I hope you are having a good day. As I look out of my window, I see what is bright sunshine glowing against a beautiful blue sky on a chilly morning, and while I should be happy; I am not.
I have had deep endometriosis for many years and had 7 laparoscopies to date where the endo was diathermied each time. It was only in June 2015 when I was referred to an endometriosis specialist centre and had my 8th surgery that it was excised.
The surgery didn't help ease my pain; somehow it worsened! Nevertheless, I went on to have 3 rounds of zoladex injections. I stopped having them last May as I was feeling terrible side effects including joint pain, lethargy, mood swings etc. Since stopping them, I have not seen my periods return, suffice to say that I still have joint pain, mood swings and lethargy and I still have pain (you get the picture). I am worried I am going through an early menopause. Has anyone experienced the loss of a period since stopping zoladex? Just how common is this?
My gynaecologist rather arrogantly suggested that he had removed all the adhesions (he even commented that he was being arrogant about it! That surprised me somewhat), which he may indeed have but it doesn't take away from the fact that my pain is still very much present and I still have no period.
I returned to see him last week to be told that my options (once again) are few: a hysterectomy (I don't want this! And I have told him more than once), a blood test to determine what my hormones are doing and then the potential conversation for HRT if they are out of kilter (I have been for the blood test and I am just waiting now for the results) and to do what the pain management specialist (he referred me to) suggested I do: taking amitriptyline (impossible, as I am a single parent who cannot afford to be incapacitated by any medicine no matter how low the dose), use a TENS machine (fair enough, though I cannot at this time justify the purchase, but then again it doesn't answer why I am still in pain) and attend his chronic pain management programme (aimed at those people with mobility issues which I don't have)).
He (my gynaecologist) pretty much said he cannot do anything more for me. He left me with an open access appointment for 6 months and suggested that I probably shouldn't see him anymore anyway.
The pain management specialist isn't treating me for my pelvic pain but instead said he wanted to treat me 'holistically' and took issue with my back pain which I found bizarre because that was a result of a whiplash injury; the cause of a car crash 18 years ago and completely unrelated to my pelvic pain. I did ask if I followed his recommendations (listed above) and the pain still didn't pass, then what? His reply was that in 30% of cases he and his colleagues see, there is no known reason for the pain and therefore, they cannot help them. This left me extremely despondent.
I don't know what to do. I am feeling very low. As much as I have learned to hate my period as it has been the bane of my life for 30 years, I now miss not having it and feel helpless and still have pelvic pain anyway.
Thoughts? Experiences? Please do tell.
Thank you for listening...