Adenomyosis

[Pnut2008]

I was diagnosed with adenomyosis after several months of pain and finally a ultrasound.

Past HX: Mirena implant, which went through uterus and had to be removed laparoscopically.

Severe bleeding and pain so I had endometrial oblation as well as a bilateral tubal ligation.

Was great for 8 years now I have pain coming more frequently and more painful. I feel like I’m in labor. I still do not have a period.

Is this normal to be in excruciating pain. My doctor won’t see me till Friday and brushed me off. Don’t want to go to ER. Could something else be wrong?

[E-JSmith]

Hi,

I'm sorry to know you're GP is not taking your pain seriously - I had a similar experience today with mine today. Lap on Monday revealed no endometriosis but I've seen the symptoms are similar to Adenomyosis and explained that to my GP and she shut me off completely and basically said my gynaecologist said nothing appeared on the lap, but that's not how to test for Adeno.

I had a transvaginal and abode ultrasound but that was months ago, and I saw online the proper testing for Adeno is MRI. Do u have suggestions of how to get referred please?

[Pnut2008 in reply to E-JSmith]

They found the what looks like adenomyosis on the vaginal ultrasound for me, but my OBGYN didn’t think it should be causing that much pain. She sent me for a CT which was normal so the are going to be doing a explorative lap next week or the end of November depending on dr schedule to see if there is anything else going on like endometriosis or scar tissue. At that time if it’s something my OBGYN can fix she will. If it is adenomyosis or endometriosis they will remove just my uterus then. That’s why scheduling is a issue. They need to have a surgeon available in the OR in case it’s something she can’t to. I heard a MRI would show, but my doctor was more concerned something else could be going on that’s why she chose CT. She said MRI wouldn’t show, but I’m assuming that’s because she wasn’t looking for the adenomyosis she was trying to see if anything else was going on. She said going in laparoscopically would be my best bet. So I won’t know what happened till I wake up. Hope this helped some. Goodluck

[E-JSmith in reply to Pnut2008]

Wow, that's interesting. Sounds like a lot, I will for sure be uplifting you in my positive thoughts and prayers. I hope your lap goes well and they find some answers. They should still do and MRI - that and a hysterectomy (which is obvs not what anyone wants) are they only concrete ways to diagnose MRI. That's what I've researched in the UK and US. But they don't have a lot of radiologists or gynaecologists that specialise or are trained to identify its manifestation within the uterus. Which is not a fault of the doctors, just the medical field. This has helped and I hope all goes well with your surgery, recovery and everything! Please let me know how it goes. : )