Fed up and tired

[Awwy]

Hi,

I did a request to get my latest MRI report. They have sent me notes of a recent MDT discussion. I was diagnosed with endometriosis in June 2020 after suffering for over 15 years. I am concerned about the report because it says my adenomyosis looks slightly better. I wasn't even told I had that as well. I had a CT scan and MRI in the year 2020. None of my scans at that time showed adenomyosis. 🙄

If I had known that at the timeI would have opted for a different treatment option! I'm feeling really angry and upset at the lack of communication and conflicting reports.

I have pcos, fibroids, endometriosis and adenomyosis- can you have these together? I'm so confused.

I didnt know that endometriosis can go away? Or does it become less visible/inactive? according to my latest scan there have been improvements.

I have been in GNRH analogues for 2 years. I have made a decision to come off them now, as they initially told me to go on them when I was supposed to have been listed for surgery.

I have just found out I wasn't listed until January 23 even though I had an exploration lap in Oct 22. I am on a 72 week wait.

Im worried about my pain and bleeding coming back with a vengeance but I can no longer cope with the side effects of the GNRH's. I am also in the middle of a Lupus flare so on steroid treatments. My pain and fatigue are terrible. Any help and advice would be great.

Thanks

[Endosufferer1]

Yes you can have everything with endo (fibroids...). Not everyone has that though. Endometriosis could shrink with some luck (or in stopping periods, that's what most specialists say) but you really need to manage your diet, take natural remedies and reduce stress (which is impossible for me😅). But I'm not sure endometriosis can heal on itself (depends on genetics) and whether you've got adhesions.

[Awwy in reply to Endosufferer1]

Thank you. I have totally changed my diet. Stress is difficult to manage but I have reduced so much. I have gained weight from being on Prostrap and then zoladex when that stopped working. Zoladex isn't really working anymore for me either now. Im just in pain. I have a private physio and psychologist that keeps me going. 😭

[Endosufferer1 in reply to Awwy]

Do they treat you differently when you see a psychologist? Like it won't affect your career or things like that? Because everything is recorded in your file and all specialists have access to your file! I'm not sure myself about going to see one because of all of these points mentioned above.

[Awwy in reply to Endosufferer1]

Not treated differently at all. I have worked for my employer for 23 years. I am in HR and covered by the Equality Act 2010. (UK) My employers have actually given me a lot of support which has been a blessing. They understand my health has deteriorated rapidly over the last 3 years. The psychologist I see is private not through NHS. He has helped me manage my pain and mental health. I honestly think I would have ended myself if I had not sought support because the pain is horrendous. He is actually writing a letter to my endometrosis specialist to get him to expedite my surgery because of the toll it has taken on me. I'm a single parent with 2 children and I have very little energy to do anything. I feel bad for my kids as I can't take them places. 🥺

[AllthatGlitters]

I have endometriosis and adenomyosis, only thing that has helped my bleeding and labour pains is endometrial ablation & HRT. Previously had decepeptyl injections which were 🤮and so glad I am off them now.

As for pain and fatigue I have fibro and CFS, as if it’s not enough having gynaecology problems. Have you looked into these conditions? I am sure there is a link with gynae and fibro when you read up about it online.

Sorry that you weren’t informed at the time about your health conditions, it’s shocking & upsetting for you 💜

[Awwy in reply to AllthatGlitters]

Thank you. I have CFS and currently waiting for a fibromyalgia diagnosis. I have mixed connective tissue disease which is a mix of lupus, RA and also scleroderma. My thyroid is now under investigation too. Im basically a mess.

[AllthatGlitters in reply to Awwy]

sorry to hear this, life is so challenging 😥

[atealdeer]

Just to address the "can endo shrink" question, the GNRHa injections do shrink it, yes. This is what I've been told by a consultant after my lap, which was after nearly a year on Decapeptyl. Mine was also just meant to keep me going while waiting for surgery but I've been left on it to control the endo for now.

I'm really sorry you're going through such a lot.

[Awwy in reply to atealdeer]

Thank you. That is good to know. Whst is decapeptyl? Do you have hrt with it?

[atealdeer in reply to Awwy]

It's just a different GNRH analogue. I take a low dose HRT alongside it. I'm 18 months in now and my DEXA scan (after a year on it) showed my bones were fine, so I could continue. I really don't know how anyone manages these things without the HRT alongside!

[Awwy in reply to atealdeer]

True i don't either. I am 2 years in with GNRH analogues waiting my second bone DEXA scan. 🥺. I still have of 50 weeks to wait for my op. 😱.