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Post by uncomfortable on Sept 14, 2011 10:30:34 GMT -5
Okay, I know its been a while. I don't have a lot of time, so my quick update is that I am now officially off Provera, I think I have finally received an "unofficial" diagnosis of Endo (this morning actually) and I am under the care of some really great doctors. So I think things are finally falling into place a bit more, and I am starting to make more sense of my body. I will try and post a much more complete update when I get a chance.
Also, a doc I saw today agreed that he thinks my nausea issues are Estrogen related. His advice was to stop my cycles for that to happen, however I am thinking alternative routes!
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Post by Karen on Sept 14, 2011 17:57:40 GMT -5
Was wondering what happened to you - haven't seen you around in a while! I'm SO glad you have some good docs that are taking ownership of your symptoms. I'm curious to hear the details when you have time!
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Post by uncomfortable on Apr 30, 2012 20:57:36 GMT -5
A very quick update: I had a lap done just over two weeks ago, and Endo was confirmed, diagnosed, and everything that was seen was excised. I am quite ecstatic about the diagnosis, and excision, but I am still feeling pretty rubbish. I know two weeks isn't really enough time for my body to get where it needs to be, but knowing that I went through the surgery, and still came out feeling pretty bad is discouraging. (I know its still early, I know)
I am hoping things will improve as time moves forward though. I had a rough few weeks emotionally, and I am just finally now beginning to absorb what has actually transpired for me over the past year.
I know this isn't much of an update, but I will hopefully be able to update better at a later date in the near future.
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Post by Karen on May 1, 2012 4:13:21 GMT -5
Finally! I know no one wants to be diagnosed with endo, but you've been waiting such a long time to have a name for all your symptoms and have someone actually find it. I really applaud you for pushing forward and getting a diagnosis and excision. That being said, a diagnosis can be a slap in the face, particularly when you're recovering and hyper-aware of every little twitch, ache, and pain. Give yourself a bit more time & feel free to work out your thoughts with us. Wishing you a speedy recovery!
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Post by semicolon on May 1, 2012 6:14:15 GMT -5
I read through your thread, you've been through a lot to get a diagnosis! I hope things improve for you in the next couple weeks and you can make a plan to move forward feeling better. Thanks for the update!
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Post by JC on May 1, 2012 6:29:02 GMT -5
It's really good to hear from you! I'm glad that you finally got the surgery and diagnosis. It's weird the stages we go through starting with symptoms, fighting with doctors to listen, waiting months for a surgery all while feeling frustrated and sick. Then when you finally get the diagnosis it's quite an emotional roller coaster. First it's like FINALLY some validation! Then you have to settle into the "what's next?" part of it and come to terms with a disease which is never easy. At least knowing what you are dealing with now will be one less thing to wonder and worry about. I feel like getting the diagnosis is just the start of it all and eventually it all balances out into a new life with endo. I'm really glad you came to update us. If you feel like venting there is a whole wealth of us girls here who understand.
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Post by hellsbells on May 1, 2012 6:54:00 GMT -5
HI!!!!!!!! I'm thrilled to hear from you and thrilled that as someone put it you have 'a name for your pain'. I'm so sorry you struggled for so long without answers. Please stay around and keep posting!
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Post by 1234 on May 1, 2012 7:14:42 GMT -5
Glad you got through the surgery and have an answer. It takes a while to recover, so don't be too hard on yourself--you're only two weeks out! take care, and look forward to hearing more from you soon.
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Post by uncomfortable on May 1, 2012 11:01:42 GMT -5
Thanks Everyone!
To give you a brief re-cap of my year...
I finally got off Provera last summer, and do not regret it for a second. I experienced an exreme amount of depression and depressive effects having been on Provera, as well as a whole slew of unpleasant side effects (like hot flashes, night sweats, etc..) I am now back to being nauseous a fair amount of the time, and find it extremely disruptive to my life, but I think I am becoming an expert on anti-nausea drugs/remedies.
I found an amazing team of doctors who have been able to help me in getting diagnosed. I've had a rough ride in getting to see these doctors, but I was finally referred to an Endo specialist, which made all the difference. He didn't know what to make of my nausea, so he sent me to another specialist, who agreed with me that it was probably estrogen based. From there he couldn't do anything for me, because I don't want to take the hormone based drugs he offered. So I went back to the Endo specialist, and we began looking at possible causes of my pain. He did some nerve blockages to determine if I had nerve entrapment (it was determined I do not). I had a series of ultrasounds done, and an MRI to check for Adenomyosis. Those did not show conclusive results pointing to Adenomyosis. ( I was told the chance of it showing up on imaging was approximately 50%) After every other possible source of non endo related testing was exhausted, he happily agreed to book me for surgery.
So 2 weeks ago I had surgery. The surgery itself went really well. In the recovery room, I was told that they found Endo. I repeated it back to the doctor ( I was still groggy) I think she thought I was upset by the result, because she said that it was only minimal, but I shook my head and smiled and said, no, you found it, that's all that matters.
I had a bit of a rough time with the anesthetic, but after a few days, recovery was under way. As I posted yesterday, my recovery has been extremely rough emotionally. I think a fair amount of this has to do with how long it has taken me to get this diagnosis. I am beyond elated to finally be diagnosed, but a huge part of me is still uncertain of what this actually means. I think it is strange I feel this way, because I had thorough amounts of knowledge going into this surgery, and I know what Endo holds for my future. I guess now it is absolute. No one can tell me I was wrong anymore.
Most of my lesions were clear, but I also had some white, and hemorrhagic lesions as well. I no longer question why they were overlooked in my first lap. Due to their location, size, and appearance. My doctor didn't know what she was looking for during my first lap. I don't think that is a comment on her, but a comment on the medical community, and the lack of education doctors are given regarding Endo, and its manifestations.
I just starting with early spotting/bleeding a short while ago. I am frightened to experience my first period post op, but also really curious. I am hoping it goes smooth. Although emotionally I have tried to prepared myself for the worst.
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Post by hellsbells on May 1, 2012 12:36:11 GMT -5
After months of trying to get a doctor to help me, after my lap/diagnosis I came home and wept buckets.
I too had nausea for a long time, put it down to hormones but I discovered it was milk! I have next to no nausea these days by not having ordinary milk.
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Post by JC on May 1, 2012 17:55:55 GMT -5
What an exhausting journey but I'm so glad you have answers finally.
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Post by Karen on May 1, 2012 19:12:23 GMT -5
I can understand the emotional release that you may be feeling right now after going through all that. It'll take you a little while to figure out what this all means emotionally - they don't really prep you for that in the books! But, big pat on the back for you for pushing forward and trusting your gut. Really, you got to this point out of sheer determination and persistence. I can't imagine what your future holds in terms of endo recovery with that kind of approach!
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Post by semicolon on May 1, 2012 19:19:10 GMT -5
Don't put all your eggs in one basket- that first period can be a doozie but is not necessarily indicative of post- lap life. Although I hope it does go easy on you!
I really like what you said about your previous doc, I think most just don't know enough about endo and what it can look or act like. I thank my stars there are specialists out there, and glad you found one!
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Post by uncomfortable on May 2, 2012 11:18:05 GMT -5
Helen, that is really great that you have had an improvement with your nausea since eliminating milk. I've been without dairy for over a decade, so I know it can't be that, but you bring up a point that it is always worth looking into other causes of the nausea. For me, I do think it might be mostly hormone based because when I do have an increase in estrogen I tend to feel worse. However, I also think some of it might be more anxiety related now, especially since it is such a constant problem, I think my body is primed for it. I saw my doctor yesterday and we are going to try and work on stimulating my appetite.
Karen- They certainly do NOT prep you for the emotional aspect. I have been finding the emotional side the most difficult to deal with. I kind of freaked out after surgery, but now I am just trying to take it a day at a time. I think a huge part of it for me, has been having to come to terms with the idea that I have to take care of myself. Even when I am too tired, or don't want to, its only me, living on my own, and I have to do it. That has by far been my biggest hurdle. I am So glad I didn't give up on trying to get a diagnosis. I know I was very close a number of times. I have no idea what pushed me to do it, but I am glad I have it. Now I feel like I can relax a bit, and soak it in.
Semicolon - Thank you. I have heard about the first period post op being horrible, so I've been trying not to put too much store into it. It hasn't been my worst period ever, but it certainly hasn't been pain-free either. I guess I'm not realistically looking for pain free, but at least pain manageable. I am hoping that the next one is better.
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Post by Karen on May 2, 2012 18:22:37 GMT -5
I think a huge part of it for me, has been having to come to terms with the idea that I have to take care of myself. Even when I am too tired, or don't want to, its only me, living on my own, and I have to do it. That has by far been my biggest hurdle. I 100% get this. I've been on my own throughout this all and have only had help from family a total of 4 days in the past 3.5 years. I don't have the luxury of, when I'm not feeling good, sending someone to pick up a prescription, driving me to an appointment, grocery shopping or making dinner, fetching me a painkiller and glass of water when I'm writhing in pain, rubbing my back when it aches, etc. It's hard to do alone, but know that it can be done. I don't quite know how sometimes, but it can be done!! I think the hardest thing for me is this: for those that have family nearby or have a partner that's been with them since the beginning, it's just natural that they'll provide support. But, for those of us that are on our own from day 1, I struggle with how to know when/how to introduce someone new to this. I hide this from my friends and family as much as possible - they don't know what it's really like for me when I'm at my worst. I struggle with wrapping my head around bringing someone new into this, letting someone else even think of helping out at my worst, etc. Does that make sense or sound similar to what's going on in your head? Whatever the case, rest up and know that you're not going through this alone. Physically, maybe, but emotionally, no!
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