I've been wanting to reach out to people about this for a very long time and I was hoping I could maybe talk to anyone that has had the same or similar experience as me.
Sorry for the essay by the way
Here's some background, back in 2014 I was diagnosed with Endometriosis. It had been a very long road to be taken seriously, as I'm sadly sure that you all relate too, but I finally had my lap and was diagnosed. During the surgery they found that I had some very significant adhesions on my bowel and digestive system as well as fairly wide spread endo.
After my surgery I spoke with my specialist about next steps and was recommended a treatment course of Decapeptyl. Despite the urge to jump at the opportunity to get rid of this condition through any means I still asked what the side effects would be. At the time I was told that they would be very minimal and that he would prescribe HRT along side it to counter anything menopause related that the injection would cause. I was told "the effects will be no worse than taking the pill".
He suggested that I do a course of 9 months despite the usual being 6 because he had had better results from a higher treatment time. 6 months in I went in for a check up. I had had the worst time of my life while taking it. The side effects were disasterous. At this appointment I asked if it was normal and whether it was safe. I was told that the side effects would dissipate after I stopped the injections and not to worry. He also added an extra three months onto the treatment as I had bled though for the first two months of the treatment. It was 12 months in total.
At the end of the treatment I had another lap and no endometriosis was found but that was 2014 and I have been house bound ever since. I never recovered and things have declined. It was a high price to pay and one in hindsight I regret more than anything.
Since then I have been diagnosed with CFS and Fibromyalgia and i'm currently being tested for POTS. My life has been so badly effected. The worst of it is that anytime I have mentioned the treatment to a medical professional since they have either looked bemused as they have never heard of it for Endo or they have told me that it is very common for patients having this treatment to develop the issues I now have after having it. Something I was never aware of.
The biggest kick to the guts though has been that the endo has come back in the last two years. Something I had hoped wouldn't happen and that my specialist told me was very unlikely.
So my question is, has anyone else taken this treatment, what was your experience and am I alone ??