- Messages
- 16
- Location
- Seattle, WA
I'm 30 and in surgical menopause. After I fell ill with ME, my endometriosis got much, much worse until a total hysterectomy was my only option -- I was bleeding so much I had blood transfusions and could no longer tolerate Lupron injections (I could tolerate them before I was ill) to keep ttthe endo symptoms away. I had a hysterectomy 3 years ago after a Lupron injection almost made me sweat to death from hot flashes. I have strong suspicions that endometriosis is an auto-immune disease and that ME threw my immune system into such chaos that what had been a manageable condition (the endo) nearly killed me. The surgery was successful, though, and I have been doing well on a tiny bit of hormones added back.
About a month ago my well-managed bio-identical hormone replacement therapy went to hell. No change in doses or any other medications, but I began to have hot flashes and lost all libido. I also became very anxious, short tempered and hungry. My internist suggested that I raise the dose of my estrogen and add a Progesterone cream (I also take progesterone as a pill). That worked for a few weeks. Slowly the hot flashes and sweating and mood changes and hot flash insomnia came back. Unwelcomely, so did endometriosis type pelvic pain, which has grown more and more excruciating, so much that my gyencologist want to do laproscopic surgery to see if there is new growth to ablate, soon and start me back on a small dose of Lupron. She thinks the end is back With all this came a new symptom, for the first time in my life -- I am, as a menopausal woman, lactating. Gyn couldn't believe it either. She said this makes it clear that there's a much bigger problem than the endo returning -- probably something's wrong with my thyroid or pituitary gland or both. In addition to surgery to remove the growths and inflammation (and to check on the mass she can feel in my pelvis), I will need to see an endocrinologist.
My gynecologist sent me off for a full panel of labels today -- thyroid, pituitary, prolactin, all the hormones, in addition to the usual tests -- I also have to have imaging to make sure the mass she felt in my pelvis isn't something more dangerous than endo before she operates. I am so scared. Are pituatary abnormalities common in ME patients? How are they different with us? I am also worried about this mass and the lactation as well; it is serious enough that the lymph nodes in my breast are hardening and there's a danger of mastitis. This sounds to me like potential for being one of those atypical cancers that ME patients get in several ways. Has anybody had a similar experience to this with menopause or with pituatary abnormalities? Can you point me to a study? I feel very lost with a bunch of disturbing symptoms. My doctors are not ME-specialists and I wonder if anything is being overlooked.
Sorry for the length. I am crashed so much and looking for any help I can get. If you've read this far, any studies, experience or referrals are beyond appreciated.
About a month ago my well-managed bio-identical hormone replacement therapy went to hell. No change in doses or any other medications, but I began to have hot flashes and lost all libido. I also became very anxious, short tempered and hungry. My internist suggested that I raise the dose of my estrogen and add a Progesterone cream (I also take progesterone as a pill). That worked for a few weeks. Slowly the hot flashes and sweating and mood changes and hot flash insomnia came back. Unwelcomely, so did endometriosis type pelvic pain, which has grown more and more excruciating, so much that my gyencologist want to do laproscopic surgery to see if there is new growth to ablate, soon and start me back on a small dose of Lupron. She thinks the end is back With all this came a new symptom, for the first time in my life -- I am, as a menopausal woman, lactating. Gyn couldn't believe it either. She said this makes it clear that there's a much bigger problem than the endo returning -- probably something's wrong with my thyroid or pituitary gland or both. In addition to surgery to remove the growths and inflammation (and to check on the mass she can feel in my pelvis), I will need to see an endocrinologist.
My gynecologist sent me off for a full panel of labels today -- thyroid, pituitary, prolactin, all the hormones, in addition to the usual tests -- I also have to have imaging to make sure the mass she felt in my pelvis isn't something more dangerous than endo before she operates. I am so scared. Are pituatary abnormalities common in ME patients? How are they different with us? I am also worried about this mass and the lactation as well; it is serious enough that the lymph nodes in my breast are hardening and there's a danger of mastitis. This sounds to me like potential for being one of those atypical cancers that ME patients get in several ways. Has anybody had a similar experience to this with menopause or with pituatary abnormalities? Can you point me to a study? I feel very lost with a bunch of disturbing symptoms. My doctors are not ME-specialists and I wonder if anything is being overlooked.
Sorry for the length. I am crashed so much and looking for any help I can get. If you've read this far, any studies, experience or referrals are beyond appreciated.