Adenomyosis-treatment success stories....?

[Gill1977]

Hello ladies-hope you're all as well as can be today. I'm desperately hoping that some of you might be able to offer me some light at the end of the tunnel in terms of adeno treatments.....

The pill -anyone had success with this?

Chemically induced menopause...?

Any other form of treatment?

The coil was definitely not suitable for me unfortunately. I'm aware that a hysterectomy is defined as the "cure" but I'd be interested to hear from anyone who has had symptom improvement using other methods.

Thanks for your time ladies..

Gx

[hilkora]

Hi, I have adenomyosis along with endometriosis. I'm managing pain with birth control (break every 3 months to have a period), diet (no caffeine, lactose, refined sugars, alcohol) and excercise. There is an option to have surgery to remove excess tissue that has grown through the uterus wall and also inside the uterus. With tissue outside the uterus is tricky as it's not clear where the overgrowth stops and actual uterus starts. I looked into having a hysterectomy but it won't cure my endo so that is not an option. Also keep in mind that even if you have a hysterectomy and leave the ovaries, you will still go into menopause a few years later. Also keep in mind that hysterectomy is a major operation that has risks of damage to other organs and nerves within the pelvis. Re chemically induced menopause - I was in one for 3 months and it does help. However, you can't be in medically induced menopause for more than 6 months because you will have side effects and will need to take HRT so it's only a temporary solution.

[Gill1977 in reply to hilkora]

Thank you so much for responding. I can't tell you how much I appreciate it. Would you mind telling me which pill you are on please? Im struggling so much with bloating, pain inside my hips and increased back pain- all of which I can't seem to shift. TBH it's all frightening me. My last lap was dec2019 and I had an mri in march but I'm terrified they've missed something. Anxiety levels are through the roof. X

[hilkora in reply to Gill1977]

I've tried different methods over the years (mirena coil, vaginal ring, 3 different combined and progesterone only pill), and they did help with pain but gave me horrible mood swings and anxiety. I'm on evra patch now week 4 so far so good. Every body is different, pills that didn't agree with me might work for you. Evra patch is I think the 7th or 8th contraceptive I've tried in the past 3 years. Btw I had all sorts of pain for at least a year after my last lap, maybe your body is still adjusting post op? X x

[Gill1977 in reply to hilkora]

I've got a call with my consultant next week. I have no idea what's going on with my body but I feel like something has changed. Adeno progression perhaps? The coil didn't agree with me and had it out earlier this year and it's been a long time since I took any other form of contraception, but I'm now desperate- to the point where i just want it all out. I'm just so frightened that something sinister has developed since my last lap and mri. X

[hilkora in reply to Gill1977]

To be fair my pains got worse after laps, but try not to think the worst. Definitely worth trying out contraceptives to manage pain. Does pain get worse when you're on period? I had back pain on Mirena, and hip pain after surgery. Nurse said hip pain was due to nerve damage as my body was pulled around when I was under anaesthetic. Hip pain went away after over a year.

[Gill1977 in reply to hilkora]

I'm due my period in about 3/4 days and Ive had back pain and bloating for about a week- but o think the bloating has been more like 4 to 6 weeks with a couple of days break. I thought my hip pain was due to my exercising in the house on a hard tiled floor rather than the sprung floor my body is used to. But it seems to come and go. Never thought about it being lap related- he did say he had a good old rummage! Xx

[AllthatGlitters]

Hello I have been through several treatments for adenomyosis. I also have endometriosis. I have tried several pills, had endometrial ablation and this is to stop the bleeding which I have had constant for 13 months now. I also take tramadol for false labour pains. I can’t be more positive as things haven’t worked for me, it’s a hard illness to cope with at times and what doesn’t work for me may work for others. X

[Gill1977 in reply to AllthatGlitters]

I'm truly sorry to hear that you are still suffering so much. The false labour pains you mention - I can relate...the back pain I've felt over the past few days is the same as I experienced during early labour (although today, day 25 of my 28 ish day cycle it has calmed down). Does a tens machine help at all?Have you tried the chemical menopause? I think this may be my next step but I'm so unsure xx

[AllthatGlitters in reply to Gill1977]

Hi Gill yeah I do have tens machine and it does work but doesn’t take away all of the pain. As you know yourself the labour pains are absolute agony. I am on tramadol again today for pain and it doesn’t take it away 100%. My option going forward is the decaptyl injection or a hysterectomy x

[Gill1977 in reply to AllthatGlitters]

I agree with you that tens take the edge away. Hot water bottles too- but they have to be so hot that they essentially distract you from the pain. I hate taking any form of meds but I'm getting desperate. None of the usual painkillers are touching my pain now. I'm speaking with my consultant on Thursday to ask what to do next. I'm assuming chemical menopause.

Are you able to distinguish endo symptoms from adeno symptoms?

Would you mind me asking what age you are? I'm 43 so I'm wondering how much of my symptoms are perimenopause related. 🤷🏻‍♀️

Really hope today is a good day for you xx

[AllthatGlitters in reply to Gill1977]

I have PM you 😀

[KimJL]

Fun facts, my birth year is 1977 & my deceased boyfriend's name is Gill. So I am 14 months post hysterectomy & I can tell you that it has made such a positive difference in my life. While I was waiting for doctors to ok surgery & they made me wait VERY LONG, I had Traditional Chinese Medicine (TCM) treatments as I could not take any hormonal meds. My treatment consisted of acupuncture, heat lamp, cupping (sometimes with heat) herbal treatment, moxibustion. I had TCM treatments from 2011 to 2019 just before my surgery.

When I had my surgery, my surgeon found my left ovary & part of my bowels had adhered to the front of the uterus, plus I had scarring on my bladder & in the pouch of Douglas. So I had a total abdominal, kept my cervix, after a couple tests & also the right ovary was kept. Please note that I am not 100% pain free, I still have painful ovulation & when I have the mini spotting every month, I still have migraines and some pelvic and back pain. But I feel really good, I can exercise again, I have more energy, I can be a little social & go out a bit and I certainly do not miss the painful, long, bloody, messy periods.

All the best, I hope you find a treatment to help you in the meantime. If you can harvest some eggs. I wish I could have.

Kim 🥰🥰