Adenomyomatosis

[treez]

Hi

I have recently had a pelvic scan and there was an area which suggested adenomyomatosis I have severe left sided pelvic pain I have been referred to gynecology, but i wondered if anybody could give me any advice in the meantime.

Thanks treez

[valerie8502]

I had a hysterectomy and when the uterus was sent to path lab after operation it showed adenomyatosis, which I had never heard of before. I had been bleeding 22 days a month then a stop of 6 days then back on the 22 days. Of course I was worn out, had to wait months to see Gynecologist (back in the 1990s) then three months for the op. I could hardly push my double buggy by then or look after the children. After the operation it took about three months full recovery, but I have never looked back.

Wish you well, keep in touch.

[treez in reply to valerie8502]

Hi Valerie

Thanks for your reply,my doctor hadn't heard of if either.my bleeding isn't that bad luckily but I am still very tired and seem to be getting every bug going.i am seeing the gynaecologist next month so hopefully should have some answers then and probably a long wait too.it must of been very hard going through that and having small children but it's good too know that it can be sorted.

Thanks Treez

[valerie8502 in reply to treez]

When it was explained to me it seems that similar to endometriosis, but not the same, the muscles around the womb develop an extra lining that then bleeds like a menstrual cycle and this explained my excessive bleeding. Really wish you well. Take care, Val

[treez in reply to valerie8502]

Thanks

I will let you know how I get on

Treez

[LouisaG]

I have adenomyosis. Was diagnosed several years ago. I take the birth control pill continuously to stop my period. This prevents my symptoms. If I have a period I become very sick and the pain was unbearable. It is very hard to diagnose as it has similar symptoms to endometriosis. Until you see your Gyn I would recommend prescription strength ibuprofen to alleviate pain. Your Gyn will discuss options with you which will include hysterectomy but don't freak out and feel that is the only answer. Ask him about continuous birth control to start. There is also an injection that creates temporary menopause. I tried this but had bad side effects from it. Since I have taken continuous birth control my symptoms are well managed. Good luck.

[treez in reply to LouisaG]

Hi louisa

Thanks for your reply, it's good to know that hysterectomy is not my only option it does freak me out a bit,but I will see what the gynaecologist says next month.

Thanks Treez

[ab24601]

Adeno can only be confiirmed through tissue samples after a hyst. Have you been ruled out for endometriosis? The symptoms are similar so I can sympathize. I was "misdiagnosed" with IBS for years before being diagnosed with endo. After excision surgery my symptoms disappeared (still unsure if I have ibs or if its the endo)

[treez in reply to ab24601]

No endometriosis has not been ruled out as only had a scan which showed poss adenomyomatosis which has similar symptoms to endo,I have another appointment next month so I am hoping to find out more then.i was also diagnosed with ibs but I know the symptoms are very similar so I am hoping it is one or the other, not both which us possible if you are really unlucky.

[ab24601]

Endo won't show on a scan can only be diagnosed or ruled out through lap surgery. Again you will only know for sure if its adeno if it is found in the tissues post hyst

[treez in reply to ab24601]

Thanks

It looks like I will have to have a laparoscopy, but to be honest it will be worth it to find the source of the pain and find the best way to deal with it.

Treez

[ab24601]

Yes! Many people are misdiagnosed for approx 15 years before discovering endo so knocking that on the head while you can is the best idea, even if it's just to rule it out. It's a fast recovery and going under anesthetic is like the best nights sleep you'll ever have lol

[treez in reply to ab24601]

Thanks again,good to know it's a quick recovery.and I have had a anesthetic before and it's great sleep ☺

[treez]

Hi all

Just an update and to thank everyone for their replies,had my gyni appointment today and she advised that I tried the mirena coil as it has quite a good success rate and is being used more these days,so fingers crossed that should sort me out as my only other option is a hysterectomy so it has to be worth a try.

Treez