Adenomyosis found on MRI, mirena recommended? surgery?

[Ta2018]

Anyone with endo also been diagnosed with adenomyosis? I went for my MRI results today and found out, there was also a 4cm mass seen which they said was likely a luteal cyst..I'm having a follow up scan next month to check it. The consultant now wants me to try the mirena coil. Has anyone tried the coil for endo and adenomyosis and did it work for you? or is it just a temporary solution? I'm not a fan of hormonal contraceptives, have tried the mini pill with no success and more symptoms. Is surgery/hysterectomy a viable option in treatment? has anyone undergone surgery? would love to hear your experiences

[newstart2020]

Hi Ta,

I was diagnosed in my 30s with stage IV endo. I had, within 2-3 years, a laparoscopy, 6 months depovera, then a laparotomy, and then the mirena coil. The first coil took 6 months to settle down and then was amazing. That coil and my second one were brilliant for endo symptoms, I was very lucky. The coil I have had in for 4 years is out of position. It either migrated or it was incorrectly positioned from the get-go. The latter possibility is more likely. (If you do choose to get one, get it inserted by someone with endo/adeno experience.)

I was prescribed desogestrel not long after my current mirena was put in

- maybe a year. I stayed on it till last summer. I didn't know my coil

was out of position and ineffective. Desogestrel didn't really help with

endo symptoms, and I didn't like how it made me feel emotionally. I was prescribed

anti-depressants too, and came off them last summer also.

I was just diagnosed with adeno at xmas by a consultant with ultrasound. I had almost no endo symptoms when I had a (correctly-positioned!) mirena in.

I don't know when I developed adeno - it could have first developed last summer when I stopped taking the pill, or 4 years ago when the coil went in possibly incorrectlt, or after my last endo surgeries 10 years ago with the mirena in correctly.

I'm waiting for a consultant appointment to get this incorrectly positioned coil out - but despite all of the above, I want another one put in because the coil has been the only thing that really helped with endo pain and bloating. If it doesn't deal with symptoms of both adeno and endo, I'll request a hysterectomy as the adeno showed up last December as the deep-in-the-tissue type and there's no surgical treatment option for the deep adeno, though there might be for the surface adeno?

Sorry that's a bit muddled! I wish I knew at what point the coil was no longer working for me, then I could maybe say whether or not it helped with adeno!

[Ta2018 in reply to newstart2020]

thanks for your reply! do you mind me asking, do you have regular checks with gynae or just get referred back when symptoms return? i'm a little overwhelmed by this, i had a lap in early 2018 and mild to moderate endo was diagnosed. Afterwards i was discharged, i had pains that came and went over the last couple of years and some bowel symptoms so was sent to gastro first, had a colonoscopy which was fine and eventually sent back to gyn. Then finally got an MRI a few weeks ago. I went to my GP for something unrelated and was told then that my MRI was "normal" so wasn't expecting this today.

I have also tried desogestrel for about 6 months but didn't really work for me either.

The consultant didn't mention any endo found on the MRI, I'm just not sure what to think now.

Are you under the care of an endo / adeno specialist?

I'm also very wary of hormonal treatment, I have used the mini pill, the implant and the combined pill before and neither agreed with me.

I previously had an ovary removed at the time of diagnosis as it was inflamed and stuck to my pelvis due to endo. It made the world of difference to my symptoms, unfortunately they have just come back. I'm 35 so the consultant today was dismissive of hysterectomy saying they don't really put me in an early menopause yet.

[newstart2020 in reply to Ta2018]

I was self-referring via my GP, though I was mistakenly taken off the consultant's list in 2017 when the hospital didn't update my address correctly. I didn't get letters etc. I didn't think endo showed up definitively on any kind of exam apart from a lap, so it wouldn't necessarily have appeared on an MRI, but my knowledge on that is 15 years old. The two surgeries I had in my 30s were by an endo/gyney specialist, and I've managed to get back into his list only via Benenden, else I'd be waiting another 11 months to be seen by him on NHS. Is your consultant an adeno/endo specialist? Was the person you saw dismissive of hysterectomy because they want to try everything else first? I'm sorry you're having such a rough old time of it, it can be mind-bebding trying to work out what's happening with our bodies a d what to do next, given that we get different answers and options depending on the consultant!

[Ta2018 in reply to newstart2020]

thanks for your reply! it took me about 2 years to get referred back to gyno... after an ultrasound discovered an enlarged ovary and my findings were marked suspicious in 2017, i was referred to gynaecology and subsequently had a lap where the affected ovary was removed and endo found / treated, this was stage 2-3. this wasn't with an endo specialist. Right after, i was discharged... i felt much better post surgery but developed more pain, bowel symptoms and just odd symptoms over the last couple of years. after my lap, my periods where much lighter and shorter but this has also changed now with a lot of spotting, heavier bleeds and really bad pains. was sent to a Gastroenterology for the bowel symptoms, yes you're absolutely right, everything is treated as a separate thing .was told by my GP it can't be endo, some of the pains i had were under and around my ribs and she said it's too high to be endo related must be bowel or gallbladder. After that i had a colonoscopy, my bowel movements alternated between very runny and really hard / they still do and have painful movements on my period. That came back clear and was discharged again... i kept going back to the GP and finally was referred back to the gynaecology clinic. on my initial appointment i was told it can't be endo because no endo was seen on my liver when i had my lap but they ordered an abdominal and pelvic MRI anyway. my consultant right now is a gynaecologist and obstetrician with an interest in menstrual cycle irregularities, pelvic pain and vaginal prolapse. i don't see anyone in the clinic with an interest in endo so i'm assuming they are no adeno/ endo specialists. i didn't need to bring up the option of having a hysterectomy, she asked me how old i was and i got the impression that if i was closer to 40 or over 40 she might have been more open to suggest surgery. she was basically dismissive because of my age and said i'm too young she was raving about the mirena and how much it would help. i'm having a follow up scan appointment with her on the 20th of feb to scan a 4cm mass on my remaining ovary which they think is a cyst. no endo was seen, at least she didn't mention it so she said the source of all my pain and symptoms is now adeno.

prior to my gyn appointment my pain became so severe i went to my GP to see if i could get some stronger painkillers to hold me hover until my appointment. GP again thought it is most likely not gynae related and sent me off to hospital with suspected appendicitis, which it wasn't. now i really dread going back to the GP, i've been back and forth so many times. i was just so happy to be referred back to a gynae, i'm scared to "rock the boat" by asking to be referred to someone else

i just don't feel right about going down the road of hormones. post lap i made an effort be healthier, tried the progesterone pill and the implant and things got progressively worse.

i don't know if a hysterectomy would completely resolve my symptoms but i feel much much happier going down that route, despite going into early menopause and the symptoms that come with then, then try hormones / anti- hormones to see if it may work and dealing with potential side effects

i'm only about 4 years in with symptoms, i can't imagine living with these horrible symptoms for 10, 15, 20 years like so many ladies here have

[Mountainwonder]

Hi, I had the Mirena coil for 12 months and I felt terrible on it the whole time. In the end I was so anaemic I needed a blood transfusion. After a scan, they discovered that it was in the incorrect position, low lying. The consultant nurse told me it is common for it to become misplaced in women with adenomyosis and for that reason it was not recommended for me to have another one inserted, which I was quite pleased about. Then I had Prostap injections for 9 months and that suited me fine, I didn’t even need HRT add back. The only thing with Prostap is that you can only have courses of it with breaks in between but at least it gives you break from the symptoms. I’m 42 years old and I’m 5 weeks into my recovery after laparoscopic hysterectomy and BSO. I have been diagnosed with stage 2 endo. It’s a big decision to have the surgery, it’s not easy and it’s too early for me to say yet if it was the right thing to do for me. I do feel relieved not to have periods but then I’m now dealing with surgical menopause (not yet on any HRT) The symptoms are not bothering me too much at the moment but because of my age I would benefit from HRT until the normal age of menopause. At the same time I’m worried that HRT could flare up the endo. My advice would be to at least try what’s on offer before resorting to surgery as surgery brings its own risks and issues. Best wishes x

[Ta2018 in reply to Mountainwonder]

sounds like you have been through a lot! i havent tried the mirena yet, i have however had the copper coil twice, and ended up having it removed i had constant yeast and urinary infections and constant back pain. tried desogestrel for over 6 months and felt worse than before, had implanon for a couple of years gained lots of weight and didnt feel good at all. so the next after your mirena was prostrap? this hasnt been mentioned to me as an option, my consultant was only trying to get me to try the mirena and was raving about it. do you mind me asking, did the prostrap stop working for you or did you opt to then have surgery?

i understand surgery is not to be taken lightly and there are risks involved, i just have to say after my previous lap i felt great for a little while and my thinking is i just want to be done with it. i dread going back to the gp i have been back and forth for a couple of years now to get an mri and i just feel anything other than surgery is only a temporary measure.

[Mountainwonder in reply to Ta2018]

It sounds like you are feeling the same way I was before I had my surgery. I just wanted it done with too. I would have quite happily stayed on Prostap long term if I didn’t have to have a break from it. Prostap basically turns your hormones off, puts you in a menopause like state. You don’t have periods and I felt great on it. It’s either a monthly injection or one injection 3 monthly. The reason why you can only have courses of it I was told was down to the risk of osteoporosis. Also my surgeon said that a Prostap was kind of a test to see if I’d benefit from a hysterectomy. If my symptoms subsided with hormones switched off it would suggest I would benefit from surgery.

Ultimately, I decided I didn’t want to suffer anymore periods from hell and that I’d rather face surgery and surgical menopause than have another one.

I had tried everything on offer to me, pill, endometrial ablation, Esmya (no longer licenced) Mirena but nothing had helped.

Like you say at least surgery is a permanent solution to the adenomyosis.

Whatever you decide to do, I wish you all the very best with it x

[newstart2020 in reply to Ta2018]

PS I felt like a complete time-waster going back and forth to my GP over the years, with all these seemingly nebulous symptoms which were all treated as if they were separate things - most recently - sore lower back (sent to physio), tenderness in lower right flank (scans for kidney stones), exhaustion (endless blood tests for borderline thyroid results), low mood (put on various anti-depressants), etc. The thing was, that none of the above symptoms were continuous, but I didn't map them to a monthly cycle, and they never went away, though there was never, ever any follow up when the tests came back 'clear'. If you know the name of another endo/adeno specialist if you don't want to see the one you were with previously, I would bring their name to your GP and try to get a direct referral.

[Hidden]

I never went for the Mirena as I was so afraid it would wander as that happened with the Implanon too.

I read too many negative reviews as well though there are many women who love it.

At the moment I'm looking into UAE or a Nerve Resection and I haven't made up my mind.

Endo can be removed with wide Excision but it's different with Adenomyosis. I don't want my uterus removed as there are too many side effects reported...

[Kimple123]

Just diagnosed a few days ago. Being put on mini pill as Iv had pain and investigations as long as my arm for 3 years! They trying me on progesterone to induce menopause first. But I’m terrified at what people say about the mini pill. I’m told if it works then great but they may still have to remove womb if pill causes difficulties side effect wise! I have had post natal depression and anxiety 6 years ago so I’m told it’s not preferable method!