Finally - referral to the BSGE Endo Team

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

2 Replies

  • Glad you got there. I'm in very similar place to you having had hyster in Feb 2015 and after a long journey got to see BSGE specialist but my experience was quite different - she wasn't really interested at all and just told me to take a combined HRT and hopefully pain will reduce. I'm not back to see them for 6 months.

  • So pleased to hear you finally got a sympathetic and pro-active team to talk to, and I hope things continue to improve. Obviously: too, I have much sympathy for your ongoing concerns, but I'm so relieved to hear a positive voice with news of some positive outcomes on here.

    I'm also delighted that faith in BSGE Centres does not seem to be misplaced. I have never been seen by one, and I'm hoping that, maybe, by now (post-mirena, post-menopause, plus my endo was never as bad as most of the cases on here) I am now post-endometriosis; however, I do keep banging away on here about how people should be seen by the BSGE Centres. This has become something of a crusade, since reading Lindle's posts on here and other positive posts such as yours about the importance of the BSGE Centres. Yet most of the women posting still don't seem to have been told about them by their GPs or other Medics. I don't understand why there is not a big banner across the top of this section ... every day, proclaiming the existence and importance of these Centres.

    Sorry, I get into rant mode easily! I just find it so, so maddening - and life-wasting!! - to read every day that women - of all ages - are still having to put up with the pain, delay, ignorance, and sheer arrogant nonsense that I was putting up with ... 10 ... 20 ... 40 years ago!

    Again, so pleased that your persistence has been rewarded, and I hope things carry on improving for you.

    Take care!

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