Adenomyosis- feel alone, any other experiences???

After being diagnosed with endometriosis a couple months ago, of which I had removed and am still recieving treatment for for prevention of its return, I am still experiencing pain and discomfort during exercise/sex and painful cramps. Had an ultrasound scan done a couple weeks ago and went to docs for results today and the diagnosis was Adenomyosis. Which is similar to endo in terms or symptoms/treatments ect. I was just wondering if anyone else has it, or has any experiences regarding it? Am confused as factsheets say it affects older women in age ranges of 30+ up to the menopause (where/when it or the symptoms disappear), who have mainly had children/ or after uterine surgery. Uterine surgery yes I have had as I had endo removed via diathermy on my ulterosaceral ligament, but I haven't had children and am only in my twenties.

I have posted a link to a fact sheet I found online;

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002481/

ronnie-baby

xx

Can't let this thread sit here all evening without a response. I don't have any experience with these sorts of problems, my women bits are the only part of my body that function reliably. So sympathy and hugs, ronnie. This must be a hard one to cope with.

 Hi Ronnie. I suffer with endometriosis so i know exactly what your going through in terms of pain and discomfort. I've put up with 2 years of constant pain because no treatments have worked so far for me but apparantly my endo is my so insignificant that gyno thinks that my pain is unrelated or im making it up! Unfortunately, I've never heard of Adenomyosis but i can suggest using endometriosis uk to possibly find a support group in your area as just a chat with other women who understand how you feel is helpful. I'm sure there are also a number of women on here you can talk to too. Sorry I couldn't be more of a help to your actual question but I hope I've helped in some way! 

ClareB

 Hi Ronnie. I can't help with the Adenomyosis as I've never heard of it, but I hope that all goes well for you. Has your Gyno suggested any further treatment?

ClareB92's idea of looking for a support group is a good one, hope you find one. You'd probably find these but here's some I found

http://www.endometriosis.org.uk/misc/links.php?menuID=8

http://www.pelvicpain.org.uk/

Take care.

Hi Ronnie, Im a nurse and I have only ever heard of this, never met anyone with it even in hospital; and I never had any experiences of it, heres some link I have found to try and help you though.

Here is a forum link of other sufferers, this may help you hun, its always good to know your not alone in this

http://www.hystersisters.com/vb2/showthread.php?t=346707

This one seems to explain it really well.

http://www.althysterectomy.org/adenomyosis.htm

Here is one with a Dr explaining it.

http://www.alternativesurgery.com/education/adenomyosis/

Understanding the basics.

http://www.endometriosistreatment.org/html/adenomyosis.html

Another mentions a few treatments.

http://www.2womenshealth.com/Adenomyosis-Diagnosis-Treatment.htm

I also found a single thread on another forum of another sufferer, maybe you could add your story too.

You can contact any of the above sites for help and advice too and Im sure they would put you intouch with more women who have it, as that really helps to hear other point of views.

I really hope you get the help and advice you need, NHS direct are amazing people, you can call them 24 hours a day for advice 0845 4647

http://www.nhsdirect.nhs.uk/

Good luck huny I hope you find the answers you need hugs*

Hello,

I hope you find a support groups. I never met this, until today I never heard of it, so unfortunately I cannot give you any answers or suggestions.

As for the why you, I think it can happen, unfortunately, outside the main group. It is just usually that it occurs in specific group, but can happen outside of it.

My gp says I should monitor it and the pain/discomfort and see if the mirena coil I had put in at the time of my last op will help as it's a form of treatment for endo and adenomyosis, and if not I have to go back and be referred back to my gynae for it to be investigated further and find a treatment that works for me. He said we aren't trying to find a diagnosis anymore, just a treatment/solution that'll now make it more easier and bearable for me to unfortrunately live with.

Thanks to you all for your kind words and support,  I shall look up the links you have posted to gain more of an insight on it.

xx

All I am able to offer is huge gert *BIG HUG* ronnie-baby - I really hope you get the help & support  you need. Sadly GPs dont have all the answers but is harsh they carnt offer,atleast, the info you want. :-(  D69x

Had a look at the website, thanks everyone. they have shed some more light onto the condition and have been very helpful and there is some very useful information on there, but it doesn't make it any easier to live with or come to terms with the fact that this is now with me for life. Can't hel p thinking if it's something i've done or all those years on the pill that's caused it all as the research mentions something about eostrogen making matters worse. Can't see a way out for me, just hope the mirena works for me and helps with the endo and adenomyosis, as right now hysterectomy really doesn't sound appealing, if though, very tempting considering all the c**p this is putting me through lately!

rb

xx