should i get a second opinion for adenomyosis diagnosis?

[hannah11]

Hi!

Last year I had a diagnostic op, during which it was discovered I had loads of endo as well a signs of adenomyosis. I'm told all the endo was all successfully removed, but my quality of life has not really improved due to what I am presuming to be the on going adeno symptoms. I'm still in so much pain and really exhausted all the time. I received no support beyond being told I probably have adenomyosis, and I was basically left to just get on with it. I feel really helpless and I don't know what to do from here.

It's occurred to me over the last few days that I should get a second opinion to confirm further this diagnosis (though i know official conformation can't happen until post hysterectomy) but I'm not sure who to ask or where to go. I've been reading about how certain scans can give further insight into weather or not someone has adenomyosis, which i think i would like to explore further.

Does anyone know of any gynaecologists who specialise in adenomyosis? I live in north london but i am happy to travel.

Has anyone been in a similar situation? what were your experiences?

I really look forward to your replies.

Best,

Hannah

[Tboag]

How old are you??

Was you operated on in bsge centre???

[hannah11 in reply to Tboag]

I'm 21 and yes it was. They took care of the endo side of things really well but not the adeno

[Tboag in reply to hannah11]

I had Adenomyosis, but I'm 40 with 3 sons so I had a hysterectomy, I've got endo too, and am awaiting to have a laparoscopy under a bsge centre, as my endo wasn't dealt with by a bsge centre,

Have they suggested any hormone treatment,

Xx

[hannah11 in reply to Tboag]

that's mad that they didn't remove ur endo when they were doing the hysterectomy, they should've done it then and there to save you another op!

They've recommended hormones yes but I am choosing to manage with diet atm as I am drug sensitive and have had some bad experiences with drugs in the past.

My surgeon didn't tell me she noticed signs of adeno why she operated, instead she told me i was going to recover fully after the lap cos she'd removed all the endo. then, when i didn't, she fessed up that she did notice my uterus looked weird and said i probs have adeno and was basically like 'k good like with that byeee' which really broke my trust. i want to get further help and advice on managing it from a professional but i don't want to go back to her as I don't feel like i can trust her after that experience. I don't know where to go though!

thanks for sharing your situation with me. I appreciate it.

Best,

Hannah x

[Alicepirate]

I had the same thing ish endo removed told I have adenomyosis although I am 41 so much nearer menopause. I have been put on pill back to back for6 months before hysterectomy as my symptoms bowel and bladder pains do not change severely with cycle so hysterectomy may not resolve everything . So by taking the pill can see if it the adenomyosis causing the problem or if it something else. When I had my lap photos were taken so consultant has shown me my 'swollen sore womb ' pictures and also biopsies were taken also to make sure it's adenomyosis did they do that when you had your lap? May GP offended me chemical hormonal help after my lap I chose the pill as have never used it before but it may be an option to pin point problem unless you have already tried back to back pill as a lot of people have.

[hannah11 in reply to Alicepirate]

Gosh it sounds like you are going through the wars!! I really hope that a hysterectomy brings you relief not just from your pain but from your bowel and bladder symptoms as well.

My surgeon also showed me photos of my womb, but very briefly. she was resistant to give me copies to take home and when she did they were very blurry photo copies. She did a biopsy too but it all came back fine. she told me that i'd never officially know if i have it until they examine the whole uterus post hysterectomy :/

I'm not really able to go on the pill as I am drug sensitive so I can't test it out to see if it works unfortunately.

I wish you luck with everything, I hope it all goes well!

Best,

Hannah x

[treez]

Hi

My adenomyosis showed up on a pelvic ultrasound my gyni said if you get a good radiologist they often spot it I am now on zoladex to see if it works then they want me to have a hysterectomy,I wouldn't think it would be an option at your age but I would think some sort of hormone would of been offered,if you weren't seen at a specialist centre I would recommend a referral as it seems to be the way forward.

All the best treez

[hannah11 in reply to treez]

Thanks for replying Treez. I'm so glad they were able to detect it via ultrasound for you, but I'm sad to hear you may have to have a hysterectomy in the future too. Hopefully the zoladex will buy you some time.

I was actually by a specialist originally. However, I will not be going back to her after the experience I had. Basically, she told me I would be fine after my lap because she removed all the endo, knowing full well that the odds of that were slim considering she'd seen signs of adeno whilst operating. I feel very let down by her because she did not tell me about it straight away, instead she let me go off thinking i was finally done with all these symptoms. It wasn't until months later when I made an emergency appointment that she confessed she'd known i probably wouldn't get better all along, she just didn't warn me about the possibility. This was roughly 6 months ago.

She came highly recommended and supposedly specialises in adeno as well as endo but i don't feel comfortable going back to her. I don't know where else to go though.

Who do you see? Are they any good?

Best,

Hannah

[treez in reply to hannah11]

Hi

I haven't been to a specialist yet as I was told it is unlikely to be endo and my only option was a hysterectomy I have since been told that's not the case so going to ask for a referral and I don't care how far I need to travel to get the right treatment(I'm in Cumbria so miles from most specialist centres).I think that's terrible that you weren't given all the facts,look at lindles posts on this site she might be able to help as she really knows her stuff.

All the best treez