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Endo, menopause and lactating! Pituary! Could this me ME related? Help!

Discussion in 'Hormones' started by minerva, Oct 17, 2011.

  1. minerva

    minerva

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    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.
     
  2. u&iraok

    u&iraok Senior Member

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    minerva, I'm sorry you're going through this and scared. My heart goes out to you.

    My tests showed a problem with my anterior pituitary. My adrenals, thyroid and ovaries were affected and showed on tests. I don't have endo but I've had period problems--very bad PMS, bad cramps, very heavy flow with much clotting for most of my menstruating life.

    Seeing a naturopath/nutrionist helped me a lot--PMS got way better, cramps went away but heavy flow still remained, though now that I'm perimenopausal I'm having some bad symptoms again.

    We with ME have a disruption in our HPA axis (Hypothalamus, Pituitary, Adrenal).
     
  3. ahimsa

    ahimsa Senior Member

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    <snipped>

    minerva, I'm so sorry for what you are going through. I can't offer you any information, either from scientific studies that I've read or from my own experience, on your issues (e.g., hormone replacement therapy, atypical cancers, pituatary abnormalities, etc. in ME patients).

    I just wanted to offer support from a fellow endometriosis sufferer and send you some :hug: HUGS :hug:.

    I was able to eliminate my endometriosis pain by surgical removal (excision, not coagulation) of the endometriosis tissue. This does not work for all patients but I was lucky that it worked for me. But I still remember the horrible pain of the endometriosis that I had pre-surgery.

    Also, like you, my endometriosis pain was not very bad until after I came down with ME/CFS. Then the pain slowly got worse and worse over the years until I couldn't take it any more. There have been several studies showing a correlation but it's not clear exactly how endometriosis and ME/CFS are connected.
     
  4. November Girl

    November Girl Senior Member

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    Hi Minerva. I hope you get some information from your tests soon. It's so hard to get your health on an even keel, then have it yanked away again. Even if the status quo isn't good, at least you know what to expect.
     
  5. minerva

    minerva

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    An update. I went to a gyn-oncologist who specializes in post-menopausal women and enometriosis after the imaging showed a big mass attached to my vaginal cuff -- very atypical. Endo has definitely returned in other places, but the mass may not be endo. My regular gynecologist couldn't figure it out and thought it was not safe for her to take it out.

    He immediately understood why my hormones have come unbalanced. My liver has been overactive (probably because of Topamax) and not able to take in Estrogen. I asked if this could be dysautonomia because the doses have been relatively steady and he said yes.

    The bad news is that he doubts the mass is all endometriosis -- I have not had enough estrogen as a menopausal women to grow an endometrioma mass that big. He's going to have to do an open surgery to safely remove it and remove anything else in the area, to send it to a pathology lab. I will need to stay in the hospital. This will need to happen in the next week or two. There's going to be a big incision across my bikini line (as an 80% bed bound patient, the thought of wearing a bikini is kind of funny to me, but I get what he means). He's a very understanding and competent doctor with a great bedside manor, but I am freaked out. This sounds an awful lot like the atypical cancers ME patients get. I don't want to tell my friends, other than the few I broke down and told. They are sick of me being sick. I have heard from back channels that they think I could snap out of it, that they think I am melodramatic and dwell on my illness.

    They wouldn't understand this is another level entirely than my chronic illness. I tried to talk to my dad, and he said something dismissive -- "well, you've had health problems for a long time." I've never had to schedule surgery with a cancer doctor before. It's all happened so fast! I went in for a pelvic exam hoping to just get new hormones a week ago, and the doctor found the mass on my exam. I'd been having pain there, which I thought was my IBS -- collapsed once and gone to the ER for it, which is saying something, given how much the ER overstimulates me. My husband is here for me, but I'm so terrified. Thank you November Girl -- yes, the status quo was not great by any means, but this is awful. I've never had to have open surgery before. Never had this level of uncertainty before. I am so terrified. I am only 30.

    Thank you for your hugs and support. Facing this with ME is a unique level of hell, uncertainty and isolation.
     
  6. ahimsa

    ahimsa Senior Member

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    Hi minerva,

    Thanks for posting your update. I'm so sorry to read about your bad news about needing surgery to remove this mass.

    It's perfectly natural to be frightened by your situation! You suddenly found out that you need surgery and you have no firm diagnosis or prognosis. As you said, there's just so much uncertainty about what's going on. How can people not understand that this is serious? It's a shame that folks like your father are not able to give you the support and understanding that you need at this time. (although sometimes folks do mean well and just say the wrong kinds of things) I'm glad to hear that your husband is there for you.

    I sending you more good vibes and :hug: HUGS :hug: to help you get through this very difficult time. All my surgeries (each was for a different reason) have been laparoscopic (minimally invasive). This makes recovery a lot easier than an open incision. I hope you really baby yourself after your surgery and give yourself plenty of time to recover.

    You are one tough cookie to be even coherent enough to be posting a message on this forum with all that you are going through! Such an amazing level of courage and strength. Take care of yourself.
     
  7. Athene

    Athene ihateticks.me

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    Hi Minerva,
    I read the thread and I don't know anything about these problems, but I just want to send you my best wishes and sympathy, and hope all will go well for you.
    Hugs to you,
    From your alter ego!
    Athene
     
  8. u&iraok

    u&iraok Senior Member

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    I'm glad you have a good doctor you feel comfortable with. Don't dwell on what other's say. Just realize that they can't understand. It's like if you had to explain nausea to someone who's never had it or color to a blind person. And than add onto that the fact that illness scares people and makes them uncomfortable and so they react this way. I've known plenty of people who say stupid things and then...ba ba ba dum...they get sick. Only then do they understand.

    It is so difficult to add something onto ME. It's like we only have enough to barely deal with ME, adding something else is such a difficult burden. Please come here to talk and keep us updated.
     

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