A handy stuff-I've-tried-for-endometriosis reference post

[kaberett]

I keep ending up in conversations with people about Things I've Tried For Endometriosis, With Bonus Stuff I've Heard Or Read About. Typing it out over and over again is getting slightly silly. Hence this posting.

• Mefenamic acid (NSAID) plus co-codamol (paracetamol+codeine). Gets me from completely immobile to able to feed myself. Doesn't touch the fatigue and lack of concentration, nor enable me to move around much outside the house under my own steam.
  
• Combined oral pill (oestrogen+progesterone). No personal experience: I can't take it because oestrogen+migraine-with-aura is a Bad Plan, Kids.
  
• Progesterone-only pill. Intended to shut down the natural cycle; I was told Cerazette was the minimum dosage that would realistically work. Turns out that progesterone is really bad for me.
  
• Mirena coil. Lowest dose of progesterone it's possible to get. Still caused me immense mental-health related trouble, and I ended up ambulanced to A&E and passing out with pain the first time I had a period with it in.
  
• Nafarelin + Livial. Nafarelin is a GnRH agonist: it shuts down the gonads (i.e. induces temporary menopause). Livial is HRT, to prevent the worst of the menopausal symptoms. I had nafarelin as a nasal spray, which was hilarious because the medium was vinegar. I lasted two weeks before deciding I wasn't having an adverse reaction in terms of mental health, before switching to...
  
• Goserelin + Livial. Goserelin is also a GnRH agonist. I had it in the form of Zoladex (a pellet injected into stomach fat). THIS WAS AMAZING. It actually worked and put me on an even keel mental health-wise, too, which AMAZING. I stopped living in constant anticipation of pain. Actually a life-changer. Unfortunately it has the side-effect of osteoporosis so is only licensed for six months; I'm now (February) five months post-Zoladex and, while I'm getting intermittent twinges bad enough to sit down and whimper (without painkillers), I'm not back at the two-days-immobilised stage yet. ETA: in April and May of 2011, I had two shots with no noticeable affect - I had pain, bleeds, the works. And then I was leaving the UK for three months, so I switched to...
  
• Triptorelin + Livial. Unlike goserelin, the 3-month triptorelin depo (Decapeptyl) doesn't wear off early in people with ovaries... at least theoretically. At time of writing I've had it in for about three weeks and it's just beginning to settle down.
  
• Danazol. Androgen (male hormones). Also causes temporary menopause, but instead of causing osteoporosis, long-term use results in liver damage (and possible masculinisation, e.g. lowering of voice and increased body hair).
  
• Laparoscopy plus ablation. Necessary for diagnosis. I was in ABSOLUTE AGONY the first period after surgery, which I suspect was because I hadn't finished healing, but even so a) I don't trust it to make much difference in pain levels and b) I now definitely get endo-type pains strongly localised to the sites of the surgical scars, which, yeah, I knew that they provided a nice happy home for new adhesions but I hadn't realised quite how pronounced that effect would be.
  
• Cox II inhibitors. These are the next thing I'm going to try. Consultant reckons they might adequately address the issue of pain while reducing the size of endometrial growths, but I hae me doubts about their likely effect on the fatigue, mental rubbish, etc.
  
• Radical hysterectomy. Whip the whole gubbins out, then go on long-term HRT with all the fun and games that entails. I might end up making this choice, but as yet can offer no helpful advice about it.

This entry was originally posted at http://kaberett.dreamwidth.org/10425.html. There are comments. Please comment there if you can.

Comments

[innocencest.livejournal.com]

I have also been on Goserelin! I'm tempted to give you a virtual high five, but I suspect it would be inappropriate.

[kaberett.livejournal.com]

I am so completely willing to do Internet high fives about drugs :-)

[innocencest.livejournal.com]

[ceb.livejournal.com]

*giggles helplessly*

[joebunny.livejournal.com]

Hi sorry to hear you have this dreaded pain in the neck illness some of us women suffer from. After many years and many types of meds and a few ops I had the full Hysterectomy and the wonderful hrt - provided you remember to take it. If you want to meet and talk about it just give us a call xx

[cuppykate.livejournal.com]

Thank you for this amazing post xxx