Hi all
My endo saga continues... Just been to see the gynae after having 2 mris & and CT scan so they could figure out what was going on. It had all got very scary. I was originally told I have severe endo throughout my pelvis, then that I had a cyst behind my uterus and but today I've been told that I have endo within a large (12cm)fibroid that is sitting behind my uterus. Like, between my uterus and 'back passage'. He said the endo is contained within the fibroid and is not cyst as they first thought. He is confident it is maligned. He said it's very unusual and complex presentation which is why it took so many scans and they were all very puzzled by it. He said I don't have endo elsewhere and apologised I was told this and said it was because it was a non gynae radiographer looking at a bone mri but now they've had more specific scans, and the endo & gynae team have reviewed, they can now see what it is. He said it's just very unusual.
He said as the fibroid is growing from my uterus, surgery would be complicated and could risk hysterectomy so his preferred treatment is to do chemical menopause. He didn't say the name bit said it would be one injection lasting 3 months and I would get this twice, so covering 6 months and I would take hrt at same time to minimise symptoms. He said the aim would be to shrink the fibroid which he thinks would reduce my symptoms. I hate the idea of chemical hormones but also hate the idea of surgery and want my life back so I feel I've no option really.
I'm very disabled by my symptoms, mostly chronic fatigue and back pain bout I also get a lot of abdominal pain and some gastro symptoms.
Any advice on this would be much appreciated.
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Hi,
Im so glad that you have found out what it is and have a diagnosis which isn't the big 'C' that you were worried about last week. 😊
Ive been in chemical menopause for about 3 years now. I have Prostap injections every 3 months. I have had time without HRT but currently I have a mirena coil in for progesterone and I have oestrogen patches. Personally, being in chemical menopause makes my symptoms so much better but they are still quite bad. Just 2 weeks ago my gynae stopped my menopause injection as im still debilitated from pain and he didnt think it was working, 4 days later I was in agony having to take twice as much morphine so went to see him as an emergency and he said that it was clearly helping my pain considerably but for me it does still leave a lot of pain.
I think you do also need to consider fertility and I would ask what happens after 6 months? As although it might shrink as soon as you stop it might grow again?
Love nd hugs. Xxx
They said after 6 months, they'll repeat the scans to see if it's shrunk and then review my options.
I'm 40 (today) and haven't had a family. I'm so ill I couldn't possibly manage a child so it's not even been a consideration. If I get well again, I may feel differently and so may want to try but I'm not 100 % sure if it's what I want for my life. My focus is really just on getting my own life back. I'd 100% chose to have a hysterectomy to get rid of the fibroid if it was the only way to get better as I'm not having a life just now.
Do you mind telling me what your symptoms are? I think as my endo is quite unusual, I only get quite specific symptoms, with no bleeding issues or periods related problems. It's mostly fatigue and back pain for me. It's totally debilitating though.
Ahh right ok that makes sense.
Happy birthday for today!!!
I dont mind at all. My symptoms are heavy and long periods that are irregular, acne, low mood round my periods, bowel troubles on period, cold/flu symptoms before my period and painful periods. These have all been fixed with menopause as I have no periods. I also used to get very bad pain during intercourse or even when using tampons which doesnt seem to have gotten any better so I simply do neither. My symptoms at the moment are fatigue and pain. The pain is currently disabling and is the main problem to be honest for me. Its constant and then gets worse on standing or sitting also worse when going to the toilet. I get pain in my pelvis which is left sided and at its worst when i put weight on my left leg like fires all round my pelvis like electrical shocks.
If you want to know anymore just ask. 😊 xxx
Ohh I should also add that I was diagnosed with a small fibroid in january aswell as having endometriosis.