Suspected Adenomyosis and BSGE centre

[Billybob12]

I have suspected adenomyosis and I am being referred to gynae. Should I request being seen at a BSGE centre (which I only found out about by looking on here so thanks you) or is that only for endo?

Also does anyone with adenomyosis suffer with pain in back passage?

[JeanOsborne]

Hi, I'm not sure whether it would make to much difference with adenomyosis as the only cure for it is hysterectomy. I think the only real treatment for adenomyosis is pain relief. 

 Because adenomyosis can enlarge the uterus this can effect bowels as well as bladder, so can cause pain with both. 

I had TAH for adenomyosis and excision of endo beginning of March, where endo was on bowel , so it was difficult to say whether the pain was endo or adeno.

[Billybob12 in reply to JeanOsborne]

Thanks for your reply. How are you feeling after your hysterectomy? I had an ablation 2 years ago which helped a little but still have periods and pain but not as bad as I did before it. Would you recommend hysterectomy - I'm 43 with 4 children?

[JeanOsborne in reply to Billybob12]

I think a hysterectomy is a very personal choice. 

 For me it was the right decision but a hard one to make as I've no children. 

But the endo had severely damaged both ovaries and tubes so my chances of conceiving were extremely slim.

I'm a lot better than I was before , but having issue with bladder which I'm waiting for tests for. Also seem to have a problem with lower part of spine. Both of which are causing a lot of pain.

Do you have endo as well as adeno?

[Tboag]

Hi, have you had a laparoscopy to rule out endo, as they often go hand in hand, I have both, I would suggest a refferal to a bsge centre, as a general gyne might just deal with the uterus and not look much further, if you have both you will need thorough excision of the endo to benefit from. A hysterectomy, as Jean said it's hard to no what comes from what if you have both, good luck xx

[Billybob12]

Thanks for your replies. I had a labaroscopy about 5 years ago and they burned 3 patches of endo and discharged me. I then had the ablation done about 2 years ago after suffering lots of pain and very heavy periods with huge clots. Since the ablation I have no clots but still have pain and periods. Last 2 months I've had excruciating pain but not much blood. I have had blood tests and CA125 was raised so they sent me for ultrasound scan    

[Alaine1]

Hi

I also have both endo and adenomyosis which my first gynae missed. I'm under a BSGE centre and although they are meant to be there for endo they are also meant to have a very good knowledge of adeno as many people have options other than a hysterectomy. Unfortunately mine has always been resistant to treatment other than zoladex. As I'm at a specialist centre my gynae has kept me on this long term (4 years) which regular bone scans, repeat laps, frequent ultrasound scans which she's performed herself etc. My adeno has shown up on both ultrasound and MRI. I also She hasn't had many she's kept on it long term but because I'm under 40 and childless she's reluctant to do a hysterectomy just yet. We've tried other options repeatedly but they don't control the pain or three week long periods. She also got me finally diagnosed with IC which the GPs had failed to listen to me on and referred to a urology team. As I'm under a BSGE centre I also see their pain management specialist instead of just anyone. 

I also have the pain in the back passage which we've always put down to both endo and adenomyosis, although at the moment I'm having some additional pain from haemorrhoids but that is a different pain

I'd see how you go with the gynae you have been referred to and then if they aren't helpful ask to be re referred to a specialist centre. 

Good luck with your appt

[mylady77]

Yes, I have adeno and suffer with awful pain there. Just had a bad night of it actually.

I requested a referral to a BSGE centre but my GP refused saying I was already seeing someone well qualified. I have an upcoming date for a general gynae to do a diagnostic lap to check for endo.

Be curious to hear if you're more successful at getting a referral...

[JeanOsborne in reply to mylady77]

Hi sweetie , if you've been diagnosed with endo your GP cannot refuse to refer you to a BSGE specialist. Have a look at Lindle's posts on treatment pathways.

[mylady77 in reply to JeanOsborne]

Oh, that's interesting - thank you, I'll have a read.

[Alaine1 in reply to mylady77]

I definitely feel I'm more looked after at a BSGE centre, but that's not to say you wouldn't necessarily get great care from a general gynae. Some general gynaecologist are just as well qualified but the hospital they work at isn't an endo centre or doesn't plan on becoming one at this moment in time