I am 37, just been diagnosed with endo after going to the Dr with some bleeding inbetween periods (because the 20 years of going with painful periods and being offered the pill and ibruprofen wasn't enough for any kind of tests ARGHGHGHGHG). After the GP messed about focusing on STD tests for a couple of months I get a scan and they find a 7cm mass covering my ovary and tube and then I promptly ditch the NHS and go private. During the lap he could not distangle the mass so my ovary and tube had to be removed, he had a look over the other side and said the other ovary is stuck and has scarring on the tube and he thinks IVF is the only way to conceive. The endo was all over the ureter and colon aswell.
On the follow up appointment he said that a full hysterectomy is the only way to go for full relief of symptoms, with HRT to keep the hormones going.
So we are now going through the tests to be referred to the fertlity clinic, good news is my right ovary (bless it) is still firing eggs out.
But my question is does a full hysterectomy work for endo?
To be honest I have dealt with endo symptoms all my life so I was going to wait a while and see what happened but no-one has discussed what long term care is needed with this option. Apart from the tiredness and painful periods I did not notice anything extra with this mass. A couple of years ago with the first day of my period I would have simultaneous vomiting and diarrhoea whilst having hot cold sweats and had no strength to even hold a cup of water. Those episodes would last about an hour on the loo with my husband holding me on there, then off to bed sweating uncontrollably shivering and I would get up two hours later and everything was fine. Again the GP offered me the pill (ARGHGHGHGHGHGHGHG). Maybe this was the start of the endo?
I've seen people getting multiple laps but what triggers going off to the GP to think about having another one?
I am completely shocked and disgusted that the only form of treatment is "sterilisation". How many ovaries and uterus' have been taken out due to this disease???? Are we living in the dark ages? ARGHGHGHGHGHGH. Drs are happy to do multiple surgeries but then its ignored as a debilitating disease ARGHGHGHGH.
The ARGHGHGHGH is the extreme anger I have over this, which I am sure others feel!
The consultant almost seemed shocked when I tell him hes not getting my other lady bits, then I suggested chopping off his testicles and asked how he felt. MAybe this is the anger kicking in again....
I am 4 months post lap, last period although heavy on the first day only lasted 36 hours. I am lucky to work from home so can get away with staying in bed for the first day which is always the worst for me.
So anyway back to the point, whats peoples experiences of hystrectomys and HRT? Does it work? Or like the rest of the unknown with endo, does it vary?