Advice on Adenomyosis - undiagnosed.

[Jazzransom]

Hi everyone,

I had a private diagnostic lap in May because I had two areas of pelvic pain, one on the right side and one across the front of my pelvis. I couldn’t wait any more for NHS as it was getting worse so I used my savings. They found superficial endo and removed it - so now the pain on my right side has gone which is amazing. However the other pain across the front of my pelvis is still there! And getting worse every month. I’m back to having pain every day.

Finally got to see the NHS consultant after waiting 18 months for an appointment, she immediately discharged me with a prescription for the mini pill and told me it was either the surgery or a urology problem and not anything she could help with. Didn’t have the energy to fight the hospital to reverse the discharge so I paid to see the private consultant who did my surgery and he said it could be Adenomyosis (at my suggestion), but as we are looking to have kids soon there isn’t much point getting a diagnosis as treatment is minimal if you want kids. He also said that it could be unexplained pelvic pain that clears up with pregnancy. There was no endo in that area and he didn’t see any evidence of adeno when he did the surgery.

All the adeno symptoms I have read online and on this forum are the same as mine. Would appreciate any advice from people who have been diagnosed! Or any who had ‘unexplained pelvic pain’ and never got a diagnosis.

-inflammation and hot pain across front of pelvis (constant ache)

-feels like muscular pain at front of my bladder when I need a wee, sometimes I don’t even need a wee it just feels like it (but only around my period)

-pain builds leading up to my period for ten days or so.

- pain is really intense first few days of my period, but then continues to build again for another week-ish.

-bloating so much I can’t fit in my clothes (whenever the pain is bad)

-painful sex around the time of my period

-when I’m in pain and I apply pressure every thing feels sore and tender.

-increased pain around ovulation (never had this before)

-I’ve noticed that it’s all much worse at the end of the day, maybe because I’m tired?

We are planning to start trying to get pregnant next month, but being in pain all the time and bloated like a balloon doesn’t put me in the mood! I’m feeling lost and would appreciate any advice or shared experiences.

Thank you so much xx

[Lindle]

Have you had any Vscans?

[Jazzransom in reply to Lindle]

I had an intra vaginal ultrasound before the surgery and they didn’t pick up anything, just that it was a bit tender.

[BitterSweetS]

Did you have an MRI scan, that's where mine was spotted.

[Jazzransom in reply to BitterSweetS]

No I asked for one, but my GP said it’s a huge waiting time again. The private consultant said it would be really expensive and not worth doing because the treatment options are limited.

[hazzahill12]

hi did you see an private endo/ adenomyosis consultant?

I have both endo and adenomyosis it took me 6 years to get diagnosed. I had several laparoscopy’s always see what they classified mild endometriosis but never adenomyosis. I like you have the same pains. It was years later after splitting with my ex husband when I met my new partner that I started the whole fertility investigations again that I had an MRI ordered by my gp and this is how my address was diagnosed. I have a large focul lesion at the fundus of my uterus and some diffused patches. The diagnosis was really important in planning my ivf and I had zolodex pre ivf for 6 months to switch everything off before starting a long protocol of ivf including down regs for longer. The idea is to calm and suppress the endometriosis & adenomyosis which effects implantation and also egg quality.

X

[Jazzransom in reply to hazzahill12]

he’s an endo specialist not sure about adeno. Do you think it’s worth trying to conceive for a year or so and then pushing for a diagnosis? I know with the NHS they want you to have two years of trying before they investigate. I’ve never tried to get pregnant before so I’ve got no idea how fertile I am. Xx

[hazzahill12 in reply to Jazzransom]

yes absolutely try naturally if you have not already. But be aware of your pain and what you believe you have depending on your age I wouldn’t leave it two years before seeking help maybe 6 months that’s just my opinion and Iam now 37 years old all of my issues started at 26 when I came off the contraception pill to try for a baby. Good luck 🤞

[Starry1977]

hI.i have adenomoysis, mine was opicked up in an mri due to thickening of the junctuonal zone. An ultrasound nor a lap picked it up.I luckily don't get any severe pain but I do get the hot feeling in pelvis and things feel heavy. My legs also sometimes ache. I used to get a tender pelvic area during a period but I had a lap in May that showed endo on bladder wall. That's improved with removal. Its really hard to say what causes what inside me though as I have stage 4 with extensive scarring and a frozen pelvis.Your doc is right with treatment options though. The only real cure as far as I'm aware is a hysterectomy. Contraception can help people the pain but if you're trying for a baby that's probably not an option. Have you thought about holistic therapy? No idea if it works but people seem to swear by reflexology and acupuncture.

[Jazzransom in reply to Starry1977]

that’s interesting, so an MRI was the only thing that got you a diagnosis?

[Starry1977 in reply to Jazzransom]

yes.all the ultrasound showed was a cyst. Didn't show any other sever endometriosis

[BitterSweetS]

I found Accupucture helpful for my pain management and I've been on the mini pill past 4 months as I've had years of pain its given me some relief and break from heavy bleeds. I've heard some people in the community have found specialist gyne physios for after care of surgery and continued treatment help. Hope your journey gets you too a pain free place. Take care x

[Jazzransom in reply to BitterSweetS]

I’ve been having acupuncture for a couple of years, and it helps with my hormone regulation. Sadly it’s not done anything for the pain so far. I’m going to keep going though as it helps even if only because I know I’m doing something productive! Thank you x

[27gems]

Hi - so I had an MRI that picked up a bulky uterus with a section of it that was suggestive of adenomyosis.

I finally saw a gynae would seemed to care who sent me for a specialised MRI with contrast that took staged images and it found adenomyosis that was diffuse (whole uterus full of it) with adhesions to bowel.......

If planning a pregnancy it would be a good idea to know if you have it or not so midwives / delivering drs aware of the uterus.

sorry to sound nuts but after suffering with a ruined life from gynae hell since 13 (almost 30 years) I've found only way to get tests and things is to read up on the NICE guidelines of treatment pathways and be that harsh annoyed demanding patient that we are normally not like !! Contact the PALS team for the hospital your last appointment was at, advise No Investigations and NO Help and not happy.

Basically Demand an MRI with contrast for diagnosis - you need to know if endo or adeno or both! Be strong and demand what you need - or they'll just do nothing.