medication fail

[MooMinn26]

hi has anyone been put on different types of medication only to then find out nothing has slowed down or stopped the endo?

[Sunset-lady]

I think most women probably. I was given a high dose of Provera and it made everything worse. I swelled up like a balloon, my breasts hurt, I put on 16 pounds in a month and I became paranoid and mean. Worst 3 months ever. I didn't recognise myself. Thank God I never had the coil. I really feel that women need to know the difference between progestin and progesterone because doctors treat them like they're the same and they are not.

[Sunset-lady in reply to Sunset-lady]

Nothing stops endo except ourselves. For some of us the disease gets to a point when it becomes non progressive and just needs monitoring. My endo was "old endo" but everything was glued together x The biggest problem was peri menopause kicked off my estrogen and without progesterone to support me (as that declines) I felt dreadful. Endo flares in peri menopause.

[MooMinn26 in reply to Sunset-lady]

Thank you for your reply, I did say to my GP nothing is working as I was still bleeding heavily and had the large clots that I shouldn’t be having if any of those medications had worked. I definitely think more awareness and understanding for the health professionals as I feel it’s all guess work and we are left trying to manage.

[Sunset-lady]

Have you tried Zoladex or Prostrap? This was the only thing that stopped me bleeding. I was so anaemic and scared as I was losing so much blood. Zoladex eventually helped it. When it ran out I bled again. I was on it for 14 months and had it every 9 weeks. Out of the 9 weeks I got about 6 good weeks of only light bleeding. For some women it stops bleeding altogether.

[MooMinn26 in reply to Sunset-lady]

I’m currently on it for a second time but only for another four months then they’re leaving me with no medication at all as nothing is working. Got over a year to wait to see my endo consultant to discuss what’s next. I’m still tying to hold a job down as well as mange with this stupid disease. It’s ridiculous.

[Sunset-lady in reply to MooMinn26]

Who has got you on it? Normal gynae department? My GP and the gynae consultant put me on Provera and I went private to see the endo specialist. He put me on zoladex and wrote to the GP and gynae consultant. Then I waited 9 months until I saw him. My consultant had women on prostrap for 15 years as with a BSGE endo clinic you can prescribe it off license. Could you go private to get on the right track?

[MooMinn26 in reply to Sunset-lady]

Gynae put me back on it after my last consultation, not sure if it’s working or not.

Can’t afford private unfortunately

[Sunset-lady]

Is zoladex working?

[EverlongFoos]

My endo got worse with the mirena (all other contraceptives had failed in some way eg excessive bleeding/pain/moods). I had it taken out and put on prostap at which point I was stage 3. The prostap shrunk what was seen on the mri but I had new growth on the pouch of Douglas when I finally had my surgery! Unfortunately some treatments will work for some and not for others.

[Katmcm790]

My endo didn’t improve on any contraceptive pills or injections. The mirena was great for the first 3 years and I barely bled and pain was better but when I had my second Mirena it’s never been as good. I’ve had 4 surgeries, the last one was a big surgery and only gave me a few months of relief. I’m now on Zoladex monthly and that works really well though I have a pain flare nearing the end when the next one is due. I also take amitriptyline for nerve damage which has helped my sciatic and lower back pain as I have DIE on my ligaments.