on it, I don't. I only take it when I really cannot stand the pain anymore or when cysts appear and my hormone levels are checked fairly regularly so I am happy that I am ok with it at the moment.

And Missteal too, thank you for the advice re the pain clinic. I've never actually been to a pain clinic as such, but my gynae prescribed every single pain killer known to man until we hit on the one that worked. The problem is that because it's an opioid my GP practice hates prescribing it, and even worse, the (male) pharmacist where I pick the prescriptions up from doesn't believe that opioids work for endo and at one point refused to give me any more despite the fact that the GP had prescribed it. I KNOW that it has tolerance and potential for abuse problems but if they stopped looking at me as a junkie and instead looked through my notes they would see that I stopped taking morphine because it made me violently ill, and it might also occur to them to consider the fact that my doses of anti-depressant and Diazepam have remained at exactly the same (lowest possible) dose for the last 10 years. I don't even take anything for headaches until it's absolutely necessary, I don't drink anymore and I don't smoke. It's not my fault that I have this pain and it's not my fault that the only thing that works for it is pethidine, and it's not my fault that this is considered old fashioned these days. I put up with a lot of crap with endo and without wanting to sound like a martyr I mostly smile through it, so there's something ironic in the fact that the thing that makes me feel most alone is being treated with suspicion by the people who are there to help me. Thank God for my beyond wonderful gynae.

Just before I finish this painkiller rant - a few months ago I saw somebody on here mention Palexia, which is a relatively new painkiller which is supposed to be good for endo. I asked my GP if I could try it - bearing in mind that she hates giving me pethidine - and she wouldn't prescribe it because she'd never used it before and didn't know enough about it. How is that ok, and my sticking to the painkiller that works not ok? Sigh...

My main point though really was - well, I was wondering, in this day and age where everything is instant, and the blame and claim culture is king, whether people actually accept that there is no cure for endometriosis and that once all of the possible treatments have been explored there is nothing else to do except treat it palliatively. I know that unless a breakthrough is made, this is basically my life now and I just have to get on with it. I'm 46 now so that's 'easy' for me to accept, and I completely understand that for ladies who wanted children and ladies who live lives with no room or time for endometriosis it's a horrible, horrible situation - but I see ladies 'demanding' this and that and feel sorry for their doctors who have already done everything humanly possible, and I wonder whether these ladies realise that. Or are they just in denial about it all?

I obviously had too much time on my hands yesterday....

Do you know what I mean, though?