advice for adenomyosis

[cantdeal]

Hi all. I have endometriosis, diagnosed in 1999 and adenomyosis, diagnosed in 2018. I’m 44 years old now. I am under the care of a gynaecologist but maybe I should get another opinion..?

I suffer with severe pain during my period but then right after bleeding stops, I suffer with a burning pain for about 10-12 days. It’s totally debilitating. Painkillers hardly work during this stage. I get 3-4 days of the month where I’m pain free. My life works around managing my pain. As a result my overall physical and mental health feels like it’s deteriorating.

Dr has referred me to a 9 week pain management programme but I’m not feeling optimistic. Has anyone taken part in a similar programme? It’s all online with a gynae nurse, a physiotherapist and a psychologist.

is it normal to suffer like this? My periods have always been horrific but only 2 days of the month. Since coming in to my late 30s this pre-period and post-period pain started, it’s getting worse and I don’t know how to cope anymore 😭

It’s a long post, sorry. Thank you for reading.

[Bookworm3371]

I’m sorry to hear you’re suffering so much. I just wanted to say I also had pain straight after my period, and would go on for days, often a couple of weeks. I found it difficult explaining this to doctors as they kept talking about during my period or PMT but it was AFTER. I kept a log etc.

Have you had any scans to identify what might be causing the pain? Mine was a combo of adeno, ovaries stuck to uterus, endometriomas that kept bursting and a load of endo sticking everything to each other. Had 9 months of zoladex to bring on menopause and now 2 months post op having had it all removed. The zoladex stopped the pain for me, I couldn’t function at all before that, I was popping so many painkillers I rattled when I walked and they did nothing really.

I hope you get some help, I can totally understand the pain you mean, it’s completely debilitating x

[cantdeal in reply to Bookworm3371]

Thank you, I really appreciate your reply. I hope you’re managing better now. Scans show similar for me, retroverted uterus, ovaries stuck to the uterus, etc. The person who did the scan was really good, she believes this post period pain is due to the adenomyosis which has gotten worse. Gynae offers hysterectomy but I’m too scared of what that might bring on 😔

I had zoladex in my 20s following surgery but I felt awful on it. However, I’m willing to give it a go if it helps the pain. My gynae doesn’t suggest much other than a hysterectomy, I’ve not had good long term results despite the operations I’ve had in the past. By the time I’m off the meds post-op, my endo is back. So he doesn’t think it’s worth going through that.

Thanks again, it’s good to know you’ve had good results so far. I hope it continues 💛

[Bookworm3371 in reply to cantdeal]

I’m 2 months post op from a total hysterectomy and endo excision - I had zoladex as a “test of cure” and to ensure I could tolerate the HRT as I need to be on that until I’m at least 52 to help with bone health, etc. Did you have any HRT when you last was on zoladex? It wasn’t a walk in the park, I definitely had side effects and was hard to know what was zoladex, what was the HRT and what was menopause BUT the pain stopped and the symptoms settled a couple of months in.

Ive read other comments on this forum that the NHS wouldn’t approve a hysterectomy, particularly at 39, but that’s what I had. Going onto zoladex was the condition - have that, we will list you for surgery if you’re ok on it.

All of that to say… a hysterectomy is a big decision, it’s a big operation with permanent consequences so it may not be the right path for you or the right path right now, but I wanted to share my experience in case it’s helpful and happy to answer any questions. I had tried everything else and took zoladex as a last resort and was amazed that it actually helped - it can also be stopped if you’re not happy with it, however I appreciate that in itself might cause side effects. I am now also needing to sort my thyroid out as it seems to have caused some issues there. It’s so hard, there are no concrete answers and the pain can make you so desperate for help x

[cantdeal in reply to Bookworm3371]

I appreciate this. It's reassuring to know I'm not alone, and sharing your experience is helpful. A total hysterectomy has been recommended. I’m just scared and worry about endo pain returning, the HRT, all the risks that come with this type of operation. The pain has truly made me desperate now. I will be reading about it all again. Thanks again ☺️

[Taikaei]

Adeno sufferer here, I relate to your story. I always had horrible pain but not this constant until few years ago. Turns out it is diffuse adenomyosis and that is what made the difference for me. In particular one of the fibroids grows outside the uterus pressing on other organs.

Unfortunately I found that GPs are even more clueless on adeno then endometriosis. They insisted fibroids couldn’t cause the extreme pain in my legs and debilitating nausea and the limping. I couldn’t walk and I was a zombie under any kind of sedative drugs. 4 Orthopaedic specialists and 3 MRI confirmed that I do not have anything in my legs or spine that could cause the pain I have, they only see these huge “serum filled fibroids” all around my pelvic area.

As per the endo, I had to throw away any medication, had research and read a lot and went down the path of trials and errors with supplements and food. I need to see what triggers or helps the pain and listen to my body constantly.

I can have now a solid 2 weeks of manageable pain where I function without medications.

Mind you I’m not pain free but I function well and I find this a huge victory already.

I wish you luck and hope you find something that works for you very soon.

[cantdeal in reply to Taikaei]

Thank you for your reply. I’m in a similar boat re looking at alternative ways to help myself, I struggle to be consistent though due to the pain taking over so often. Plus I have 3 daughters, my elder 2 have endo symptoms and are already under the care of gynae to investigate. Trying my best. I got sciatica 2 years ago, which is chronic. I’ve asked for an MRI as I’m worried it may be endo on my spine. Gynae says I have to get that referral from the GP. Ugh! The world of supplements and holistic treatments is so vast and then researching and finding trustworthy companies is confusing and overwhelming. I keep adding things to my list to research and eventually order. Thank you for sharing your experience, I hope it continues to improve 💛