Adenomyosis

I have suspected adenomyosis (I've had endometriosis for 20+)

Have any of you experienced adenomyosis ? Any advice on pain relief and treatment options?

Thank you

[PPSN_JudyB Pelvic Pain Support Netwo]

Yes, and there are quite a few people here who have experience of this. Have you read anything about it as there are two types: diffuse and focal. I guess you've tried GnRH agonists as you have a long history of endometriosis ?

[Hidden in reply to PPSN_JudyB]

Thank you for your reply.

I haven't read much about it. Can you recommend any books/websites?

My MRI results showed severe endometriosis (not a surprise) and diffuse adeno. Can you tell me what exactly that means please?

The specialist has suggested the mirena before and if that doesn't help we will use more agresive treatments.

Many thanks

Barbara

[PPSN_JudyB Pelvic Pain Support Netwo in reply to Hidden]

Diffuse adenomyosis means that it is widespread throughout the uterus ( not in one place. This means that surgery to remove the adenomyosis is not realistic as it's too difficult. Have you had any treatment for the endometriosis over the years ? if so what have you tried ?

[Hidden in reply to PPSN_JudyB]

Thank you for your response. I appreciate your help.

I have had about six laparoscopies and one laparotomy. I've been on Danazol. Progesterone and I've tried the mirena before.

The specialist doesn't want to start me on GNRH without trying other less severe treatments. I also suffer with migraines which are triggered by hormones (amongst other things).

I asked about a hysterectomy but the doctors are concerned as my uterus is stuck to my colon.

I feel very down at the moment. The daily pelvic and back pain along with the fatigue, is making things difficult.

Barbara

[PPSN_JudyB Pelvic Pain Support Netwo in reply to Hidden]

I can't think of anything else as you've tried the usual things. The only thing left is GnRH ( Zoladex ) is one of this group, but there are other others and some are available as a daily nasal spray rather than injection which is for a minimum of one month.

[Chocolate-lover]

Hi cuddlybarb

I'm so sorry to read that you've been troubled for 20 years with endo, and now they think you may have adenomyosis too.

The 2 conditions quite often go cap in hand, but with different symptoms, but adenomyosis is usually missed because the symptoms from the endo are more significant.

Have they offered you any tests to confirm this new diagnosis? I've just had an MRI as apparently this scan picks the condition up very well, and they suspect I too may have it.

They have also put me on a 3 month trial of a hormone implant called Zoladex, which basically shuts all my body clock down, as Adenomyosis works in a similar way to endo, feeding off your monthly cycle.

Everyone is different tho, and I have other health problems too which this course of treatment/diagnosis is being used to help combat. If I were you I'd definitely be asking for an MRI, and then take it from there.

I wish you every luck, and please let us know how you get on.

Angela x

[Hidden in reply to Chocolate-lover]

Hello Angela.

Yes I asked for an MRI and I get my results tomorrow. I had a trans vaginal scan and I have either adeno or a degenerating fibroid.

I get terrible cramps about 11 days before my period and then I get all the Endo pains with my period. I am suffering terribly with back pain also.

How are you getting on with Zoledez? Have you experienced any side effects?

Best wishes,

Barbara x