Persistence pays off! I had a total hysterectomy and BSO in February during which they discovered Stage 4 endo, adhesions joining my womb to my left ureter, sigmoid colon and left pelvic wall. Histology confirmed adenomyosis and an endometrioma in my left ovary. The general gynae team didn't even offer me a follow up appointment so I asked for a referral to the BSGE team. They didn't do that however I did then get a follow up appointment back with the general gynae team. Sigh...However, they did agree to refer to me the BSGE team and I had my appointment with them this morning.
The most staggering thing is the difference in attitude from the specialist team as compared to the general gynae team. They were very informative and addressed my concerns about residual endo on (and maybe inside) my colon. They are scheduling an MRI scan and then will offer me options as to further medication if necessary. It was like being in another hospital altogether.
One concern is that due to my having osteopenia and a family history of osteoporosis it is recommended that I have oestrogen HRT. This of course can reactivate endometriosis so the specialist BSGE team are going to refer me to their own HRT specialist and will see me at least on an annual basis (unless I need their help earlier than that). What a difference!
The message from all of this of course is that persistence pays! There are specialist teams in the UK who are very informative and supportive. Had I not pushed for it, I would not have had the appointment with the BSGE team. I didn't even receive a letter or histology report from the general gynae team. They were arrogant (well the men were) and clearly operate in silos.
We all have a right to have our endo taken seriously, so please ask for what you need and don't give up!
Best wishes to all of you
Julie Liza x